Gavin Owens

{Eight Years of Amazing}

2012-01-17T05:38:00.000-08:00

Today Adam and I celebrate eight years of amazing marriage -- Ok, well that's actually a big fat lie. But before everyone starts sending me emails of concern let me explain myself. Adam and I have a conversation that seems to keep repeating its self -- people often have this crazy perception of our family, like somehow we deify all odds and live a perfect happy life overcoming each and every obstacle that comes our way. People often view our spiritual lives as something they would love to attain -- and although we are flattered, this often makes us both chuckle on a frequent basis.

During these past eight years we have both dealt with our fair share of issues. We have gone to bed without speaking, at times let other things come before each other and we have fought -- pretty darn hard. During our time with Gavin, long hospital stays forced us to live in different worlds -- I at the hospital and Adam left to make sure Madison's needs were met as well as try to give our family financial stability. We both sat by Gavin's side and watched him endure a slow death and then came home and needed to be a strong mommie and daddy for Madison, still pay the bills and all the while deal with our heavy grief.

So I often ask myself -- how did we make it? How eight years later can I sit here and tell you without a shadow of doubt that Adam is the most amazing man and partner I could ever ask for. How did we make it through the other side when so many other families fall apart.

God seriously has had His hand on our lives.

Love is amazing. It's even more amazing when you choose to form a partnership with the understanding that it is for life. Love transforms. Not only does it transform people lives but after these past eight years I'm convinced it also transforms situations -- gives us a new way to view and look at things. Love is healing. Adam's love for me gives me the ability to be broken, knowing that when I'm crushed to the floor in a million pieces he still loves me and is willing to stay close as God puts me back together -- and the same goes for him. Love waits. Even during a time where it feels impossible to love back, love waits it out and is willing to stay strong even when our hearts feels very week. Love is honest and willing to admit that we are flawed, that we will never understand some things yet still continues to press on. Love is beautiful, even when we are covered in flilth and are down right ugly it still shines on.

These past eight years, while filled with some of the most difficult experiences I hope to ever encounter, have also been the best years of my life. Adam has given so much, loved me unconditionally and has been my biggest fan.

Adam, I love you with a deep love I never thought possible. You are my soul mate and I'm excited to walk with you until the end!

{Finding Freedom}

2012-01-09T05:49:00.000-08:00

This past week we have been on a roller coaster of emotions concerning Jayden's adoption. Last week we were under the impression that he was coming home very soon -- as in this week. We were very excited but guarded, the reason we didn't share any dates publicly. Well this week, as we kinda feared, the date for him to move in was once again moved. Ugh. We were so disappointed beyond words. It's so complicated and lots of stuff I can't share but It all is just about paperwork and court orders and timing.

We left Jayden last Friday so tired and frustrated. It's so hard when you love a child so much to not be able to being him home just because of loose ends and paper work. The facility where he is living has been so amazing in helping us progress through our training fast and effectively. To be fully trained and ready and still not be able to bring him home is frustrating. We are now, however, able to take home for the day and will do so several times a week until he is able to officially move home. This Saturday he came home for the first time and we all had an amazing time. He was a totally different kid. He was looking all around, very in control and so happy, giving us lots of smiles. He's always a happy boy but you could tell he knew he was somewhere special.

Life is filled with so many moments that we as humans can not possibly understand. After we left on Friday we just questioned why God felt this week was not the time for Jayden to come home. I know there is a reason and we are choosing to trust in God's perfect timing. To be honest we could sit for hours running through scenarios in our mind trying to figure out the answer to all this, but one thing we have learned through out journey with Gavin, and are continuing to learn is that sitting questioning why, only brings intense turmoil and such an unsettled feeling. By choosing to simply say we don't get it -- we don't like it -- but we are going to choose to believe that there is greater purpose and reason we may or may not one day understand -- amazing freedom comes.

Letting go and choosing to wave the white flag is both one of the hardest and easiest decisions to make.

This Tuesday we get to bring Jayden home over night as our last step in our training. A nurse from the facility will come with us and observe to make sure we are able to handle all his care though out the night by ourselves. We are very excited to have him for the night but also bummed since this will be the only overnight visit until he comes home which looks like will be another month away.

Once day closer right?

{We're Gonna Rock This Year}

2012-01-02T06:17:00.000-08:00

2011 was an amazing year. We welcomed Angela into our family and mastered being a family of five -- four of us here on earth and our little boy in heaven. We watched Angela change into a different child over these past 12 months. I remember when Angela first was placed in our home we kept saying -- I wonder what she will be like one year from now. Well I think we can say without a doubt that her little mind and body has found some major healing this past year. She is different little girl -- she is focused and social and most of all she has this crazy joy that just flows from her little soul.

We watched Madison grow up in so many ways. She has grown into a beautiful little lady who really makes us so proud. She has shown us that she is "ok" in many unspoken ways - you would never know the trauma that she experienced her first four years of life. She is very typical is lots of ways which brings a smile to my face -- but also filled with compassion many adults have yet to master, which brings a huge smile to my heart.

Our family has transformed over this past year and now we are excited beyond words to once again change and being our life as a family of six. This adoption process with Jayden has been nothing short of divinely planned and orchestrated by God. Even people who choose not to see God in this process still can not deny how things has just fallen in our favor. I'm excited to take on this new year -- to deify the odds and claim healing and blessing over my children's lives.

Adam had mentioned on his own blog a few weeks ago how in each of our children's rooms we have the phrase "You have always been loved; You have always been wanted" on their walls. This year, my mommie heart and soul aches for my children to know and understand the power and truth of this statement. We want both Madison and our adopted children to know that we truly longed for them before they even existed. And for Angela and Jayden who endured the unthinkable -- even during the time when they were labeled unwanted -- we wanted them so bad and fought long and hard to claim them as our own.

Adoption is amazing for so many reasons, but the most powerful thing is that adoption is what we as Christians are all about. Not one of us deserves the grace and love that God pours out on us, but yet he chose to give us all second chances -- a new name -- a new life. How crazy is it that we get to do the same for these beautiful children. So cool.

We are seriously gonna rock this year. I can't wait for the first time we all get to take our first trip out into public -- Adam and I as crazy proud parents ready to show off our beautiful kids -- but more than that -- I'm so excited to show off the amazing story and new chapter of restoration and hope God has written through our family.

{Redefining Home}

2011-12-23T06:16:00.000-08:00

Home is a powerful thing and this past week I've really been hashing out in my own mind what exactly home is. Since our desire to bring Jayden home is so strong, this idea of home has been running through my mind on a several times daily basis. The other day when driving to see Jayden I had this vivid memory of a time during the last few day's of Gavin life.

After we removed life support from Gavin and he didn't die, as everyone expected -- we experienced some intense times with our little boy. Even though he was breathing on his own, he was not breathing correctly and his lungs slowly filled with fluid. As time went on, despite our best attempts to keep him comfortable he would wake up with air hunger, in a panicked state trying to breath. He was very delirious due to the his rising CO2 levels and also the pain medication. The only thing that would get him to relax was when I whispered in his ear, "mommie's going to take you home." In the back of my mind I knew very well that he wasn't going to make it home, but I knew that the very essence of what home meant would bring him some sense of peace.

Even though Gavin had a physical home, his and our families life was lived in turmoil -- home was often in the hospital. I then started to think about Jayden. Just because he is not in a physical home doesn't mean that we can't create the sense of home for him. After all home is so much more than a physical building -- it's peace, security and most of all an intense forever love that nothing could possibly replace or mimic.

The change that we have seen in Jayden over this past month has been pretty darn cool, even the nursing staff notice the marked difference in him. When we first started visitation last month Jayden was all over the place -- almost crawling out of his skin at times. He just has trouble finding peace in his own mind, which is a part of his brain injury. Well this past week we have had numerous moments with Jayden where he will just lay in our arms -- settle in as if the he is feeling true love for the first time ever in his life. He's still all over the pace as most two year olds are but I can't help but think that his little mind is beginning to catch a glimpse of what home is all about.

Christmas is a bit extra difficult this year. Not only do we not have Gavin here with us but we also have another beautiful little boy who has yet to come home. So I find myself going back to this redefinition of home -- taking out the physical meaning of all being together in one house and allowing God to show Adam and I the supernatural connections true love creates -- allowing us all to be together, some in spirit, some through legacy and others through physical touch.

{Preparing to Bring Him Home}

2011-12-19T10:00:00.000-08:00

I'm not so sure life could get any crazier right now. Our training with Jayden is in full force and between training and visitation every spare moment of our time is filled with preparing to bring him home. Adam and I are feeling really good about our training so far. The trach doesn't seem much more than any other other the ICU level care we have given both Gavin and Angela in the past. As I keep telling everyone -- we are cautiously confident. Obviously, it is airway and even the most skilled individual should always be prepared for the unexpected. The facility requires us to do a total of twelve trach changes -- three assisted and three emergency, and we each need to do this. I've had so many trach families tell me this is nuts -- we kinda agree, but we do what ever they ask with the understanding that we are not the typical family they train and some people may need that many and more to feel comfortable.

Our daily mantra is: every day is one day closer to bringing him home. I'm sure I'll be saying this until I hate every syllable in that statement. We love this little boy so very much and as each day goes by it is harder and harder to leave him. The staff really do the best they can with the kids but it still is a sad situation and we can't help but be anything other than eager to get him home. I've had so many people ask exactly when this will happen -- we don't know. We are hoping for January but it's just not in our hands. But as always we are trusting that God's timing is perfect. He has yet to fail us so no need to stress, right?

The girls are doing amazing with this crazy time. Madsion is just as much in love with Jayden as we are. She has his photo next to her bed and he is frequently the topic of conversation. Adam and I have always been very aware of how living with siblings with special needs impacts Madison and her world. We would never want her to feel like she is second best -- like we never have time for her needs, big or small. Adam and I both make it a priority to give Madison the time and attention she needs and deserves. Last week we had a Mommie and Madi date night and we went out to the movies and dinner. It was so nice to spend one on one time with Madison despite just now tired this mommie is right now. Adam and I plan on giving Madison one night per week with just either Adam or Myself -- so important for all kids, but particularly those who have siblings with such high needs.

There are photos that we took of the girls one day after visiting Jayden. I of course can't wait till I can show you just how handsome our new little man is but you all know the drill. I hope to be able to show a few faceless photos once we bring him home. For now just take my word -- he is one handsome lookin' little dude.

{The Owens Take Manhattan}

2011-12-12T06:03:00.000-08:00

Yesterday we packed up the girls and headed up to New York City. The city is just about two hours from our house which makes it an easy day trip. Adam and I have always frequented the city since we first met so we know our way around rather well and it's a fun stress free outing. We were so excited to take the girls this year for a few reasons. The first is this is probably the last time they will take a trip just the two of them -- next family outing will include a little brother! Another reason I was excited to go was to see the difference in Angela from her first trip to the Big Apple last year.

We took Angela to New York shortly after she was placed in our home. She was still stimming most of the time and not really able to focus on anything. I think she probably enjoyed the trip but it was probably more of a light show for her little brain and not really a memory making experience for her. This year she was all about the city! She loved riding the subway and gave all the subway passengers a bit of holiday cheer when she giggled non stop each time the train would stop and start. Last year she just sat in her chair and was rather happy -- this year she was able to tell us when she was sick and tired of being stuck in her chair and yelled and fussed like a typical kid -- loved that!

Madison had a great time at the American Girl store and had been planning her trip all month, figuring out what outfit she would choose for Caroline -- her American "Cousin" found on clearance at Target. Very grateful that she doesn't know the difference and we hope that when she does we would have taught her that price doesn't matter and Caroline is just as special!

We met up with some online friends and had a blast enjoying dinner with their whole family -- closing the gap in the twitter universe and actually meeting face to face and having real conversation! We can't wait to take all three kids up in the spring, not sure how we will make that work, but we will find a way to make it a safe and fun experience for our not so little but growing family.

Thanks so much for your prayers for Jayden's discharge meeting. It went really well, and I felt a sense of relief as we left the meeting. The training is crazy, and everyone seems to understand that, which made me feel better. It's just one of those you have to do it this way cause the paperwork needs to be filled out type senerios. We start training tonight on how to wash our hands and then in a few weeks we will finally be able to learn about his trach care. The team understood our frustration and is willing to help us through this and make it as easy as possible for both us and Jayden. We are looking to have him home in January. I'm hoping mid month but there really is no set date.

So excited. I left New York being so happy and feeling so fulfilled. I love my family. I love our life that God has given us. I'm excited as we prepare to bring our little boy home and start this next phase.

{Full Speed Ahead}

2011-12-08T13:26:00.000-08:00

Life is going full speed ahead right now. I find that I'm constantly trying to remember what day it is, not to mention reminding myself to make sure to stay in the moment and not travel to far ahead. We have been visiting Jayden six days a week for the past two weeks and I am totally in love with this little boy. It is increasingly difficult to just visit and not be able to take him home with us, or even just out for a few hours. So very hard.

We are trying so hard to just go with the flow but our hearts are more than anxious to begin this new life with the girls and him at home -- together. It's not that the facility is horrible, as he is getting good care, but it is certainly not a home but rather very much a hospital or institutional setting. This little boy needs a family, he needs structure and he needs major love that only a mommie and daddy can give.

Tomorrow is a big day in our process. We will meet with a few administrators as well as DHS worker and our adoption worker to have a discharge meeting. I'm very anxious. We are in need of major prayer -- we need everyone to come to this meeting with a great excitement to get Jayden home -- soon. The biggest frustration with the "system" is that children's lives are wrapped around schedules of workers. We can only train when a trainer is available -- if it was up to Adam and I we would train everyday to make this happen faster. It's so frustrating and unavoidable.

We are trusting yet again in God's perfect timing but also in his ability to give us the peace and patience we need to get through this difficult process.

The girls are handling the chaos very well. My parents are helping us out with the girls while we spend time traveling each day to see Jayden. Angela continues to regain her baseline and this week we had her central line pulled and she also got rid of her GJ tube and is tolerating her feeding into her belly rather well. She still has some issues but we are working through them and moving forward. Her kidWalk finally came in and we are all loving it! She has lots of work to do before she will actually move in it -- but I have no doubt that it will soon click and she will be off!

Our minds are anxious but our hearts are still incredibly overwhelmed that God would give us this journey to walk. Adam and I had a nice talk the one night coming home about just how amazing it is that God would use us -- two people who are no more special or amazing that any other individual out there, and to trust us to care for the amazing children God has given us both through birth and through adoption.

It seriously blows us away.

{Meeting Little Brother}

2011-11-30T05:58:00.000-08:00

Life is about to get very crazy around here with Jayden's long expected transition into our home and all the training we will be required to complete. It's actually quite overwhelming but we will do anything to bring him home. His care is not difficult at all bit since he currently lives in a medical facility we are required to train on everything -- from how to change a diaper and put him in a car seat all the way up to his trach vent stuff, which is really the only thing we actually need to learn.

It's gonna be difficult -- a swallow our pride and go along with the flow and be as flexible as possible type thing. He is so worth it. Looks like either Adam and I both or just myself and Angela will be making the drive to Philadelphia everyday to be with him. The medical facility is a very difficult place to just hang out. It's so awkward, but again He is totally worth it. Like I posted on Twitter earlier this week -- Everyday that passes is one day closer to all being home together as a family.We will make this work.

Yesterday we brought the girls to meet their little brother for the first time. Madison was nervous at first but quickly fell in love. It probably helped that Jayden reached out for her and attempted to climb up her! Madison quickly become her social self with all the kids there and even told me in regards to an older severely physically limited kid, "He's my best friend, he just doesn't know it yet." Love that girl.

Angela was equally thrilled with Jayden. Angela loves interaction. Many times when little kids Angela's age come up to her a parent often quickly shoo's them away, as if they were a bother -- this couldn't be more disappointing to Angela -- she loves to be social. Jayden had no problem with this and was trying to climb up into her chair to share her seat and play iPad together. So much fun. We left feeling a little overwhelmed about how long this process could be but also full of excitement that we someday, sooner than later, will indeed bring this beautiful boy home to call our own.

I've also meaning to update on Angela's progress since going on TPN -- she's off! Her belly is finally waking up and she has been TPN free for about a week. We even had trialled some eating by mouth and although her gag is a bit exaggerated she is doing great. On Monday we clamped off her drainage from her belly and she is doing fairly well with that. She is having distention but seems to be working through it ok. Our next goal is to try to introduce her J feeds back up into her belly. I'm confident that she will do just fine since she tolerated her purees in her belly -- but again we are trying to take it semi slow as not to disturb the harmony her belly seems to have found.

Thanks for loving our family. We will need some serious prayer as we start transition this week. Please pray for physical strength for Adam and I and peace for the girls as we will be away in the afternoons -- which we could never thank my parents enough for supporting us and helping with their care. Pray for understanding within the medical home and quick scheduling of meetings to determine when we can begin our medical training. And of course pray that we have a supernatural zipper placed on our lips (mostly mine) which will allow us to go with the flow even when it might be difficult.

{Thanksgiving RePost}

2011-11-24T06:04:00.000-08:00

After Adam and I experienced the death of our little boy we were forever changed. Our entire view on life and it's meaning was boosted to a whole new level. I guess no one can really fully understand the frailty of life until they experience the process of death, particularly the death of a child.

After Gavin died I wrote this blog post and will probably rePost it as long as I possible can. These words, coming just weeks after I said goodbye to my little boy, are raw and help remind me the importance of living life to the fullest and truly thanking God for the life he has blessed each of us with.

November 25, 2009...

Growing up I was always taught that Thanksgiving is a time to think about what we are grateful for -- the blessing we have in our lives. I remember in Sunday School making little crafts often times listing the top ten things we are grateful for this past year. In all honesty, do we really actually take the time to think about just how grateful we are. It's weird how our human minds work -- it's hard to recognize the good things in our life until they are gone.

This year my heart is overwhelmed and my mind is just about shot from the countless hours going back and thinking about the past four years. Did I ever really thank God for life? Not only my life but the life of my husband and the life of my children. Life is such a funny thing. We tend to think it's guaranteed -- and then *poof* one day it is gone.

I really feel in my heart that Adam and I tried to make the best out what we were handed over these past several years. But I just have to think back at all the times I should have been thanking God and instead I was looking for a new day, a way out of our situation.

Even when life seems unfair, when jobs stink and children are getting on our last nerves -- there is so much to be thankful for. I remember the day before we took Gavin off the bipap -- I looked at the monitor and just prayed that one of those breaths would be triggered by his own little body. Each time a breath was taken without the ventilator forcing the air in -- my heart jumped with such excitement. My entire being was so focused on each and every rise of my little boy's chest.

If only we lived each day as it was not only our last day of life -- but our last breath.

God -- thank you for life.

{Meeting Our New Little Boy}

2011-11-23T05:38:00.000-08:00

Yesterday was one of those day you just can not possible describe in words -- the day you meet your child for the first time. Adoption or birth -- it's all the very similar and very much amazing. Yesterday we started out our day in the morning heading downtown to the Philadelphia Department of Human Services, who holds the legal custody of Jayden until it's transferred over to us in court. We went down kinda knowing that we were already chosen to be his mommie and daddy, but we still needed to go through a formal interview and look over his more current file and make sure we all felt good about this match.

Interviewing for a child you love and want so badly is one of the most difficult of situations you can place a family in. Just imagine if you had to interview before you were allowed to conceive your biological children -- awkward right? Exactly. But we got through it and all felt total peace that this was indeed the perfect match for our family and the perfect match for Jayden.

Jayden just turned two years old and has been living in a medical facility since a few months after birth when he suffered a non accidental head trauma. It's not my place to give you details but it is a very hard story to swallow -- hard to imagine the suffering this little baby endured. Jayden is a survivor. Many children who sustained his injuries will never recover and many never survive the trauma -- but our fighter did. His heart started to beat again and the life that was once stolen from him -- he stole right back and continues to heal and recover. From what we were told this little boy has overcome so much. He came into care with severe medical needs but now has been able to be weaned off a ventilator and really has minimal medical concerns.

The brain injury left him impaired in many ways but he is full of personality and typical two year old spunk. He has cortical visual impairment just like Angela, has a trach to help prevent aspiration due to his inconsistent gag reflex and has a g-tube for feedings. He is just learning how to walk with the assistance of a walker but this kid is a mover -- from what we saw yesterday he is a little boy on the go with things to do and places to explore!

It was heartbreaking to see him in the environment he is currently living. The staff have taken great care of him to the best of their abilities but it is still an institutional setting with rules and regulation that prevent any child from living a normal life and receiving the consistent love and attention they need and deserve. It breaks my heart to think that this little boy has never known what it means to have a home or even the concept of a mom and dad. Needless to say leaving him was difficult.

This process is going to be a bit more complicated than it was when we transitioned Angela into our home. Since he is in a medical facility they have their own guidelines on amount of training hours needed and length of transition and a whole bunch of other stuff. We are going to make it work. We are ready for the long haul and praying that God makes a way for this to be easier than anyone ever expected. For now we will begin visits hopefully this weekend or next week, which we are hoping will be several times per week with both Adam and I and then I'm hoping to be apart of his therapies and also his doctor visits.

Can't wait to bring him home -- give him a place in this family and live an amazing life together. Trusting God once again and believe that his timing is simply perfect, no need to stress or have anxiety knowing that the details of our new little boys life and placement into our home and have already been worked out -- we're just along for the ride!

{Seeing His Glory}

2011-11-21T11:38:00.000-08:00

In the last months of Gavin's death, while we watched his body fail and his horrific suffering, I like any normal human being would have times where I pleaded with God to show me just how this -- the death of my little boy could play any part in His plan for our families life. At the time it was very hard to see -- but Adam and I trusted and believed that one day we would understand why Gavin's life played out in the manner that it did. I remember after his death while I was training for my first triathlon, running on the treadmill listen to the song, Show me your glory. I've mentioned this song before, but it basically is a cry to see the the Glory of God -- the intense awesomeness that our human minds could never possible comprehend. I begged God to show me his glory in my life -- in the death of my little boy. This song carried me through may difficult times of intense grief the months following Gavin's death -- each time I would cry out for understanding and each time He would give me just enough.

Last week after an early morning trip to the gym this song came on as I was driving home. I had this crazy moment of understanding that literally brought me to tears. It hit me -- This song no longer is a cry of my heart but rather a reminder of the His amazing Glory that I have seen. So often people beg to see a glimpse of his awesome power and blessing and yet do nothing to seek it out. I have found that it has been through adoption that Adam and I have seen the intense reality of who and what God is all about. We have looked into a child eyes who was once deemed unwanted, broken and damaged and reclaimed them as wanted, sought after and perfectly designed. This is a glimpse of what God's glory is all about -- helping those He loves -- extending the same grace to others that was places on us. And the best part for me to wrap my mind around is that our ability to do this is a gift that our little fighter left us behind. It doesn't take away the loss or pain but it gives me understanding, peace and excitement to know that his life was not in vain. As I drove home my heart and mind was overwhelmed with a deep level of gratitude that He would allow us to walk this journey.

I can't even begin to tell you how excited we are to welcome a new member to our family. Tomorrow we most likely (as long as everything goes ok at DHS), will meet our new little boy and once again our life will be forever changed. My anxiety is through the roof as there are so many unknowns. The feeling of that first encounter is incredible but also filled with nerves -- there is nothing like being watched an analyzed as you meet your child for the first time. How will he react? How will the staff in the facility perceive us? How will DHS perceive us? All these things are running through my mind. Please pray that Adam and my nerves will be calmed so we can simply enjoy our day. I know it's gonna be amazing, I just have to make sure I limit my caffeine intake tomorrow morning **wink**

God is so good. Everyday I am blown away that he would choose me -- Karen Owens. I'm nothing special. I have the same downfalls as your average women but God's grace is overwhelming. Can't wait to blog about the littlest Owens!

{Growing Our Family -- Again}

2011-11-15T07:35:00.000-08:00

For the past ten years I have sat back and watched God do some amazing things in my life. I can't say that there has been any one thing that was a fireworks, bright lights and heavenly choir singing moment -- but rather it's been the crazy way God has orchestrated the details in my life -- in our families life, to begin to tell this amazing story of grace, hope, restoration and joy. This season of our life is no exception -- He has totally done it again.

As most of you know we have been looking to grow our family through adoption -- another amazing child to call our own and to have a place in our home and hearts. Yesterday we received a call that our match has been found and we will be able to meet him -- a beautiful two year old little boy -- early next week after we visit DHS and talk with the worker. So excited! Of course we still can say no if we were to feel like it's not right -- but I don't think that will happen. When I got the call I wanted to just explode with joy. But there is way more to this story -- it is mind blowing just how this little boy came into the picture.

Back in the early spring, on a lazy Saturday morning, Adam, the girls and I were sitting in the living room watching the morning news. The weekly Wednesday's Child feature came on, which is a program that features stories on children waiting for adoption. This beautiful amazing little boy was featured and my heart melted in that I know your mine, how can I bring you home type way. But, Angela was just placed with us. The time was not right. We needed time learning how to be this type of family -- time to enjoy each other and time for our love to grow and bond. This little boy never left my mind. I thought about him so frequently since that first moment I saw him.

After Angela's adoption was finalized Adam and I stared to throw around the idea of bringing another child home into our family. We knew we wanted to, we just were not sure when. It was after Adam and I both listened to a sermon at church about chasing after the destiny you know God has for you - getting out of the boat -- taking the first step and allowing God to do the rest -- we finally made decision to open our case back up and try to find a match.

We inquired about this little boy but to our disappointment we were told he was already matched with another family and that we were just too late. Ugh. My heart sank so deep, but also was trying to be happy that this little boy had found a home.

A few months later Adam and I attended an adoption conference for both families and workers to gain credits towards our adoption certification -- great conference but again, crazy stuff happened there. It was time for lunch and Adam and I didn't really know anyone there to sit with. We got in the back of the line and after we got our food we sat down at a table with only two women. After eating a rather silent lunch one of the women asked us if we were a family or if we were agency workers. We told her that we were an adoptive family and told her a little of our story. Then she replied -- I think I know you -- I've read all about your story. It was the little boy's recruiter. Amazing. We exchanged a few words and we expressed our happiness for him that he found a family but also our disappointment. The conference went on and we went our separate ways.

We continued on and looked at a few different kids but nothing really was going through. Nothing that really felt totally, completely right. As I was looking though adoption databases I noticed that this little boy was still listed for adoption. I knew that this happens a lot as even Angela was listed for a bit after she was with us. I inquired once to our worker who confirmed what I was thinking already -- he just wasn't taken off yet. But then yesterday happened.

Yesterday I just couldn't get this little boy out of my head. I searched online for the email address of that recruiter we happened to sit with at the adoption conference. I just wanted to ask one more time, and if the answer was still no I promised myself that I would let it go. She replied within a few hours and confirmed once again that this little boy was not available. Ugh. I called Adam and vented my frustration. He agreed and shared my disappointment.

Then it happened.

Not five minutes later our adoption social worked called me. She asked if I was sitting down. She told me the family fell through and they would like to match us with this little boy. Oh. My. Goodness. I told her that I was just in contact with his recruiter and she was unaware that this contact had occurred just a few hours earlier -- in fact it was DHS that contacted her not the recruiter. Wow -- just wow.

I am still in total happy shock. We go to DHS in Philadelphia this coming Tuesday to chat and if we feel comfortable we then will head over and meet our little boy for the first time. So exciting! Madison was head over heels when we told her. She too has been particularly attached to this little boy and even after we told her that he was matched with another family, his name has frequently come out of her mouth. So excited to begin the process of bringing him home

We will save all the details for after we meet, just to make sure everything goes through. So excited to share this next page in our story with you all! Enjoy the photos of Angela -- so alert and looking! Poor Madison is hard to catch on film these days -- she's a big school girl now!

{Visiting Gavin and a Short Hospital Stay}

2011-11-11T13:23:00.000-08:00

On Tuesday we spent some time as a family at Gavin's grave. We sent up a dozen green balloons to our little boy and also ate some yummy cupcakes, and made sure to leave one behind on his gravestone. I know I've said this before -- but I couldn't possibly describe what if feels like as a mother to have all my children physically in one place. Even though I fully know and believe that it's only Gavin's sick shell that is buried in the ground -- it's still the body I gave birth to and the body I was able to hold and care for, for the short time he was here on earth. The feeling of sitting on the very ground that holds his physical body, and at the same time hold Angela and Madison, brings my mommie heart and mind such a feeling of wholeness.

Besides taking time to remember our little boy, we also have been dealing with Angela's belly issues this week. On Tuesday before we went to see Gavin, Angela and I headed down to duPont for an abdominal xray to see what was causing the pain in her upper abdomen.

The xray showed lots of small bowel dilation and also showed that she still had barium that was used in her j-tube placement almost three weeks ago. Her little belly is still struggling to wake up and is just not moving.

On Wednesday her pain seemed to increase and after draining a yucky thick green-brown drainage out of her g tube since surgery all the sudden it just stopped. This, added to the increase is belly pain made us a bit concerned so we headed back down to duPont for another xray and some blood work. After looking at her xray they decided that Angela needed to be admitted.

Angela basically has a Pseudo Obstruction -- meaning that things just stopped all together. They attempted to clean her out thinking it might help her pain but despite running the Golytle all night nothing happened. But for some reason the next morning her drainage came back and her pain seems to have gone back down to manageable. No one really knows what happened and why the sudden stop and start, although in the wrong direction, but we'll take it as she is comfortable and happy. So we were able to come home yesterday evening to heal at home.

We are giving her belly time to rest and heal and will go back down to duPont on Monday for some additional studies and to see if things are moving just yet. Despite this second setback she is still doing great! Today we went to the indoor track at the YMCA and Angela practiced taking steps and made it half way around the track! Today I decided to use leg splints to give her extra support and she seems to actually enjoy the walking. Most of the time I used my toes to push her feet forward to step but occasionally she would flex and take a step on her one -- big exciting stuff! We are still waiting on the KidWalk, which I was told today should be in by the 18th. I'm not holding my breath on that, but rather trying to use this time to help strengthen her so she will be nice and strong when the gait trainer come home!

{The Day He Died}

2011-11-08T12:09:00.000-08:00

I remember the first time Gavin's doctor had the talk with us -- you know, the talk where the doc eludes to the fact that your child will have a shortened life, though the word death is not used, only implied in the dark gloom in the physicians eyes. We probably had that talk over twenty times, Gavin just kept beating the odds. Infection after infection he would push through, even as more organ system begun to fail he still somehow was able to keep his little heart beating -- he fought so stinkin' hard.

By the time we had our last talk and the words were actually used I think I was almost in disbelief. Gavin had full blown pulmonary edema. His ANC, his ability to fight infection, was almost zero. His little body was colonized with fungus. Yet I told our doc that I wanted to take him home -- I felt in my mommie heart that I could make him all better -- at home.

And we did just that. Ok, so it only lasted about six hours, but I think I really needed those six hours so begin to truly see the horrible suffering taking over my little boy's life. I drove Gavin home alone that night. Seriously, I can't even believe it. He was on 4liters of O2 and on a biPap system working as a vent. He alarmed the entire hour drive home. It was my mommie's gonna make it all better adrenaline that helped us both survive that car ride home.

Adam and Madison met me out at the car and we carried out little boy in the house. I held Gavin out flat in my arms, as he was unable to bend, Adam grabbed all his IV's including his TPN, antibiotics and his morphine pump, the ventilator and the huge tank of O2 and Madison grabbed the vent tubing and we slowly carried our little boy home.

Wow -- looking back my heart and mind sees such a beautiful image of what our family is all about. It makes me hurt and smile at the very same time - speaking to my soul on such a deep level.

Can you feel it?

We loved that little boy more than words could describe. We would have done anything to give him a life full of experience and quality.

After a few hours at home it was clear that Gavin was leaving us. His temp spiked high and he was no longer being supported on the home vent as it was unable to give him enough support and O2. We knew it was time to go back. We differ from many families in that we didn't want our little boy to die at home. I didn't want our home to represent death. I didn't want to have to go back and ever see the very spot where he left this world -- so we took him back for one last time to the place and people that walked us through three and a half amazing years -- the place that helped us keep him alive for as long as we did.

From there on is a blur -- and I like it that way.

His last days were filled with so many tears but also so many smiles and laughs. I never once imagined that the moment of his death would bring such amazing comfort and joy -- but it did. It was all apart of the process. We lived witness to his suffering for so long that by the time he took his last breath it was as if he finished the marathon he had been running all his life. Of course their were tears of grief, but the overwhelming joy that our little boy was finally free from pain and suffering -- free from the body that held him prisoner -- it was simply breathtaking.

Today I mourn his death, but my heart celebrates his freedom.

{Looking Back Two Years}

2011-11-07T06:15:00.000-08:00

Today I've been thinking a lot about just where we were two years ago -- as we were sitting by our little boy's bedside waiting for him to take his last breath and finally find the peace and healing he deserved. I'm not sure anyone could have possibly prepared us for that last marathon -- the period after we took him off life support. Everyone assumed he would peacefully die in my arms after the ventilator was removed, after he had not taken triggered any breaths on his own for over 48 hours. They thought he may last a few hours but no one dare thought he would fight for 52 more long intense hours. Gavin never did follow the rules, not in his birth and certainly not in his death.

Those last 52 hours, at that time, seemed like a nightmare. after we had held Gavin, had Madison say goodbye, and after all the doctors gathered to pronounce his death and as the vent was removed, we mourned and said goodbye. After death didn't happen, we mourned, grieved and said goodbye another ten or so times until it actually happened. Ugh. What a mess. Adam and I didn't sleep and only would eat what people would bring us to the bedside.

We spent those 52 hours engraving the memory of Gavin into our hearts. Seriously studying ever inch of his swollen little body. In the last 52 hours of his life he layed on the bed in a diaper with no blankets. I remember stoking ever square inch of skin on his body -- and to this day I remember how it felt. I remember the scent, I remember the color, I remember finally coming to the harsh realization that this no longer was my little boy -- it was just a shell, a shell that was falling apart and ready to die.

So many things went wrong in those last 52 hours. Gavi's doctor was out of the country and no doc could possible give him the same care -- no doctor could possibly understand just how complex and how not by the books our little boy was. There are so many things that I could be angry about surrounding his death but looking back I treasure every moment those circumstances gained us.

God knew what he was doing.

So many times is life when we are in the midst of the struggle we fail to see that the issues that cause us turmoil and pain might be the very things that in a few years we thank God for. God gave me those last 52 hours to memorize my little boy -- the sounds, the scents and gave me time to come to the place in my own heart and mind where I could see that this swollen shell no longer was a good home for my fighter -- that he needed to be in the most amazing arms ever -- the arms of God.

After Gavin died I tried to hold his body. It only lasted a few seconds -- My mommie heart knew that he was no longer there. I couldn't feel him -- I felt his body, but the Gavin I knew and loved had already left and the shell he left behind really had no meaning. I layed his body down on the bed and both Adam and I gently touched his cold skin and said goodbye.

I don't claim to understand why God choose Gavin to live a life of suffering and endure a difficult death -- but I choose to believe that God prepared Gavin for his life here on earth and what we may have viewed as painful suffering, Gavin perceived as once step closer to the most amazing reward ever -- heaven.

So much I don't understand. But by choosing to find hope, joy and peace, I am ushered into an amazing place of healing. Healing that by most would be incomprehensible. I mourn the loss of by baby boy, but at the same time I feel him closer than ever. He no longer is my child to watching grow here on earth but rather is simply woven into my very being.

As we remember his death, I choose the celebrate his life.

{Healing, Yoga & Progress}

2011-11-04T14:25:00.000-07:00

Home is so healing -- even after returning home only to lose power due to a snow storm for four days. Angela is doing great. Her feeds are up at 20ml/hr and although she had some retching today she is still making progress. Her belly is still draining a think green liquid so we haven't even attempted to clamp it just yet. I think we are going to try to get to full feeds and then work on getting rid of the yucky drainage bag. No matter what -- we are listening closely to what Angela's little body is telling us and trying to keep it happy and healthy and moving forward, and so far our plan is working. I really hate TPN, but I have to say Angela has more energy than I've ever seen. I have faith that once we get her in a better nutritional place all around I feel like the energy will continue even after we are off the IV feedings!

In other great news it seems like Angela's swallow has returned to about the same strength as it was prior to the fundo surgery. After surgery she was choking on her own secretions and unable to swallow anything. Yesterday I trialed her with some applesauce and she did fantastic! Despite the thin consistency she was able to swallow with no problem. I have great hope that once her belly is ready to tolerate volume she will be rockin and rolling. I have a million containers of her special high calorie food just waiting for her to enjoy -- can't wait, but again we are taking it slow and listening her her little body.

I have no regrets of our decision to do the fundoplucation. Angela is a different girl. She is vocalizing so much -- sometimes for over an hour of constant babble and exploration of different sounds. She is so proud of herself! She seems free -- vocally free. Before she was so guarded since her reflux was so bad -- she was constantly refluxing even her own secretions, it didn't allow for much freedom in fear that she would vomit. She is just so amazing. Social she is blooming. To listen to her talk and interact back and forth is so beautiful. She is truly a beautiful display of God's amazing ability to provide both healing of the mind and body. So cool.

This week Angela began a Yoga class at our local YMCA. The class is geared towards children with disabilities and other kids like Angela. Angela was a super star -- she totally loved the class and was eager to nod her head yes to anyone who asked her if she liked it. The poses where very challenging for her tight hamstrings but she let me work her through them and we got an amazing stretch. She was able to bear weight on her legs and even was able to stand in tree pose on one leg with me giving support on her bottom and holding her arms up. So special -- we are so grateful that our YMCA offers these amazing programs.

Seeing God's hand on Angela's life and progress is amazing. I truly see if as a gift directly from God to me. After watching the suffering of Gavin -- my spirit needed this, and God knew that when he placed her in our family. This coming week we will remember Gavin's death and also celebrate his life -- what better way to find peace in his death but to be able to see this amazing outcome -- the ability to be this kind of mommie to both Angela and Madison. I see it as not only a gift from God, but also just maybe a little gift from my baby boy.

{Home Sweet Home}

2011-10-28T14:15:00.000-07:00

Yesterday We were finally given to go ahead to come home and begin to heal! Angela is doing so much better since leaving the hospital -- maybe not so much physically but emotionally she is back to her happy little self. Home is amazing -- it's amazing how when you are surrounded by love and comfort and when the threat of people constantly poking and prodding in taken away, how much healing can occur.

Angela came home with a central line and is on TPN for all of her calories. We are trying to push feeds thought her j-tube into her small bowel but we are going to take it very slow, as to not make her belly angry. We will keep pushing her rate higher and higher until we are at goal and then we can get that ugly line out of her chest!

This hospital stay was so difficult -- but we got through it and now that I've slept in my bed and had a nice shower I can say that I've once again have gained my perspective back. Caring for a medically complex child can be so difficult, but I must say that there is so much beauty that can be found in it. The ability to serve Angela on this intense level is very special. I fully understand that not everyone could do it -- it blows my mind that God would choose Adam and I to meet her every need -- to give her love and a place in our family but also meet her needs medically.

We are ready to begin life again. Angela and I hit the town today. We headed back down to duPont for her six month Opthamology appointment, we did a little shopping, went to the grocery store and came back home for a meeting with the home infusion company. Life is back to normal!

Angela rocked out her Opthamlogy appointment. I'm not totally a fan of her Opthamologist, as she is the one who didn't want to give Angela glasses at her last appointment. Her view is that patients who have cognitive issues and don't present as if they are even trying to look should not have glasses. I totally disagree in a huge way. Ok, so maybe some children will have no response to the increase in vision, but I'm sure there are a million who would. Every child deserves the chance to see, no mater what there cognitive level. Angela was very attentive to the doctor, waved hello and goodbye and even threw a little temper tantrum. That's my girl. Rest assured that Angela will get her main eye care from the Low Vision Clinic at the Eye Institute, but I still want to keep her at duPont in case we ever need anything more from them.

Thanks again for supporting us through this little bump in the road. We are home and as you can see by these photos she is on the way to healing.

{Surgery Day Thirteen}

2011-10-25T11:33:00.000-07:00

Life is all about perspective. I was thinking this today as I was laying next to Angela in her bed listening to her fuss, as her belly is still bothering her. This stay has been so difficult for various reasons but in the end it will all be worth it. Choosing to take a different perspective and see the outcome of our current chaos is a very beautiful thing. Many people I'm sure ask why on earth we would want to so this again. My answer to that is this: I'd do it again a million times for a million different kids. A few weeks or months of our own personal hardship -- not having great coffee, no sleep and a cold shower is all worth the quality of life we are striving to give our children.

Again -- it's just all about perspective.

Today has been very quiet. Almost too quiet. Angela continues to be a bit fussy but not as bad as the past few days as we have lowered her feeding to only 10ml/hr just to keep her belly stimulated. She did great on her first night of TPN and her labs look pretty good this morning. Tonight she will go on full calorie TPN and we will wait and see how things need to be adjusted.

I'm not sure what the plan is as far as going home. I kinda got the sense that we will be going home on TPN and working on feeds and getting her off the IV in the next week or so. Part of me is thrilled with that, as I just want to get the heck out of this place, and the other part of me who already knows the reality of what life on TPN is like is a bit more hesitant. We can do it. We will do it. We will do whatever is best for our little girl.

Tonight Adam, Madison and my mom are coming for a visit. Very happy to see my little bigger girl -- miss her so much and although face time on the iPhone is great, it certainly does not replace the real deal!

{Surgery Day Twelve}

2011-10-24T15:23:00.000-07:00

Today was another stressful and eventful day! Last night Angela once again did pretty well with her pedialyte through her j-tube - but again it's just not good enough. Today Angela went downstairs to have a PICC line placed so that we can give her nutrition intravenously and give her belly a break.

After about thirty minutes into the procedure the team came out and told me that they were unable to place the PICC due to Angela's poor vein access. They decided that a central line would need to be placed. This line is kinda the same as a PICC but the risks are much greater as the catheter in down deep near her heart.

We have a long history with Central Lines -- I hate them. Actually I have a love hate relationship with them. They saved our little boys life and will do the same for Angela, but my view has been tainted by the too many to count infections. But again Angela's underlying condition is very different, but I can't help but feel anxious for her.

So tonight she will start TPN and give her the much needed nutrition she needs and deserves. The plan is to keep running the pedialyte at 10ml/hr and then start to slowly switch over the half strength formula at the same low rate. It's going to take time. I'm not sure what the long term plan will be -- if we will stay here or will go home with the line. The thought of doing TPN again at home kills me but of course we would love to go home and we would totally make it work.

Angela's GI issues are most likely stemming from a crazy autonomic issues she is having due to the surgery. Her BP is through the roof, she is flushed and breaking out in stress rashes, her heart rate is all over the place and her bowel are just not receiving signals from her brain to move and process the food we are giving her. Again, she will get better and clinically she is doing just fine. It's just a waiting game for her body to calm down.

In other news, Angela and I went shopping in the gift shop today for some hair accessories. That makes it all better right? Angela's hair is way out of control and I'm going to work some magic in the morning to try to tame her afro. Not only will she be pretty but we'll have something to do to break this horrible boredom!

Never lose hope.

{Surgery Day Ten & Eleven}

2011-10-23T14:03:00.000-07:00

I pretty much don't even know what happened yesterday so I'm just gonna skip it. Well actually, I do remember last night and that's most likely because I actually got some sleep -- a very rare event. Last night Angela ran pedialyte through her J-tube at 40ml/hr and did rather well! She woke up a few times but I was able to just give her her Binky and she would go back to sleep. This is great news and in my opinion it's great progress.

However, our little girl is still struggling. She is down almost three pounds since her admission and three pounds on her little body is huge. Her weight is down to 19lbs and when undressed she certainly makes me feel uneasy. I think everyone feels the same way, and that's why we need to come up with a better plan.

We know her gut has not woken up from surgery just yet. It is slowly making progress, but it's a little too slow for the doctors liking. She is draining out her g-tube and is a nice dark green slime, which again confirms that she is just not where she needs to be. Because of this we need to get her nutrition and the plan is to place a PICC line in the morning.

I have so many fears about going this route, so many fears that stem from Gavin's life involving the horrible central line and infections. I know things are different and Angela is not sick like Gavin, but it's still scary for me to think about. I'm trying to focus on nutrition. I really think once Angela gets some nutrition her progress is going to speed up even more and we can get the heck out of this place.

Today at the hospital was the annual remembrance service - remembering all the children who have died, including our little boy. Talk about bad timing. We got through it, but it was difficult -- even more so when we are already emotionally and physically drained. But as always it's nice to feel the pain even if it hurts very bad. I just can't describe how special it is to hold a photo of Gavin up to Angela and tell her this is her big brother. Wow. It just takes my breath away.

Thanks for loving our family!

{Surgery Day Nine}

2011-10-21T18:16:00.000-07:00

This morning things were looking very bleak. Last night Angela was unable to tolerate feeds and also lost her last possible peripheral IV line. The doc came in and said that she needed a PICC line and TPN to give her nutrition as she has not eaten in over a week. After some discussion I asked if we could give it one last shot at the GJ tube placement and he agreed that it was worth a last shot.

We took Angela downstairs to international radiology where they tried to get the GJ in. After about an hour flipping her all around in various positions he was able to break through her pylorus and get the J portion of the tube nicely into her jejunum! Everyone in the room was so happy -- but not nearly as happy as Angela and her mommie!

So today we have begun to attempt feedings into the J. We know her belly is still fast asleep and is not working right now. So far her J is doing better but now we are having some pain and issues. Currently we are at 30ml/hr of pedialyte and things are starting to back up. We are giving her some time off and then we will go at it again. Once she can get to 40ml/hr we will switch her over to half and half formula and pedialyte.

Poor girl. She is really struggling. Her skinny bones, heart rate and floppiness show a little girl with no nutrition. We really need this to work for her. We all know it will eventually and I've been assured that this does happen after surgery for some kids, particularly those with neurological issues -- but it's still hard to watch.

Speech came by this afternoon and also reassured me that many kids need to relearn their swallow after the fundo, but that they have seen many success stories. Unfortunately they can't really work with her until she is up to full feeds. I'm hoping to at least connect with them before we leave since we do not currently have a feeding therapist at home. Once we are discharged will be be looking for a program to start, maybe at CHOP where we get her PT.

Thanks for praying us through this. We are all doing just fine -- just very tired and ready to continue on with life. Adam and Madison will stay the weekend here at the Ronald McDonald house until we go home.

Never Lose Hope.

{Surgery: Day Seven & Eight}

2011-10-20T16:55:00.000-07:00

I just didn't expect to be writing a day seven and eight post -- but it is what it is and we are trying to make the best of it. Things here are just plain old frustrating -- we're not upset with anyone and I'm certainly not upset with Angela but just simply frustrated that her little body is not allowing her to eat. After not tolerating her g-tube feeds, which is the tube that goes right into her stomach we decided that she needed her GJ back. After three separate attempts to place the tube we have had no luck and we are still without the needed J-tube, which would bypass the belly and go right into the intestine. This is all due to her lack of motility in her belly. She has always had bad motility but due to various reason things have taken a huge turn for the more difficult.

Today Angela was officially switched over to the service Gavin was on. Ugh so difficult, yet so needed for Angela. The doc decided to try once again to push feeds though her G- tube. So far tonight it's just not working. She is wretching and when we vent her tube all the fluid just pours out -- her belly is just not working.

We also are going to get with speech tomorrow to look at Angela decline in her swallow ability. We feel she may need to have a swallow study to check to see if she is aspirating her saliva. Difficulty swallowing is to be expected after this surgery but we just need to explore the issue so we can help her to get back on track faster.

After another six IV attempts last night the on-call anesthesiologist was able to place a line. The line is barely hanging in there but we have been told that this line needs to remain as long as possible as there are not many other options that are not more drastic.

Not sure what it looks like for going home. Angela needs to be able to tolerate some kind of feed. I just know she is going to turn around soon. She is feisty and wants to go home just as bad as I do. Thanks so much for all your prayers and support!

{Surgery Day Five & Six}

2011-10-18T11:19:00.000-07:00

Wow. This hospital stay has been filled with so many ups and downs. Yesterday was feeling like a rather down day. Angela is not tolerating any feeds given by mouth or by g-tube. The issues with the feeding by mouth is to be expected. The surgery altered the way her swallow feels and if you add on inflammation in her esophagus as well as her floppy tone it really makes for a difficult obstacle for her to deal with. I have all faith and hope that she will once again be eating by mouth. It will come back better than ever but it's going to take time. So for now we need to come up with a plan.

Since the g-tube feeds are not working do to her poor motility and also the fact that she is still healing from major surgery, we are going back to the J-tube feeding. This basically is just a longer tube that will bypass her belly. This worked for her before and I know it will again.

There are a few other issues that we are learning about Angela that we need to address, which are things that just got missed until now -- her first stay in the hospital. Right now Angela is being seen by the surgery service but tomorrow she will be transferred to the Diagnostic Referral Team, which are basically the team who takes care of the kids who are complex and need management of numerous specialists. This is very hard for us as this is the team that took care of our sweet Gavin. But Angela deserves the best care and we will do what she needs.

Angela is having some blood pressure issues as well as some possible obstruction at night which is giving her destats in her O2 levels. Some of this is just from surgery and will hopefully resolve -- but we still need just to make sure. She is also having issues with choking on her saliva, but today she actually seems to be doing better handling her secretions.

Thanks so much for all the support you give us. We are so lucky to have the massive support standing behind us. It truly enables us to live this life. In a few days we will be back to normal life - lovin' every moment of it!

{Surgery Day Four}

2011-10-16T17:43:00.000-07:00

Last night Angela had a very difficult time. After she was not tolerating her g-tube feeding of slow drip formula we switched her over to pedialyte hoping that it would give her some relief. Her gaging progressed into full blown vomiting and just made her one unhappy little girl. They decided that her IV needed to placed back in. Angela is a very difficult stick so after about 6 attempts and several different departments trying a line was placed.

So at around 4 in the morning we all got to settled in, her vomiting calmed down and we got about 45 mins sleep. Nice. Today has been a little better. No feeds are running so her belly is much happier. She continues to have difficulty swallowing and often will often choke are become angry and frustrated. She doesn't seem to be in much pain, which is a huge bonus. All these issues are all very much to be expected. The little girl I kept telling everyone was so simple -- probably is a bit more complex than I view her. I like to think positive.

This afternoon, Madison and I had some much needed time away from the hospital. We went on a special date out to lunch and then rented a movie and headed back to the Ronald McDonald House to watch the movie, which really meant Mommie got to take a small nap and Madi clean my purse out of a bag of peach gummy rings.

It was so nice to spend some one on one time with my big girl. She is so amazing and I love spending time with her and hearing how she is coping and dealing. Adam and I always strive to make sure she knows she is so stikin' important to us and her needs are just as important as Angela's. So far so good.

When we got back I learned that poor Adam pulled Angela's g-tube out. This is an apparent crisis to the surgical resident as we are now stopping all meds through the g-tube and heading down top x-ray to check placement -- even though she has stomach contents coming out into her drain -- but it's all good. I'll pick and choose my battles.

So as I type, we are waiting to head downstairs to solve our apparent crisis. Praying for sleep this evening. I'd be happy with at least one hour.

{Surgery Day Three}

2011-10-15T15:35:00.000-07:00

So about yesterday -- forget everything I said that was associated with the word easy. Actually, that probably just my exhaustion setting in cause truth is Angela is still doing really well. She has no pain and is her happy spunky and sassy self. We are experiencing a few bumps but really she is doing just as we would expect.

I jumped the gun in thinking that this would be a stress free visit. Not that I ever really believed that but as of yesterday morning things were looking pretty darn good. The issues that we are having now surround her ability to tolerate her tube feedings. Angela has two issues. One is motility, which causes her stomach to empty poorly and the other is her reflux. The reflux was reason she had the nissen -- so that she would stop throwing up every time we fed her or even looked at her in the wrong way. But the poor motility is still there. Angela did so well on J-tube feeds, but after the nissen was placed the J was pulled and just the g remained. Her belly just isn't handling the volume. But there is an answer for that -- just go back to the J for supplemental feeding. The only issues is that it's a weekend and getting things like that done are very difficult. So we wait.

The other issue is that we tired to feed Angela today and she is having swallowing issues. To be honest I don't know what in the world she is doing. It looks like she is vomiting but, obviously not from her belly, but rather it looks like she is holding it in her esophagus and then she wretches it up. So sad to watch.

Truth is today has been difficult for many reasons. The main one right now is that I'm just so tired. I do not sleep here at all. I know things really stink right now but I'm trying to keep focused on our end goal -- going home and helping Angela to have better quality of life.

For now we just take it second by second and try our best to stay sane.

{Surgery Day Two}

2011-10-14T10:30:00.000-07:00

Angela is doing amazing. Thanks you all for your prayers for our family and our little girl -- they are obviously working as Angela is recovering faster than anyone thought she would. This morning she got a bath and get into her wheelchair and we took a walk around the hospital. This afternoon she took a nap and has been sitting in her Childrite chair playing with her iPad and other toys. Even though she required lots of morphine last night, today she has gone without narcotics and we have just been giving her Tordol every 6 hours. God sure did know exactly what we needed for this stay.

Yesterday I walked into this room with such heavy grief and sadness -- God knew that we needed this to be easy. I realize life doesn’t always work that way -- trust me -- we have walked through seasons where it seemed like the black cloud would never lift. But not right now. We are in a season of healing and restoration and I totally feel God’s handy work in orchestrating the details of this hospital stay.

After Gavin died and we begun to start the adoption process, in no way did we ever feel that we needed to replace Gavin. We welcomed Angela into our family as a unique individual. But as I’ve been sitting here spending lots of quality time with her I can’t but help feel my little boy through her. And I think that’s ok. Angela is my special gift on so many levels. I look at her and don’t see Gavin but rather I see the result of his life and of God’s beautiful plan for our growing family.

After Gavin died God really used the analogy of winter and spring to walk me thought my grief. Winter being the deep pain and mourning -- where the ground is hard and cold. But in that hard cold ground is life just waiting to come to the surface once the warmth of spring arrives. We are fully in our season of spring -- and Angela’s life is part of that beautiful thing that grew from our season of harsh winter.

Not sure if that makes sense -- but it does to me and it give my mommie heart a beautiful peace and excitement for our future as a family -- for all of us, Adam, Madison, Angela, Myself and our new child waiting to be found.

God is amazing. Never doubt that what appears to be an unbearable season of pain and hardship could be the very season that God uses to bring healing and wholeness to you personally and to the world around you.

{Surgery Day One}

2011-10-13T14:44:00.000-07:00

Today Angela was admitted to duPont after she had her Nissen Fundoplucation done. Angela had this surgery because she was vomiting almost anything that was put into her belly. She has learned how to eat and enjoy food over this past year and we would love for Angela to have the chance to eat all her food by mouth without vomiting so she can grow and develop.

The surgeon came out and told us that everything went beautiful and actually was pretty easy. Of course in the Owens' world easy is a bit of a foreign concept -- one that we certainly can get used to! Originally Angela was supposed to go to the ICU after her surgery, but due to lack of beds and the fact that she is doing really great we were able to come right up to the floor.

The downside to all this is we were placed on the very same unit that Gavin died on -- very difficult. I kinda knew it was a possibility but didn't really think it would happen. When I heard them mention that we were going to 3E my heart started to pound. Once we got up here to the floor so many difficult memories started going through my mind -- seeing the equipment, the bed, the staff -- just so difficult. But I let myself feel it all, had a little cry and now I'm feeling much better and once again thankful to God and also to my little boy for giving me this amazing little girl to care for and to walk through this surgery with.

Thanks for your prayers! Hoping these next few days will be nice and quiet. Pray Angela can come off her oxygen, keep her pain under control and that we can get her up and playing.

{Surgery Tomorrow}

2011-10-12T03:28:00.000-07:00

Tomorrow Angela will be admitted to A.I. duPont Hospital for Children for her Nissen Fundoplucation. We have been anticipating this day for a while and in many ways I'm glad it's finally here and in other ways I'm dreading every second of it.

This admission comes with so many different emotions. First off -- it stinks for Angela. A hospital stay for a three year old is a very scary thing, especially when they are not a frequent flyer. Add in the fact that Angela is visually impaired and will most likely not be able to visually comprehend the new environment, and it sends chills down my spine. I know she needs this surgery and it will greatly improve her quality of life, but this next week is going to be very difficult for us.

Then there is the other emotional level for Adam, Madison and I. The last time we were inpatient at duPont was when we last said good bye to Gavin. Ugh. Even though I've been back to the hospital more times than I can count since his death, this is a whole different ball game. It's ok. It will be nice to remember, but I'd be just plain silly to say it will not be painful and difficult on many levels.

But I know we will get through just fine. In fact, I kinda have this feeling that God will be speaking to my mommie heart on so many levels this coming week. It was because of my little boy that I am now able to be this amazing little girl's mommie. It's gonna be deep -- maybe a bit painful but gosh I know it's gonna be so stinkin beautiful.

Please keep our little princess in your prayers. Specifically pray for her mind and spirit. She has come so far in her ability to feel safe in her world, to allow people to see the real Angela and not revert inward to find comfort. Pray that God would protect her progress and make this a time of continued healing for her body. We are hoping and believing that in a few weeks Angela will be able to eat by mouth with no discomfort or vomiting. With her increased ability to eat orally will come amazing development -- and we are so excited for Angela. She deserves this and I know she will cope and recover in typical Owens style!

{Growing a Family}

2011-10-11T05:34:00.000-07:00

I never once thought that in order to grow my family I would need to be trained and educated before we welcome our child into this world. Obviously this kind of family, we so desperately want requires us to do just this -- and that's what we have been doing for the past week. So much training and so much education, my brain is full and my heart is ever more eager to find and bring our new little one home. On a side note -- just imagine if every parent to be were required to fully educate themselves before the birth of a biological child -- gosh, this would would be a different place.

Last week we attended a traumatic and acquired brain injury conference in Philadelphia. Besides the fact that is was sponsored by a lawyer wanting to help families pursue legal action, and this obviously does not apply to us -- there were still some really good presentations such as a look at neuropsychological testing and an introduction to ABM therapy. We were very intrigued by the ABM, so if anyone has a story to share please do so in the comment section.

Later that week Adam I were re certified in infant and adult CPR and then the following day we attended an all day conference on the effects of violence and trauma on the developing brain and then attend the break out session on fetal alcohol syndrome where a birth mother to three alcohol exposed children spoke. Wow, talk about God's amazing grace -- it was very powerful.

My brain hurts just thinking about all the gosh darn learning.

But it's all interesting and of course it's all more than worth it. I would sit in a class for years if it meant we could bring our child home to join our family. The search continues on for our little boy or girl. We have had a few potential matches but nothing so far has resulted in an interview. We have been a little late on the children that we were interested in. We are looking at a little boy in New Jersey but we haven't heard if they are wanting to bring us in for an interview.

It sounds so Cliche to say we are just trusting God to bring our little one home -- but it's totally true. Adoption is nuts. Adopting from the US social services system is a very difficult process. If someone tries to do it without the peace that comes from letting go of ones dreams and allowing God to take over and take the lead, it can be a long journey filled with lots anxiety and stress. We just can't do it that way. We are trusting that Owens number six is already being prepared to join our family and we in the same way are being prepared to bring him or her home. No need to stress, nothing we do will make it happen faster.

Easier said than done -- but we are trying.

For now we just dream, hope and pray. It's crazy how a mother can love a child so deeply, even before the child knows he or she is loved by her.

{New AAC and Other Things}

2011-10-04T13:34:00.000-07:00

Life has been moving at full speed in the Owens house. So many new things to report, so little time to sit down and blog them all out. Plus, I always need a photo to inspire me, and my ability to get behind any camera other than my phone often proves difficult. But today I made it happen.

Communication and mobility are the biggest and most difficult goals we have for Angela. The physical is coming along nicely. She is so motivated that I can totally see her finding mobility soon, whether that means scooting on her belly or walking in a gait trainer -- it's gonna happen, and I have a feeling it will happen very soon.

As for communication, this is a major challenge. Angela is a very smart little girl, but she has a lot going against her. The CP and her lack of both fine and gross motor skills makes it very difficult for her to aim and hit buttons -- and add in the fact that she is legally blind and it can prove to be very frustrating for both Angela and us are her parents. Angela has CVI and it is ever changing, as is typical of most kiddos with this diagnosis. Some days it seems like she can see everything and other days not so much. She uses sound as her eyes -- when she is very familiar with a sound she can see it -- her brain can better comprehend the images she is seeing. This is great in social settings, as the more she hears and recognizes a voice or sound the better she can interact visually with it. But when trying to find a good communication device for her this doesn't help much. Her brain is healing and we are praying that as she continues to develop her ability to navigate a six inch screen will also improve.

For now the iPad has been working out great, but it's still not perfect. We know of the Proloquo2go program many families use but we feel that for Angela this is just way to advanced of a program. Last month a new app was created called My First AAC. This app was specifically designed for toddlers and preschoolers. It's a great app -- but it's very simple. Not a lot of room for customization, but it works for now. Although Angela is not really purposefully hitting the iPad in the proper spot to give an appropriate response or comment, we have set up the program so that when she is in social situations all the responses programed onto the given page apply to her peers and others around her. She can say things like, hello, nice to meet you, lets play and this is my talker.

Although she is not able to aim and talk -- she still loves to be able to have words and fully recognizes the meaning of what she is saying. When she hears something like i love you, she will look up and wait for a response from us. Giving her words is huge!

In other news Angela has been attending a preschool class one day a week at our local YMCA and is totally loving it. I stay with her in the class but only play a small role. She enjoys coloring with peers, having circle time, singing songs and doing a craft. Socially she is really holding her own. She gets very tired in the short hour long class but I expect this to improve as her body gets stronger and she is better able to cognitively take in all the stimulation.

This girl is amazing. I fully know outward appearance is so insignificant, but its in her physical appearance that I can see the healing of her mind and spirit. They way she looks at us -- heck, the way she looks at the camera! Her world is making sense to her and she is no longer going inward to feel safe and secure but is daily learning to take risks and spend time in the present more and more -- and actually enjoy it!

{Play Time and Other Progress}

2011-09-26T13:08:00.000-07:00

I just wanted to take a second and thank all my blog readers for your amazing support and excitement over our decision to adopt and welcome another amazing child into our home and as a part of our family. We are so excited and eagerly await finding him or her. For now, we simply trust God -- easier said than done, but we really are sitting back and enjoying the ride and trusting in His perfect timing.

Things are going so amazing with Angela right now. After deciding to steer away from Angela's IEP and create our own plan for her I have felt this huge weight lifted off my shoulders. It was just not right and the way we feel now as a family confirms that we were not ready to start the educational services just yet. Angela will begin outpatient therapy at the Children's Hospital of Philadelphia on a weekly basis, which frees up so much of her/our time for doing things like we did today and continuing to make amazing progress.

Today Angela had her first preschool class at the YMCA. The class was called Alphabet Soup and is basically a short hour long preschool setting. The class was not a special needs type class, which we were really excited about. We began with coloring, moved on to the welcome, story time, a little group activity and then we finished up with a craft. Obviously I needed to stay with Angela but I provided her with little support and she really held her own socially.

I was really so impressed. Because Angela has had limited exposure to social situations in her first two years and also due to her visual impairments she has really struggled in group settings. Due to her vision impairment, when there is lots of noise that she can't visually understand, she begins to withdraw and reverts to some old inappropriate self soothing behaviours. Today I didn't see any of these behaviors but rather she was very vocal. At one point in the class they were passing around a bag that each child could pull an item out that began with the letter of the day, which was "D". After the first child got a turn Angela began to vocalize, signally she wanted a turn! I reminded her she needed to wait and was very happy when it was her turn to pull something out of the bag.

I already have plans for next class to better adapt things so Angela can participate even more. It is very difficult for her to hold crayons, so I plan on getting those cool Tadoodels so she is better able to hold them and create her very own works of art. Also, tapping down the paper is essential -- otherwise she just grabs the paper and starts waving it in the air! The Childrite seat worked out beautifully during circle time and allowed her to participate without having to need mommies help.

Physically Angela continues to make progress, but it is her social progress that blows me away. This weekend we attended my cousins wedding and despite the loud crazy reception setting she thrived! She loved the music and lights and instead of getting overstimulated she danced her heart out on the dance floor. She is continuing to nod her head yes and no and is really letting her wants and needs known -- very well.

Can't wait to see what these next weeks bring as we go back to class and try to add more social activities into her world!

{Expecting Owens Number Six}

2011-09-20T06:45:00.000-07:00

I read a quote on twitter about six months ago that changed my thinking forever and brought a new understanding and confirmation to the life Adam and I have dedicated ourselves to live. The post said this: "Every family has a purpose. What's yours?". It literally took my breath away and everyday since then it has come up in my mind and heart several times a day.

Purpose is a powerful word. It implies that something was created for a specific use -- it was intricately designed to perform a task and when used in the proper way the end result is simply amazing. Its easy to look at an object and fully understand it's purpose and to not question it -- I use a spoon to eat soup. If I were to try to use a fork it simply would not work.

When a family finds their purpose it's nothing short of a beautiful display of God's perfect design. Our family is so excited to begin the process of finding Owens number six and further embracing our purpose as a family -- taking children who are deemed unwanted and showing them just how desperately wanted they truly are -- how they have a perfect place in this family and embracing their abilities and giving them a life filled with hope and joy.

We fully expect people to not understand why we do the things we do -- and that's ok because this life may not be the purpose your family has. But for us, this works and it works very well. Adam and I are excited as we to prepare both Madison and Angela for the arrival of their sibling. Madison is very excited and Angela will be thrilled to have a playmate at home while her superhero is in school.

With the addition of another child comes change. It will change our parenting strategy in many ways. We have already begun to think of ways to make sure Madison maintains her time with Mommie and Daddy outside then world of special needs. I've been brainstorming weekly Mommie and Daddy dates and also maybe a Mommie and me journal.

We fully trust Gods perfect plan. Our little boy or girl is already found, we just need to wait and trust and be willing to step out of the boat and into the water.

After all that's where the excitement is!

{Doing What is Best}

2011-09-19T12:59:00.000-07:00

I've shared on here before about how Angela turned three and she aged out of her current Early Intervention program that was providing her with her therapeutic services like occupational therapy, physical therapy and speech. Angela has now entered the educational system -- which right away bothers me, as my little girl is three years old. But that's just my opinion and a while other blog post.

Anyway, we have been introduced into the world of IEP and legal mumbo jumbo. We had petitioned to keep Angela at home, since we are still trying to create a stable environment for her and better give her the feeling of permanency, not to mention she is rockin in her development and we see no need to change that! Angela was evaluated by our local intermediate unit and was found to need a certain level of services -- which I understand since she is indeed disabled. I totally get her need for services. What I do not get is that I have no say in how much services we as a family are willing to accept. I was able to talk them down initially but they will not go any further.

If I may boast a little bit. We do amazing things with Angela. It's just our talent if you will. Some people are artists, some good with numbers -- we rock out providing care for kids who need a bit extra. We are creative and also have so many resources at the tip of our fingers if we need ideas and strategies. I will be the first to admit that I need help with teaching Angela to walk and stand. We are doing pretty good, but I don't fully understand how the body works and how high tone plays a role in taking steps and other random things like that. So -- I really wanted PT for Angela through the IU but felt that all the rest was a waste of the Therapists, Angela's and our families time, not to mention it takes her away from the biggest opportunity to develop -- living life!

Well, educational based services do not work like that. If her IEP says she needs "x" number of hours per week of therapy she has to receive that -- no matter what we want. We can't just pick PT and not take the entire package. Well, this package will not work for us. I have nothing against services, but for Angela, at this time and in this family it's not gonna work. However since we still want and need PT we are going to get her private PT most likely though CHOP.

Now with all this said I am fully aware that I can fight for what I feel is right. But to me it's totally not worth it. As a special needs momma, I will have my fair share of battles in the future. I will pick and choose which ones are really important. This one is not. I need these people to like me cause in a year when Angela is ready for school I'm gonna ask for a lot. A Lot. I need them to be on my side.

Angela continues to make progress in all areas. She is standing and taking occasional steps with assistance, she is playing with lots of toys and has moved beyond the need for "sound" toys, but now is enjoying playing with blocks and other small toys. She is putting objects "in" and "out" of a container and she is utilizing her ability to nod her head "yes" and "no" in very age appropriate ways.

Love this girl to bits. She is amazing -- so grateful to provide her with everything she needs -- and rest assure she will get everything she needs. Oh, and see that cute headband? It's DNA! She is supporting her big brother as this week is Mito Awareness week. Go learn more. Go buy a headband.

{Extraordinary Moments}

2011-09-08T05:39:00.000-07:00

As most of you have seen, if you have been watching our story for this past year, Angela is growing and developing in amazing ways. It seriously blows my mind to look at photos from last November when we first met her and just ten months later, she looks like a totally different kid -- there is life in her eyes that before was rather difficult to find.

Since Madison is now in school and can no longer be Angela's buddy in the child care at the gym, Angela is now my official running partner. It's no easy task for either one of us. Angela gets bored sitting in her chair as I run around the track, and well, I get tired pushing her 150 plus pound wheelchair around the tight turns on the 1/13th mile indoor track. As soon as I get going it's time to turn that beast around another corner. Not much fun -- but it's what we need to do for now, until Angela is ready to go into the child care by herself.

Anyway, since Angela has been getting so bored, the other day I decided that I would run a mile then let her get out and "walk" as far as she would go, then put her back in and we would run another mile or two together. When I say walk I don't mean she just gets up and moves her legs like you and I do -- but it's still an extraordinary moment. Something clicked in Angela's head these past few months -- the I can stand on my own two feet switch was turned on, and it is amazing to see. I can stand behind her and give her a little bit of support under her arms, or she will grasp a hold of my fingers with her arms extended and stand -- all my herself. Huge stuff.

Well I figured if she is now standing, why not start walking. So I have been holding her arms from behind and prompting her feet with a little tap from my shoes and they move forward. We repeat this over and over and she will even pick her own foot up to step every once in awhile. The most amazing thing is -- the other day she walked half the track. Holy freakin' cow. This is totally an extraordinary moment.

I am so proud of her. There are some days, which is pretty common in the special needs world, that I look and question -- are you really in there? Then days like this reassure me -- of course she is in there! Angela is such a smart and driven little girl. Make me so excited to dream for her.

I said the other day -- one day she will walk. Someone corrected me -- one day she will run.

Yes. Totally.

{Death}

2011-09-06T06:43:00.000-07:00

It has almost been two years since I last held my baby boy. I remember those last hours before he took his last breath. I remember panicking trying to make as many memories possible in the short time before he would die. I remember running my fingers through his hair so vigorously, almost pulling it just trying to feel so deeply what his hair felt like. I remember holding him and putting my nose right up against his skin panicking that I may one day forget his scent.

Today as I was working on this blog trying to write Gavin's story, it just hit me. The deepest grief, as if I were sitting in room nine at the end of the hall all over again. But this time I can most definitely say that I have not forgotten. My love for Gavin is still so strong and my pain in still just as raw. And that's ok. In these tears that hurt so bad I feel -- I feel, something I was worried would one day stop.

Death is crazy.

Once I became a mommie I had one job -- to make everything better. When my babies cry I hold and comfort and meet their needs. This is the most difficult part of losing a child. Nothing -- nothing I do can change the fact that he is forever gone.

And this is where it gets amazing.

In the midsts of my pain there is still Hope.

For me to ignore that fact would be forgetting everything I learned through the life and death of my sweet boy. It's in my pain that beautiful healing can come, it's moments like this today where I'm dressed and ready to go to the gym and not expecting to grieve that God can come and simply love me -- love my ugly grief and help me put back together the pieces until I need breaking again.

{Childrite Seat}

2011-09-02T09:42:00.000-07:00

It's the little things that in the world of special needs and disabilities are so stinkin' huge. For example, this month Angela started standing up with a little support under her arms or by holding on to our fingers. For most kids at just a few months old the stand up in the lap game starts -- but for kids like Angela, many never are able to stand. So needless to say this is huge stuff. Standing leads to taking steps and taking steps leads to walking. Very exciting.

This week we also purchased this new chair seen in these photos. Again, for most parents a chair is a chair -- it makes life easier but it's not really life altering. This chair for Angela is a gift from God. There are no straps and metal bars, yet it supports her so well.

Usually anything we put her in requires the adjustment of at least on thing like a seatbelt or clicking tight her lateral supports. This chair allows us a spot to stick her where she is not laying on the floor and is in a more age appropriate position to do things like play and socialize. So huge!

These pictures make me smile from ear to ear. This little girl is so precious. Her spirit is amazing -- she is so spunky but at the same time a little love bug. She is growing and developing in way I'm not even sure I thought were possible at first. So thankful that God gave us this beautiful little girl -- to be apart of her life to both push and love so deeply!

{First Grade Eve}

2011-08-30T17:37:00.000-07:00

Tonight Madison and I went out and had some girl time. We did a little first grade eve photo shoot in our old stomping grounds, which I miss so much -- but really only because it's a great place to take photos! Of course I once again look at these pictures and my jaw drops to the floor in disbelief that Adam and I created this beautiful little girl.

After our little photo shoot we went to the track and we ran a mile. Madison has been wanting to run with me lately and to be honest she runs at about my pace therefore making the perfect running partner. That would be so awesome if she could get past two miles and we could do a race together. Hmm -- I see it in our near future!

Our little soon to be first grader is having trouble going to sleep. Gosh, I remember those days. The horrific butterflies that would party in my belly all night, not letting me fall asleep. Tonight we thanked God for giving us an amazing summer and also thanked him for the exciting year ahead!

Enjoy the photos...

{Letting Her Go}

2011-08-29T08:02:00.000-07:00

School starts in just a few days, so here comes my post written out of panic -- out of my mommie fears of letting her go -- letting her go to first grade. Public school works for our family. I have nothing against homeschooling kids and even feel that in many families it works out great, but for our family -- our personalities and for our purpose and mission as a family, public school fits in great. With that said I believe strongly that we as parents are responsible for the education of our children. In my mind the important education is not numbers and words but rather ethics, spiritual truth and self-worth and esteem -- all of which comes from this house, equipping our little girl to make the difficult choices she will one day be faced with, within the public school system.

Anyway, back to my fears. She is my baby. In many ways when I look at her and she's telling me about how she needs an upgrade for her broken hand-me-down no service iPhone I see this twenty year old trapped in a six year old body. Then I really look harder and I still see my baby -- you know, the one that I held for the first time and made me a mommie for the first time. Ugh.

Letting go has always been one of my most difficult things to do. When you add in the fact that this is about my little girls life it makes it even harder. I worry about if kids will like her. I worry that she will stutter and people will not understand her. I worry that she will start telling the story of her life and people will not fully understand the awesomeness of her story. I worry that she will eat a peanut and go into anaphalaxis.

Then I take a deep breath.

God has placed his hand on Madison's life in such a way that even is to deep for me as her mother to understand. He has intricately woven the details of her life to prepare her for such a time as this -- first grade, this is part of her story -- the good the bad and the amazing. I could shelter Madison until the day she dies but in reality I would be keeping God from writing the amazing chapters of her life.

Wednesday I'm letting her go. I'm letting her go to test out her own waters. I'm letting her go to use all the skills and gifts that God has used Adam and I to instill within her. And yes, I'm letting her go to most likely come home in tears one day. But with tears comes healing and understanding and the most awesome chance for me to be her mommie and make it all better.

Happy first grade to my amazing little girl.

{Jumping Over Hurdles}

2011-08-23T07:27:00.000-07:00

Angela's belly has been such a mystery to us lately. When she was first placed with us last year she was having tons of reflux and vomiting, but after taking her to the GI specialist we figured out that she was being fed way to much and too fast through her g-tube. Once we cut back her tube feeds she was doing better, still the occasional throw up but it was mainly just a normal reflux issue. She was placed on various meds to help, which from the results of her biopsy, are working great as there was no sign of damage to her esophagus.

Anyway, after a few months with us Angela learned to eat by mouth. She did amazing -- progressing faster than anyone ever thought she would. But with progression of oral feeding came lots of vomit. Lots and lots of vomit. It got so bad at one point that she no longer wanted to eat by mouth and every meal was a struggle. So we cut back her oral feeding and gave her a break. Even on the g-tube feeds and minimal oral feeding she still was throwing up, just not as bad. We finally figured out a good rate and amount to oral feed where we could eliminate the vomit, but sadly this meant she started to lose weight and was not growing.

So we decided to try to GJ conversion and start feeding down into the jejunum and leave the belly empty for oral feeding. Really this isn't solving the main issue of vomiting, because it's a motility issue of her belly. You put food in and since it doesn't go down it just comes back up. She seems to be tolerating the J feeding and at this point we want to just try to get her to pack on some pounds.

This is a tricky situation because truthfully we could just give her continuous J-feeds, she would grow and she would live happily ever after without vomit. But Angela can eat by mouth and enjoys doing so and if she has a chance to have this kind of quality of life then we are going to give her this chance. If she didn't have the motility issue she would probably be able to eliminate all tube feeding. So we need to figure out what the next steps will be. We've been throwing around the idea of the fundo with the docs and other parents. I've learned one thing -- people either love the fundo or hate it. The tricky part is you don't know if it will work for your child unless you try it. Bummer.

With all this said. Angela is happy. As far as the world of medically complex kids go she is so easy! One thing we have learned with Gavin is that most of the things we think are huge problems really are not -- they are just simply part of the story and hurdles to jump over. We continue to celebrate all her progress and hope that along with her new gained strength will come better motility for her little belly!

{Hearing Her Thoughts}

2011-08-17T08:15:00.000-07:00

As parents one of the most fascinating things to watch develop in our children is the ability to tell us what they are thinking. I can't exactly remember when this happened for Madison, but I do remember almost everyday Adam and I being blown away by the things that were coming out of her mouth. We would on an almost daily basis have one of those where is the world did she learn that moments. Well it makes me so excited to say that we are beginning this new and exciting stage with Angela.

It looks different and she is obviously older than your typical kid learning to communicate, but never the less the child that we have believed and trusted was a smart little girl is finally being able to show the world just that. Angela has learned how to nod her head yes and no! I look at Angela and I see a spunky three year old with so much to say and so many opinions to give but I also see a little girl locked inside her own body. Could it be that we are beginning to see the unlocking of her little body and mind -- I totally think so.

Yesterday we were at the nutritionist to discuss her ever present weight issues and her inability to take in enough food to help her grow. Angela was yelling and whining the entire visit. For those parents with kids with spastic CP you are all too familiar with the arch. The arch that holds so much power and tests the strength of even the strongest people -- it was one of those moments. I could tell she was frustrated. She was bored and did not want to be sitting in that office.

I got out her iPad and we began to go through the apps. One after the other. I would select an app that she did not want and she would vigorously shake her head no and scream at me. It then occurred to me what she wanted. My little delicate princess wanted her fart piano. Yes, you heard me correctly. The fart piano is a big deal in our house -- it provides hours of entertainment. Well, I just did not want to turn on the fart piano for the myself and the nutritionist to talk over. So the fight continued. I would select another app and Angela would tell me no over and over again.

Then I totally gave in.

For the rest of the appointment Angela sat happily making a million different fart sounds.

Sounds like a typical story of the struggle all so common in families with toddlers -- but that very statement makes me the happiest mommie around. Angela totally is a typical toddler, and the fact that we can even have these silly arguments over a fart piano brings a tear to my eye.

Besides telling us no to the iPad apps, she is also telling us she does not want to take a nap, she does not want to eat and she does not want to stretch her muscles.

Are you smiling? Totally frustrating and yet totally amazing.

Love her. Love that God would choose Adam and I to have such an amazing daughter who was destined to be ours and put aside for such a time as this. People wonder why we chose this life again.

This is exactly why we chose this life.

{Vacation: Day Six}

2011-08-05T13:30:00.000-07:00

Today we are packing up and heading home. This vacation was everything I wanted it to be -- so relaxing and amazing memories made. Today has been both amazing and disastrous all wrapped up together. As I mentioned yesterday Madison has been having a difficult time with making good choices and listening to us. Today she made a really bad choice and had something fun taken away that we were going to do tonight. It just really stunk for both of us. I didn't want to punish her and obviously she didn't want to be punished.

After she cooled down a bit she came up to me and said she was sorry and really truly meant it. She told me that she doesn't understand why she does the things she does and we were able to have a little heart to heart talk about how Mommie has the same type of personality and how both us girls are so stubborn and need to have extra self-control when we are challenged. It was a good talk for us to have, one of those parenting moments I'll probably never forget.

Today we hit the beach again and as we normally do, Angela and I walked about four miles up and down the boardwalk. On the way back I looked down at her and was so in love. I stopped right in the middle of the boardwalk turned her head toward me and told her I loved her so much. Adoption is so beautiful -- it is a process that you can't possibly understand until you actually walk it. I thought the moment I met Angela I loved everything about her -- but as time has gone on I find myself falling deeper and deeper in love with this beautiful little girl, which I guess isn't that much different than how it was after the birth of my other two.

Although we are sad to see our time away end, we are also so happy to head home -- find routine and structure and begin our normal once again.

{Vacation: Day Five}

2011-08-04T14:29:00.000-07:00

It's amazing how when you want time to go by fast it seems to crawl and when you want it to slow down it seems to pass by in seconds. That's about how I feel right now. We are winding down this vacation and I'm wanting a bit more time.

With that said, I'm certainly ready to find a schedule again. Madison is six. Do I really need to say anymore? She's just like her mommie in so many ways, it actually sends chills down my spine as I have a slight understanding of her will power and stubbornness. To the outside world she is so good -- and to us as well, but she is very challenging in our eyes. But we love her to bits -- stubbornness and all!

Today Adam and I had some nice alone time and rode our bikes to the other side of the island and enjoyed a nice lunch just the two of us. It was great to spend time with the man I love more than words could say -- after all, without a husband like Adam vacations like this would be a disaster -- a serious overwhelming disaster.

We spent the afternoon on the beach and now we are getting ready to enjoy a nice dinner out with my parents. Adam and I were talking about Gavin this morning. We were saying how what we thought would be difficult proved to be ok. Really -- no matter where we are or what we do, Gavin is not with us. Being at the beach -- a place we have so many memories feels no different than each day when I tuck my children into bed fully aware that he is not there. Being here is no worse -- just different. If anything it gives me time to remember so many happy times where we defied all odds and gave him the best life possible with so many amazing experiences.

Life is so good. These days are just simply a reminder to treasure each and every memory making moment -- no matter how big or small.

{Vacation: Day Four}

2011-08-03T09:23:00.000-07:00

These photos represent so much -- the healing of our family, the continuation of Gavin's legacy and the start of something new, something beautiful! This vacation has been a great time to spend together as a family -- our new different kind of family. Angela is blooming beyond what I could possibly describe here on this blog. She is beginning to just light up. Her little smile and bright eyes show a little girl, who like our family as a whole, is also finding healing, not just physical but the kind of healing that comes from being loved, accepted and wanted ever so deeply.

Today has been nice and quiet. We skipped the beach and choose to just relax here at the beach house. My mom and Madison went to see a little concert on the music pier and tonight just the four of us will find something to do -- still keeping it low key and restful!

Enjoy the photos of my sweet little girl!

{Vacation: Day Three}

2011-08-02T18:11:00.000-07:00

Today vacation exhaustion has set in full force. Today was another nice and quiet day but the heat and time spent playing in the sun has left us all rather sleepy. We had lots of fun on the beach today and Angela actually did a bit better with the heat and was able to have some fun sister time with Madi in the shade under the beach umbrella.

Tonight we hit the boardwalk again, rode some rides and ate some very yummy ice cream. Bed time is extra early and as I type and I can hear it calling my name -- very loudly. So with that said I'll just leave you with these photos of my beautiful family. Love them so much and I'm so happy to be spending this time with them!

{Vacation: Day Two}

2011-08-01T14:54:00.000-07:00

Today has been a very crazy day. Adam and I woke up early this morning and went out for a run and then came back to the beach house and Angela and I left for her neurology appointment, which was a quick flash back to reality -- but never fear we are back in the vacation groove!

Angela's six month neuro appointment was amazing. During our last visit with Dr. Melvin Angela was a different child -- one that I barely remember anymore. I remember she held her hands tight under her chin, constantly flicked her eyes and head in a self stimulating manner and constantly was in a state of failing her arms and legs. But today she is a new little girl. We walked in and Angela sat quietly in her chair and looked all around the office with her arms and legs completely still. She looked at Dr. Melvin and was scared by the stranger and sat tight next to my chest -- totally typical and appropriate. No stimming. No flailing. Wow.

The Neurologist was very impressed with her marked improvement. I had asked that she be taken off her seizure meds but we are going to give her another six months, as he would like to see her seizure free for two years before he would feel comfortable taking her off. He was impressed with her newly learned skill of standing with little assistance. She certainly uses her tone to do this -- but that's just fine with us! At our last appointment we had talked about how her felt that Angela has until age 6 to walk, and if she is not able to walk by then, then it might not happen. Today he felt that her ability to stand at age 3 puts her way ahead of his initial predication. Yippie!

We talked a little about how bad both her EEG and brain MRI look -- then we looked at her, and saw what a miracle she is. We'll follow up in six months. Totally can't wait to walk back into that office with lots of new skills and abilities. Progress is awesome!

Vacation is going great. When we got home today Aunt Jenny had arrived and the fun began! We hung out at the beach and Angela and I walked the boardwalk. Angela surprised all the beach goer's when she puked all over me while we were playing in the ocean -- so needless to say her time in the water was short and sweet.

Tonight, rest and relaxation is on the agenda. So beautiful.

{Vacation: Day One}

2011-07-31T17:53:00.000-07:00

We arrived in Ocean City, New Jersey last night after a painless three hour car ride. Both girls did so good in the car. We decided to transport Angela in a car seat rather than her wheelchair for both her comfort and safety and she was totally thrilled. As I've said before Angela is Madison biggest fan and Angela was totally head over heals that she got to sit so close to her big sister!

Today Adam and I got to have some alone time early this morning and went for a run. Made perfect time, as we got to watch the most beautiful sun rise over the ocean scape -- totally made getting up at five in the morning worth it! After our run Madison and I took a short bike ride and took a little preview of the ocean. Our house is just a block away which is just perfect!

We all had lots of fun on the beach today as well! Both girls are little fishes in the water. We used Angela's neck float, and although we got lots of stares Angela totally loved body surfing on the waves! Angela's temp control has been very wacky so she has not been able to tolerate being in the water very long, but at the same time she isn't doing well in the heat either -- so finding that happy medium is a bit of a challenge, but we're making it work. Of course we have tons of experience with temperature instability from Gavin so it's nothing we can't figure out.

Tonight the plan is to hit the boardwalk and enjoy time as a family riding rides and enjoying the beautiful beach!

{Going On Vacation}

2011-07-31T13:26:00.000-07:00

Life is good, but vacation makes it so much better! The Owens family is taking a much needed vacation to Ocean City New Jersey. We have not had a vacation since before Gavin died and we are so very ready. Ocean City hold so many amazing memories for our little family. We have vacationed there a few times a year for as long as I can remember but after Gavin died I have not been able to emotionally go back -- but this year I'm ready.

I'm ready to make new amazing memories and most of all have some time of relaxation and of course some major tri training on the boardwalk and in the ocean. We will be vacationing with my parents who have always been our biggest supports and we are so lucky to have them as a big part of our lives.

The iMac is coming along on vacation so I can't wait to share our amazing week ahead!

{Gavin's Birthday Give: REcap}

2011-07-30T06:47:00.000-07:00

On Thursday we had the great privilege of delivering the items we collected to celebrate what would have been Gavin's fifth birthday here on Earth. This year Gavin's birthday brought lots of new emotions -- missing him so much and feeling the pain of time gone by. But during this time of mourning there was no better way to heal our hearts that to honor our little boy and give back to the place that helped our family live an amazing 3 1/2 years.

The feeling of going up to the third floor and walking down the hallway still is pretty surreal. I love that place and I loved that time of our life. Despite all the horrible things Gavin and our family endured it still was our life -- and a pretty awesome one filled with so many amazing memories.

Giving back is the best way to heal. The need for infant toys is so great in the hospital and to meet a small portion of that need with the help of everyone who made donations this year was so much fun. I know when I started the collection this year I found myself very guarded that we would not be able to make a significant donation this year, but was then reminded the truth that every little bit helps. I remember countless times inpatient and Gavin was given something from Child Life that made our inpatient stay just a little bit better -- it's so exciting to know that so many other families will have this same positive experience.

Thanks to all who help us keep the memory of our little boy alive. Gavin's body may no longer be with us anymore but it's in times like this where is presence is ever so real -- his legacy is strong and runs boldly though our family -- holding on to hope and finding joy in the most horrific of situations.

{Big Girl Glasses}

2011-07-25T07:12:00.000-07:00

Last week we picked up Angela's very first pair of glasses! It really was an exciting day for all of us. After our visit at the low vision clinic in Philadelphia two months ago we were really excited to better understand Angela's vision and left with the hope that our little girl's vision could heal and re-route just like the rest of her little brain.

When we picked up her glasses I wasn't sure what to expect. The prescription is significant but not overly strong, as her blindness stems from the brain and not her actual eyes. But to our surprise when she put the glasses on her she smiled from ear to ear and started to look -- everywhere! The rest of that day she was just looking -- something we are not exactly used to seeing her do. He eyes often drift or stare into space -- but this time she was really actively looking at us and the house. That night when we took them off she kept rubbing her face as to say, why the heck did you take them off?!

Finding the prefect pair for Angela was no easy task. It was suggested to us that we get the miraflex brand, which are rubber and wrap around the head. They are ok -- but I didn't like them and wanted something more stylish for Angela. Right now she is not very mobile so we don't need to really worry about her breaking them. We tried on lots of other infant glasses but we didn't like any of them -- they all looked way to handicap for our vibrant little Angela. The other issue is that due to Angela's microcephaly she has a very small head. Her head circumference is only 15 inches, which added a little more challenge.

We finally found the perfect pair. They were able to give a nice severe bend to the arms so they kinda wrap around her ear and we also found a great strap. So far they are working out wonderfully. She keeps them on and seems to be bothered when we take them off. I'm sure she is highly motivated by her new world.

Angela is amazing. She is growing and developing more that anyone ever told her she would. I just can't wait to see where she is this time next year.

Look out world -- here she comes!

{A little Bit of Crazy}

2011-07-20T07:45:00.000-07:00

I love craziness. It must just be part of my genetic make up -- I do so well when a bit of crazy is added into my life. It's just how I work. I'm happier and way more content when a challenge is placed on the table. My current crazy is coming up on August 28th in Asbury Park, New Jersey -- the SheROX triathlon. I competed last year but had a friend do the swim for me -- this year it's all me and I'm very excited!

I'm way behind on my training so I've been needing to get this body into shape fast -- real fast. Last year's triathlon was a huge step in my healing process after Gavin's death. Everyday when I would train I would have time to just simply reflect and remember by little boy and also work through the intense pain and grief that came along with his death.

This year I feel like my focus is a little different. I of course spend lots of my training time thinking about Gavin and how his life has in many ways helped to define who I am, but I've also been thinking a lot about the women I need to become to best honor not only God but also Adam, Madison and Angela. I'm excited to not only gain the physical strength but also have a time of personal and spiritual refreshing.

Along with the Tri training comes the other normal Owens' Family crazy. Angela has started private swim lessons at the YMCA and so far it's going pretty well. This was a huge challenge for me -- the idea of letting her go and have independence apart from me is difficult. But giving Angela the chance to socialize and develop apart from mommie is a huge part of development and something she deserves. The instructor had no previous experience with a child like Angela, but I taught her a few things and had her utilize Angela's neck float and things are going pretty smooth for both Angela and the instructor -- and mommie!

Madison is six and creates a crazy like no other. As Adam mentioned on his Twitter -- being a parent is so hard. We are trying to create consistency and also a positive summer experience, which is easier said than done. Let's just say we are all super excited for first grade! But you've just got to love her spunk and sassy ways!

{Investing In Their Future}

2011-07-13T08:05:00.000-07:00

Recently I've been thinking a lot about my children's futures. I like to dream about what they one day will become. I often picture Madison as a top surgeon at the local children's hospital -- either that or something crazy like a dancing mime -- these day's it could go either way. I often wonder and imagine what Angela will look like down the road. I can see her walking and talking, sharing her life and story and impacting those around her.

Our Church's Kids Ministry will soon begin a new direction, and I think that's what's been making me think so much lately. Our church, like many others will begin to encourage parents to get involved in their children's spiritual development -- making Sunday morning no longer just a drop your kids off and hope they learn something good kinda thing. It will help and guide us parents to really begin to have an active role in our kids spiritual lives.

An active role in my children's spiritual development.

I guess I've begun to see in many ways where I lack in this area. If I were to put as much effort in to Madison's spiritual relationship as I do her health and mental development -- can you even imagine how that would not only impact her but also impact the world around her? I often say I want Madison to know just how much God loves her -- how beautiful she is -- how she has such an important purpose here on earth -- but do I really ever make an effort to show her those very things?

It's a lot to think about -- I know it's not an easy thing. I would be the first to think, oh goodness, just one more thing. But then I start to think of the benefits -- the idea that my girls will walk though their teen years with the boldness, power and peace that only can come from the understanding of who God is and how much He loves them churns up this overwhelming excitement.

I consider it my honor and privilege to invest my time and energy in to the lives of my amazing children!

**Since I work at my church I just want to add in the disclaimer that this is just my personal opinion and not from a work standpoint. Thanks!

{Big Girl Bikes}

2011-07-08T06:59:00.000-07:00

Last week both girls got brand new bikes! Madison has never learned how to ride a bike. Before Gavin died we bought her a bike that she was never able to actually ride -- it was a beautiful bike but it was way too big. Adam and I were obviously a bit over zealous when we purchased Madi's first bike, as we bought our 4 year old a twenty inch bike. Silly us.

Since Angela was getting a new bike though the local Ambucs we knew it was only fair that we also celebrate Madison and also get her a bike that she could actually ride! She found the perfect hot pink and white Barbie bike and she is doing great on it!

Angela's bike has changed her world. Before Gavin died he was also given a bike through the Ambucs and gave him the opportunity to do what medical science said he could not -- ride a bike! We are so grateful that the Ambucs helped give our little boy this experience before his death and we are just as grateful that Angela will now be able to do what other little girls are doing -- riding bike and having fun!

Angela's bike give her a motor experience like no other. Since she is not mobile she never gets to experience reciprocal motion of her legs and arms. The bike not only give her this motion but also gives her the thrills she seeks and loves -- not to mention puts a huge smile on her face!

The braces on her arms help keep her little spastic arms on the hand petals. It looks a bit harsh but Angela doesn't mind it at all and actually really enjoys the motion the grips allows her to have. The bike is equipped with a push bar so that Adam or I can help her ride by walking and pushing from behind, but with lots of effort Angela is able to get the petals around -- that's big stuff!

Thanks so much to the Spring Valley YMCA and the local Ambucs for once again blessing our family with added quality of life! Thanks for helping to remind the world that despite disability ever person should be able to maintain quality of life and ride a bike!

{Amazing Week}

2011-07-05T08:01:00.000-07:00

This past week has gone by so quickly. Our week was jammed packed with so many fun and exciting things -- I've got lots to talk about! Our week started with kids Camp. In case you do not know, I am the assistant to the kid's Pastor at Morning Star Fellowship and my family along with about a hundred other kids and leaders set off to camp on Tuesday for lots of fun adventures and also a time to grow closer to God!

We all had a great time at camp, though it was a bit difficult for Angela, though she made it through! Feeding for Angela has still been a huge challenge. Thanks for all you tips and advice. Angela is a tough one since she had multiple disabilities going against her. We decided to back off a bit and let her take a much needed break from full oral feedings. Angela 1P36 deletion has caused her to have several defects in her mouth. She does not have a frenulum, which is that little piece of tissue that attaches your tongue to the bottom of your mouth. This causes her tongue to be completely free, which adds difficulty to the feeding process. She also has a deformed lower jaw that forms a U-shape when looking at her straight on as well as missing teeth. This mean that when she closes her mouth there is a nice size hole in the front of her mouth where her teeth should meet. This allows way to much room for not only her tongue to slip out but also food. I feel like we really need to address these issues before we continue to push her.

Despite feeding issues she is moving forward and enjoying the summer fun with her big sister Madison! Both girls got new bikes last week and we took our very first family bike ride, which was so special on so many levels! Angela's bike was custom made just for her through the local Ambucs -- I'll be doing a separate post on her new bike with lots of photos!

To end our wonderful week we took a trip to Dutch Wonderland with my parents. I was feeling a bit anxious about going since I have so many memories of taking Gavin and Madison there, but once we got there it was so much fun and it was great to make new memories. Before we left I made Angela a special support harness so that she would be able to ride the ride, since she is a thrill seeker and I knew she would totally love it!

The harness was made from thick fabric along with Velcro. The harness wrapped around her torso and there was also a piece of fabric that ran between her leg. Attached to the torso where two long pieces of fabric that went in front of her shoulders and could be looped around the back of the ride or to Madison to give her extra support and to keep her from falling side to side or forward. It worked great and she had a blast. She tired out pretty quickly in the sun so she only made it onto a few rides -- but totally loved them all! The park was very accessible and we were able to get a pass so we could enter through the exit and not have to worry about getting her chair through the lines. The staff was super nice and assured us that they would stop the rides if Angela needed to get off -- which never happened! My only complaint was that the monorail was not accessible and we were unable to go on it. There were two flights of steps leading up to it and we did want to leave Angela's wheelchair unattended at the bottom. But this was such a tiny negative amongst so many positives!

We are all so ready for a nice quiet week.

{Giving Her Back Some Control}

2011-06-23T09:16:00.000-07:00

Angela is full of personality. She loves to smile and laugh and also has a temper and a will stronger than I've ever seen before. This little temper of hers has been showing itself way to much lately and has been rather difficult to deal with.

Most of the time she is the happy little girl you see in these photos, but right around feeding time her little temper starts to flare. I have been doing so much thinking about this lately. Feeding and Angela's learning to eat has been very interesting to watch. She has learned so quickly, what takes some kids years to learn. She went from taking nothing by mouth to taking everything by mouth in less than two months. She does enjoy eating when she wants to. She is able to express her preferences and we try to give her yummy food that gives her variety as well as lots of texture which she prefers over boring purees.

Feeding used to be a lot easier with her but lately it has become a battle -- one giant battle for control. I don't blame her one bit. Most of her day is totally dictated by us -- we choose what she does, when she does it and what toys she does it with. Her muscles do not work but her little mind is full of preferences and ideas of her own. I've been trying to figure out a way to give her back the control she wants -- and the control she deserves.

So we decide to re-do our feeding approach and methods. This has not been easy. The way we were feeding her was effective and fast with little to no mess, but it also took all control away from Angela. When she was first learning to eat this method worked and was best for Angela, but she is changing and so must our methods. We are making sure that Angela knows it is time to eat with a verbal prompt and a little food on the lips. Instead of holding her her head back and pushing the food in we are trying to ask her to open and receive the food. This doesn't always happen but we sure are trying! We previously would put the food on the back of her tough, since she doesn't really have a good swallow -- now we are trying to clear the food with her top teeth and allow her to move the food back and swallow.

If she's in the right mood this seems to work, but it has not been easy. Feeding is a very difficult thing -- it's something she needs to do yet we also want it to be a fun happy experience.

Really excited and eager to see the oh this is so yummy switch turn on in her head -- I know it will happen!

{Learning to Play}

2011-06-22T14:48:00.001-07:00

Madison has never really had the opportunity to really play with a sibling. When Gavin was alive he was kinda off limits as far as holding and rough housing -- things normal siblings do all the time. Although Madison and Gavin developed their own special bond in their own special way they never really have much physical play.

When Adam and I decided to adopt one of the many things that made me so excited was the idea that Madison would have a sibling again. Its been crazy to see just how perfect Angela is for our family -- she fits right in and her relationship with Madison is no different -- it just works.

The formation of their relationship has been amazing to watch. I remember the first time Madison met Angela, it was as if they knew each other forever -- nothing about Angela scared Madison and made her uncomfortable. Their relationship has recently gone to an even deeper level -- they are learning to play.

Often times, people who look at Angela and do not know her don't understand that Angela is a smart little girl who in many ways thinks just like a typical three year old. She wants to move -- act crazy, and never sit still. Madison has this ability to look at Angela and see just that. Madison loves to carry Angela around the house, wrestle on the floor and giggle -- just like sisters are meant to do! It is so beautiful to watch.

Life in the Owens' house is crazy as ever. These past few weeks have brought on lots of doctor appointment, including cardiology, seating clinic and also a trip to the PCP to figure out some of Angela GI issues. Angela has been having lots of vomiting with feeding and we are trying to figure out just what to do. She is now taking all food and liquid by mouth but her stomach is unable to hold an appropriate volume and this coupled with her poor gastric emptying causes lots of vomit. We placed her on some motility meds to give it a try and we are saying a prayer that this is the answer. Angela's GI doc left duPont so getting in to see a new specialist is going to take some time.

We ordered Angela a KidWalk and are so excited to get it in and have her start using it! She currently has a pony but some of the adjustments are broken and we just can't get it set right for her to use properly. The KidWalk will take a few months to arrive -- hopefully before the cold weather get here again! We also ordered her a riffton seat to use for her living room chair and also with feeding -- this is the only fully wipeable chair we have found. Just can't figure out why all these adaptive chairs are made with cloth -- so gross with feeding.

Enjoy the photos -- love these girls so much!

{Chronically Cool Families at the Phillies}

2011-06-18T12:24:00.000-07:00

Many people know that Adam and I along with our good friend and social worker founded Chronically Cool families, a parent to parent support group for families dealing with chronic illness and disability. Tickets were donated by Roy Halladay and the Phillies to our group to not only watch the game, but also spend time down on the field and also seats in Halladay's private suite, which was very comfy and filled with lots of food and special gifts for the kids! We were made to feel so special and this day will never be forgotten!

This was an amazing time for us. Not only because it was just an overall great experience but it was so amazing to watch all these families having fun -- putting aside what life deals out on a daily basis an simply having fun!

Our friend came up to me at the game and asked how we were doing and such, as we were spending the week remembering our little boy. She reminded me that all this was because of his life. It kinda took my breath away. I know Gavin's life has been greatly used but sometimes I get so focused on details like CCF not having a website yet, and I forget to see just how amazing it is already and how many families are being impacted!

Silly me.

We are so grateful to the wonderful opportunity given to us by the Phillies and Roy Halladay -- and congrats on the Win!

{Keeping His Memory Alive}

2011-06-15T05:15:00.000-07:00

I know many people look at our life and wonder how and why we do the things we do, in regards to Gavin's death. Somehow in our culture the idea of death and the concept of celebrating those who have died is so taboo. Throw in the the idea of the death being that of a child's and it's deemed unmentionable. Our family is determined not to let what looks culturally normal to define the our family. Gavin will always be a member of our family and he will always be celebrated -- never pushed under the rug.

Another reason we choose to keep Gavin memories alive in very real and physical way is for Madison. Although at times I think little ones understand way better the idea of death and are able to simply accept it way more than adults -- truth is children need tangible ways to mourn and remember.

Yesterday we did just that.

I had been wondering lately just how Madison is doing. Adam and I have both realized that she is starting to forget the details of Gavin life. Even though this is a sad reality for me as a mother to watch -- it simply means she is growing up and healing. But, I've sensed that along with her memories fading comes in a bit of confusion and frustration for her six year old mind. I can't imagine what it's like for her little heart and mind -- knowing she is sad yet starting to forget the details that made her so sad. We as her parent walk a thin line -- giving her words to her feelings yet not pushing our feelings onto her.

At one point in the morning was her breaking point. I knew she was really struggling with her feelings as she was acting out and really just out of control. Then I gave her some words like, I feel sad and I miss Gavin -- and then the tears and healing came.

Yesterday was an amazing day. Spending some time as a family at Gavin's grave -- all being together and just simply being. Not a lot of words, yet the unspoken spoke so loudly. Thank you all for your unending support. Thanks for loving our children and walking this journey with us.

{Turning Five in Heaven}

2011-06-14T03:46:00.000-07:00

I often wonder what it will be like on the day I get to see my little boy again. I'm really hoping that he will be just like he was when said goodbye -- perfectly three and a half. Madison and I have had this conversation so many times I've lost count.

This birthday has been extra hard. Five years old -- it's so hard for me to swallow. I think this year has been more difficult than last because this year is filled with lots of would haves. Gavin would have been starting kindergarten. He would have been growing tall and handsome just like his daddy. He would have been talking and telling us all of his interesting little boy thoughts. He would have...

Today as the girls and I were driving past Gavin's grave as we do almost everyday we were listen to music in the car. We were listening to Kim Walker sing, Show Me Your Glory. The song talks about wanting to see God's glory in the most powerful way, just like Moses and Jesus did. I'm not afraid, I'm not afraid, the song plays.

The months after Gavin died I would listen to this song over and over. It was in my deepest season of mourning that I desperately want to see God's glory in Gavin death. My heart knew it could be seen but my mind was screaming out for answers and reasons.

This year as I listen to this song I felt different. I've begun to see a glimpse of that Glory -- the very essence of God displayed thought our little boys life and death. I feel like that Glory surpasses all of the would haves. That Glory can bring comfort to my hurting mommie heart in a way that nothing else can.

Happy fifth birthday in heaven my sweet little boy.

If you would like to honor Gavin and give back in his memory to the hospital he lived most of his three and a half years -- this is how you can do just that! We will be accepting donation all throughout the months of June, helping us to remember, honor and celebrate the legacy of hope he left behind.

{My Little Water Bug}

2011-06-13T07:42:00.000-07:00

I have always been a huge support of letting kids with special needs have every opportunity to experience water possible. When Gavin was alive this was one of my most proud accomplishments. With all his IV's and tubes coming out of every part of his body we figured out a way to give him a safe water experience -- and the benefits were so huge for him. We have taken the same approach with Angela and so far she is pretty darn excited we have!

I have used several different kinds of head supports with Angela. We first tried a neck collar, but found that she was just too small for it -- even the smallest version was too thick for her little neck and we also found that it too often would push her bottom half to float and did not give her the ability to stay vertical. We also tried a small inflatable neck support but found that this was too small and would not support her enthusiastic body.

I've had lots of friends utilize the Water Way Babies program and I finally decided to give it a try. Amazing. That's the best way to describe it. The neck float is absolutely perfect for Angela. It keeps her neck well supported, yet keeping it in a natural position. The device allows her body to stay vertical and allows all of her limbs to freely move in the water. We add one pound weights to her legs to help her keep her feet on the bottom of the pool, giving her the input of standing, yet with the support of not only the flotation ring but all the pressure of the water surrounding her body.

We also purchased the in home therapy pool. Angela has been using it everyday and it also is fabulous. Even though Angela is probably on the larger size for it -- because of her lack of tone she is still gaining lots from being in the water. It provides a great environment to help her gait train -- again with the support of both the ring and the buoyancy of the water. My only concern with the pool is that she is so crazy about the water that she just bounces herself against the walls back and forth -- but I guess that's really not that much of a problem!

So excited to see our little girl gain strength from the WaterWay Babies program. Thanks to Nancy for all you help in getting us started!

Claiming Her as Our Own

2011-06-10T06:13:00.000-07:00

Yesterday was the day we had been waiting for since more than one year ago -- yesterday Angela legally became our child and in front of a court of law she was declared Angela Piper Owens. If only my words could describe this day adequately. It was so amazing.

Yesterday as we prepared at home to head to the courthouse I had so many emotions running through my heart and mind. I felt very similar to the moments I delivered Madison and Gavin -- so excited yet filled with so much anxiety and fear as well. The day went so smooth, no glitches or hesitations, the judge was more than willing to declare her our own.

Adoption is amazing. I find it really hard to understand how it can not be fully embraced by the Christian community. I think back to when we were first starting this adoption journey. There were so many questions that people had as to why we would do this again -- was it best for us? -- was it best for Madison? I look at where we are now and I can fully say with out a shadow of doubt that this was probably this biggest gift God could give us for this season of our lives and the best gift we could give Madison.

Adoption is who we are as Christians -- God choose us. And despite our pasts, he chooses to claim us as His own. I don't know how it could get much better.

We have claimed Angela as our own from the day we first saw her photo. Yet over the past six months we have always had the legality of her placement in the back of our minds. Yesterday, as apart of our testimony we were asked by the lawyer -- "Do you understand that by going forth with this adoption you gain all rights and privileges as if she was born unto you?"

And with a huge lump of pride in my throat and overwhelming love in my mommie heart I answered, "Yes I do."

So unforgettable, so beautiful.

{Three Rocks}

2011-06-07T06:00:00.000-07:00

I'm not sure there really could ever be a perfect explanation of what life is like after the death of a child. For the most part, I would not want people to really understand -- as in reality the only way to really fully grasp this world is to live it yourself -- I wish that on no one. However, I often wish people could just understand just a little bit of what our life is like now that Gavin is gone.

Shortly after Gavin's death we enrolled our family at Peter's Place. This is a non-Profit group therapy center to assist children and families in the grieving process. We would go on a biweekly basis and Madison would join about six other kids in her age group who had either lost a sibling or parent. During Madison's group time us parent's would gather and have have our own time of reflection.

This past session was our last time in this group. We just felt like it was time to move to the next step in our healing.

During this last session Madison took part in a beautiful ceremony to celebrate her healing. Madison was given three rocks. Two of the rocks were beautifully smooth -- polished and perfect. The cool smooth stones were soothing to the touch -- they signified our healing. The other rock was rough, as if it had been cracked off with no care of concern. It was ugly. There was no smooth edge to be found and was just plain ugly. This signified the pain and grief that we will always carry -- the death of Gavin.

Now when you first look at these stones the beauty of the smooth rocks is the first thing you see -- they are the majority. But once you take a closer look you see the rough edges of that one lone rock. As our life continues on our pile of smooth rocks will grow -- our healing will become more and more firm. Yet even during the times where we feel that God could not possible heal our hearts any more, there will always be that rough rock.

Many Christians and people of faith would say -- well doesn't God want totally wholeness -- complete happiness and healing? I think somewhere in the history of Christianity/Faith we got it all messed up. Our human idea of wholeness doesn't match that of God's. If we were to take that rough rock out of our pile -- it would be as if we would erase the life and death of our little boy. Even though the pain is so deep -- in our pain and groaning His grace and faithfulness runs even deeper.

If were to walk around with a handful of smooth rocks we would be claiming something we are not. Our rough rock has made us who we are and in our eyes, beauty can be seen even in the rough edges.

Thanks to Peter's Place for helping us in our journey of grief. We will never forget our times of simply being able to be a family in pain -- and during those times, also seeing the possibility of healing.

{Low Vision Assessment}

2011-06-06T12:15:00.000-07:00

Before we welcomed Angela into our home we were told about her many diagnosis -- well, actually we learned about quite a few after placement but that's a whole different post. One of her challenges we did know about was that fact that she was considered cortically blind. When Angela was born she suffered a grade IV brain bleed due to her prematurity and also from her overall fragile state due to sepsis. The hemorrhage was located in the front of her brain directly surrounding her optic nerves. On exam you can see that both her optic nerves are very pale -- meaning that at some point, which we know was the point of brain injury, the optic nerves did not an are not getting the O2 they need. So this makes Angela have visual impairments. There is noting drastically wrong with her actually eyes -- it a brain issue as her brain is unable to comprehend what her eyes are viewing.

With this said -- Angela's eyes are healing. When she first came to us over six months ago I would have said with full confidence that Angela was blind, with the exception of her ability to see bright lights. She did not focus her eyes and only occasionally would appear to be seeing something. She is totally different now. She is using her eyes more and more to look at faces and objects and can even aim and grab objects such as toys at the table on on her toy gym. Stimulation, lots of love and a whole lot of God's provision does amazing things!

Since we knew that she could see we needed to find a way to learn exactly what she could see so that we could better push her to her full potential. We learned about the low vision clinic at the Eye Institute of Philadelphia and immediately knew it was a perfect match for our family. The eye exam is specifically designed for children and adults who are not able to do a traditional eye exam. The exam is very intense and looks both at past history and also took into consideration a lot of what I as her mother thought about her vision. The exam took about two and a half hours, and although it was a long visit Angela did amazing and they kept her engaged the entire exam.

Through the use of specialized tests we were able to figure out what stroke width Angela is able to see -- meaning if she were reading -- what font size she would be able to read. One of the coolest things I got out of this entire exam was that fact that the doctor said to me, "When Angela reads you will need to make sure the print is enlarged to this font size." Did you catch that? She said, when she reads. Amazing. I loved that she saw Angela for the intelligent little girl we know she is. We were also able to determine a little about her field of view. It appeared that she is limited on her left peripheral, but they were not confident to say she has no vision in this area as Angela was pretty tired at that point. They were able to say that her right side is very strong so for education purposes things need to be presented to her right field of view and for therapeutic reasons we should encourage her to look to her left field of view. We will be going back next month to explore her vision even more including looking at color preference and depth perception.

Does your brain hurt yet?

We left with a prescription for glasses since she also has a significant astigmatism and is also mildly near sided. I left with confirmation that Angela sees more than what she often shows the world she can see. I left with excitement -- excitement of possibilities and hope for Angela.

Not that I really needed confirmation that she is fabulous -- but it always helps!

{Angela's Third Birthday}

2011-06-03T06:56:00.000-07:00

I never once imagined it possible to love a child, who was not physically born to me, as deep as I love and care for Angela. I look at this little girl and I have to remind myself that I haven't always been her mommie -- my love for her is that deep, it feels as if her smile has been written on my heart since the day she was born.

Today I woke up and couldn't help but think of Angela's birth mom. At first I felt a bit of anger towards her and disbelief how a mother could leave her child -- but then God really started to show me how in reality, this women gave me the most amazing gift, and for that I will be forever grateful. God works in crazy ways. What we automatically write off as a horrific situation just might be the avenue God chooses to bring the very miracle our heart longs for.

My little miracle is here, and today we are celebrate just how amazing and beautiful she is. We celebrate the hand of God that is obviously on her little spirit, slowly bringing healing to her body and mind. I am both humbled and so totally amazed that God would allow me to be apart of her incredible story.

Happy third birthday Angela. Mommie loves you so much -- I always have and always will. I promise to always be right behind you, pushing you and cheering you on as you journey through life. What once defined you no longer has any power -- you are loved, wanted and treasured.

You are forever my little girl and I will forever be your mommie.

{Gavin's 2nd Annual Birthday Give}

2011-05-31T12:20:00.000-07:00

Most people reading this blog know that we have an amazing son named Gavin who died on November 8th 2009 after a life long battle with Mitochondrial disease. This horrible illness caused his organ systems to slowly shut down over the course of his three and a half years. During his amazing 3 1/2 years, Gavin taught us to never lose hope -- to find joy in the most horrific of situations and peace in the midst of turmoil. As we look back over the three wonderful birthdays our little boy was able to celebrate here on earth, my heart and mind is flooded with amazing memories. This year, despite his death, we once again choose to celebrate his life. In celebration of Gavin's fifth birthday we are once again organizing a Birthday Give -- a way to give back to the hospital that helped give our little boy 3 1/2 amazing years of life.

Our family lived most of Gavin's life inpatient at the A. I duPont Hospital for Children. We could not have asked for a better group of people to become part of our family -- they provided us with the love and support we so desperately needed during our many years of medical crisis, watched along side us Gavin's little body fail. They welcomed us with open arms, and stood by our side as Gavin took his last breaths. We sensed that even though it was our child that was dying -- we were made to feel like they too were saying good bye to one of their own. These memories are priceless.

During our years inpatient at the hospital we saw a great need for infant toys. These are often hard to come by as many families take them home after their stay and donations of infant toys are few. So this year we once again will be collecting new infant toys, such as rattles, teething rings and other small toys to donate to Gavin's Closet located on the 3E inpatient unit -- where Gavin stayed and also to the Child Life department to be spread across the hospital.

Last year Gavin's Birthday Give was a huge success -- and to be perfectly honest with you I have so much fear going into this second time around. I never want the world to forget my little boy and the legacy he left here on earth -- but truth is time is going on and I understand that people are also moving on. Despite my fears I'm pressing forward. Truth is -- no matter how many donations we are able to collect, just one toy will impact the life of another family.

Donations will be accepted all through the month of June. Toys can be mailed to our PO Box, which you can find at the top of this page. Monetary donations will also be accepted. We realize that many people don't like to just give money to any old website or cause -- we get that -- so no pressure. But rest assured we will bring you along for the ride and keep everyone informed about how things are going -- not to mention provide lots of photos when we make the delivery!

Thanks for helping us celebrate our little boy and the impact he had on us all!

{Our Special Gift}

2011-05-26T10:32:00.000-07:00

God really is amazing. I know that statement is used so much in the Christian community I feel like it almost looses its power. I often times look back over my life in just complete awe of the inner workings of what some call fate, or what I have come to know as the intricate orchestration by God of even the tiniest details of my journey. I look back at all the doors that were closed -- by my own choosing or Gods, and am blown away by the gifts that were laying just behind me at the threshold of each door.

Every movement Angela takes is pure willpower -- nothing comes easy. She works very hard for every wave of her hand and swallow of food. Yet despite these challenges she is moving forward. Progress. Progress is an amazing thing. Progress doesn't necessarily mean it gets any easier but progress brings amazing strength to overcome.

Progress was our gift waiting at the threshold of Gavin's death.

It hard to imagine a greater pain than to watch the child who was created in the depths of my body suffer and slowly regress to the point of death. After my baby's four years of struggle both in my womb and out, the ability to be apart of the miracle of progress is nothing more than a divine gift, sculpted by God himself perfectly and beautifully for Adam, Madison and myself.

It makes me stop still in my chaotic life and recognize just how good He really is -- how faithful he is despite what our circumstances are portraying.

We've always said that after Gavin's death we really felt like he was leaving us behind a gift -- the ability to carry on his legacy and live life, true life beyond the scope of suffering.

Little did we know just how amazing that gift really was. It goes beyond a tiny little girl with beautiful curly hair -- it's a gift that speaks of faithfulness, restoration, promises kept and a chance at life once again.

{Special Needs iPad and IEP Update}

2011-05-19T11:25:00.000-07:00

I have had so many people email as ask where I found the wheelchair mount for the iPad, seen here in this previous posts, so I figured I'd just put it in a post and answer everyone at once. We purchased this mount online -- it's call the articulating arm. This really is an amazing little invention and we use it on a daily basis.

It took a little while to get comfortable with finding the perfect angles for Angela, but I've got it down to a science now and I can set the arm and fold it down very quickly.

The site offers an iPad case but you can find one much cheaper at a store like five below or on Amazon.com. A large peice of industrial Velcro attaches to the case and the other side to the arm. We replace the Velcro on a monthly basis to ensure the iPad is very secure.

Angela contintues to amaze us on a daily basis. She is getting so strong and both visually and developmentally she is really taking off. This week we had her very first IEP meeting which went great. The IEP it's self was pretty easy -- Angela was offered more than enough services. We petitioned for in home therapy since we are not ready to send her to school due to our desire to create permency in our home. I was able to talk down her therapy hours as in my opinion, allowing her to live life outside therapy is totally the best kind of therapy.

Anyway, it wasn't exactly the IEP that I felt was so great, it was Angela's presentation during our meeting. Just a month ago when I took her for her evaluation I spent most of the meeting giving her verbal cues to stop many behaviors such as gazing at the lights and wringing and biting her hands. This week I had to correct her maybe only once. She was amazing. I wheeled her into the meeting and she greeted everyone with a smile and hand wave. She played with her iPad and her toys the entire meeting. She was very social, making random eye contact with the therapist throughout the meeting and sending a little wave to them.

It was so amazing to see.

We had to change most of her goals as she has progressed so much since last month. Heck -- last month she was totally tube fed and now she eats everything! Today she also began to drink from a sippie cup -- so far today I've gotten about 4 ounces down -- that is so impressive!

Angela turns three on June 3rd and less than a week later we go to court and finalize in the eyes of the law what we already know in our hearts -- she's ours! I couldn't be happier to be her mommie. I thank God on a daily basis for choosing me for this very cool adventure.

{Camp Erin -- Giving Her Time to Grieve}

2011-05-17T06:31:00.000-07:00

Many people know that we are apart of Peter's Place -- a Center for Grieving Children and Families. Along with providing our family with amazing support over the past 18 months it has also given us access to so many resources for Madison, one of which is Camp Erin. This past weekend Madison attended her very first sleepover camp for three days and spent time simply being a kid, having fun and also some precious time remembering Gavin.

This was such a difficult thing for myself to send her. At first I figured I'd be ok -- after all I'm about as relaxed at they come, but that second night really got me. I knew that on that second night they would hold a luminary ceremony. The ceremony included the kids lighting candles, placing them on the river and watching them float away -- a beautiful display of all the loved ones lost. The idea of my little girl grieving without me hit me hard. I guess camp hit me hard on many different levels. This was the perfect year for Madison to go to camp. It's a fact that she is growing up -- and her loss is growing more distant. We will never let Madi forget Gavin, but we as her parents need to allow her to move on.

As a mother who lost her child, the memories of the very moment Gavin took his last breath will forever be ingrained into my soul -- but Madison is forgetting. She no longer remembers some of the very intense details of Gavin's suffering, and at first that sounds really positive -- and it is. But for me as her mommie I have to daily fight back my desire for her to never forget every last details of his life. Although Madison frequently talks about Gavin and his life on earth, I can't even describe the feeling that comes over me when she shows me a family drawing that does not include Gavin. Ugh -- it hurts so bad.

But it's ok. She is moving on. She is healing.

I'm so grateful for the Moyer Foundation and the staff at Camp Erin. This was part of her closure -- not forgetting Gavin but closure to the trauma our little girl has endured.

{Simply Doing Life}

2011-05-13T10:43:00.000-07:00

These past two weeks have been filled with so many random happenings it’s left me with little time to reflect and write. Now that things are slowing down I’m looking back and thanking God for carrying us through once again.

Nothing major happening -- just simply doing life, our kind of life.

Illness made it’s nasty way though our house and took us all down pretty hard -- but Angela took the hardest hit. She is just finishing up her antibiotics and is finally getting back to the Angela we know, but it took so much to bring her back from lots of regression due to her illness.

She continues to be our little miracle when it comes to feeding. She is now taking up to eight ounces by mouth at each meal and I’m so happy to report that she is finally gaining a little weight! We took her back to the docs yesterday for another minor issue and found out she finally hit the twenty-one pound mark -- that is amazing! She is still getting tube feeds during the night to make up for her fluid intake, but the progress she has made this month has blown even the experts away!

Angela is changing right before our eyes. It is such an honor to call myself her mommie and be apart of her amazing story. It’s hard to believe she is the same child I met for the first time back in October of 2010 -- her little brain is healing and I think her spirit is too.

Life is amazing. It’s so hard to see the beauty when you are going through the daily grind -- especially the chaos dealing with chronic issues and disabilities brings along, but it’s totally there waiting to be claimed.

{This Kind of Mother}

2011-05-07T08:06:00.000-07:00

After Gavin's death Mother's day seems to be the hardest holiday for me to cope with. That mommie instinct in me gives me that overwhelming desire to gather all three of my little ones and squeeze them so tightly -- and we all know that's just no longer possible.

I never imagined that I'd ever be a mother -- not to mention this kind of mother. The kind of mother who understands on the most deepest of levels what it means to cherish each and every breath my little ones take. The kind of mother who was given to ability to push through -- to become a survivor of my own life's chaos. The kind of mother that was given a chance to love a child who was not born of my flesh but birthed in my soul and spirit -- a bond that nothing can defy.

I look at my two beautiful little girls and I thank God for allowing me to stand by their side and watch the little details of their lives unfold right before my mommie eyes into this huge amazing thing. In the quietness of my spirit I breathe in the memory of my little boy -- trying to remember the weight of his little body in my arms and thank God for the opportunity to care for him for three and a half years. I'd be lying if I said three years was enough but in so many ways Gavin continues to live in a very present way through the very essence of my motherhood.

This kind of mother carries scars and wounds but also walks strong and proud, as my scars tell an amazing story.

A story of hope and healing.

{The Day After}

2011-04-25T10:39:00.000-07:00

I often wonder what that day was like -- the day after people witnessed first hand that empty tomb. I mean, just think about it. It's so easy to think of it in terms of a nice story but if I picture myself in the shoes of the women who went to go mourn Jesus at his tomb and instead saw that it was empty and only the cloth that wrapped his dead body was left behind -- can you even imagine the crazy adrenaline rush that they must have experienced. It's seriously mind baffling.

Easter has always been a great holiday but I will be the first to admit that I didn't always think it was super cool for the right reasons. I love candy and sadly I think that in the past the yummy candy was all my mind was focused on. This all changed since Gavin's death -- after all that's really what easter is all about -- Jesus' death and the possibility of new life that came from his resurrection.

Yesterday we spent sometime with Gavin at his grave. I just cant help but be filled with an amazing hope standing looking at my little boy's grave. The though that this grave is only but a symbol of his life -- a place for his sick, frail shell to rest and the realization that my little boy, his thinking, feeling and sweet spirit is not stuck below that ugly mound of dirt -- it's just crazy. I often wonder if that surge of hope, joy and peace is a tiny glimpse of what it was like for those women who found Jesus?

I just wonder.

We had an amazing time as a family yesterday enjoying each other and taking time not only to remember the amazing resurrection but also taking time to remember our little boy. I've said this before -- but i just wish I could describe what it is like to have all three my babies in one spot. Being at his grave just feels right. I know it's not for everyone, but for this mommie it's just right.

{Special Needs iPad: App Review}

2011-04-21T09:07:00.000-07:00

Last week I purchased this very cool app for Angela to play with. I had no idea of just how cool it really was until I myself started playing around with it. The app is called Alpha Baby. They offer a free version but the in app upgrade is inexpensive ($0.99) and makes it way more customizable.

Some of the apps great features are that you can record you own voice for almost everything -- all the shapes, colors, letters and photos. You control how big the graphics are displayed and also how many graphics you want on a screen at any given time. This is very useful for kids with visual impairment. Sometimes too many object on a screen can be very difficult for Angela to comprehend -- simple is best for our little girl. The option of size of graphic also comes in very handy when using the quiz mode, which I'll touch on in a sec.

When Angela touches the screen, which we have chosen as white but also is totally customizable, the objects appear. You can choose to display a mix of numbers, letters, colors and images or just simply pick one or a mix of the different learning topics. Once the objects are displayed, which also are accompanied by ether a computer voice or your own, she is able to drag the objects as well as magnify and shrink it, depending on how long she holds her hand down on the screen.

The iPad is amazing for kiddies with special needs, particularly Cerebral Palsy, but often time the accuracy of the child's aim is poor, which makes using some of the app a source of frustration. Well, this app has a built in quiz feature, which is a great tool for practicing the accuracy of each touch. I'm sure it was meant as a learning tool to find a specific number out of a series of numbers, letters, colors or photos, but if you turn down the number of objects displayed be set at one and enable the quiz function the it becomes a game of hit the target. Once the target is hit you can use the computer's voice to reward or you can record you own exciting message for you child to hear -- so very cool!

We uploaded lots of photos that represent Angela's daily life like, toys, iPad, walker, and family members and had each of us record our own voice on the different photos. So when Angela hits a photo of Adam, she hears his voice saying, "daddy". This makes the image she sees with her eyes connect with the voice she hears and helps her overall understanding as well as her visual abilities.

This app gets a two thumbs up from this mommie!

Click Here to read my other special needs iPad app reviews.

{Less Than Perfect}

2011-04-20T10:15:00.000-07:00

I am not perfect. Shocking, I know. This seems like such a basic concept -- no human is perfect, yet for some reason I make myself feel like I need to defy the odds -- reach perfection in every area of my life.

This thinking has really messed with me in so many ways. I get really good at something then throw it all away simply because I couldn't reach perfection -- there was someone better and that didn't sit well with me.

Many people don't know that I studied classical guitar is college. I was really good. I memorized an entire Bach cello suite for my senior recital. I would get up every morning before the rest of the dorm was awake and hit the studio and play for hours making sure I hit each note with perfect tone. After I left college I sold all my guitars of eBay. I was frustrated that I wasn't the best. I was so dumb.

This has translated into many different areas of my life. Last year before Angela joined our family I was doing so good with the gym. I had lots of time and I didn't have a little one to watch after. Now I somehow keep telling myself that since I can't get on the treadmill and run three miles since i have to keep Angela with me then I really should just not bother at all. Again -- I can be so dumb. This week I'm forcing myself to settle and realize that being less than perfect or less extreme is totally ok. So I'm just walking with Angela on the indoor track -- and it's working out just fine.

I think God loves us less than perfect. It's in our imperfection that his awesomeness is most awesome! I just need to keep telling myself this. There will aways be better photographers than me -- it's doesn't mean I need to throw it all away and find something else to obsess over. I am me -- no other person, and God really digs this girl just the way she is.

{Pureed Food for Children with Cerebral Palsy}

2011-04-18T16:34:00.000-07:00

Ok, so sorry for the official sounding title, but after trying to search the internet with those exact search terms and coming up empty handed, I wanted to make sure other clueless in the kitchen mothers with children with feeding issues, like me, could find what they are looking for.

Anyway, Angela is an eating superstar -- really she is. I originally went into this whole feeding thing really just wanting to give Angela the experience of food. I figured she would always be tube fed -- and that was ok with me. Well, I think Angela might have other plans. She is beginning to take almost 4oz of pureed food during her evening feed. I was thinking if I could give her a meal by mouth that had enough calories to supplement her evening feed we may just be able to get her off those darn tube feeds someday in the future. As a disclaimer, we are moving forward with extreme caution. Even though Angela did pass her swallow study, she still does not know how to swallow very well. We are using tons of oral stimulation including using her electric tooth brush on her tongue and cheeks before meals and also only giving her 30mins to attempt to feed, which is funny since can eat up to 4oz now in about 15mins. Anyway, we are watching for any and all signs of distress -- but so far she really is doing great!

I know a lot of moms who read this blog have children with some type of medical or developmental issue, but for those who do not, let me explain why eating is so difficult for Angela. Basically her muscles in her mouth -- just like throughout the rest of her body just do not function in the way they should. Angela's mouth has very low tone. It's hard for her to keep her tongue and drool inside her mouth and she really does not yet have an intentional swallow. This makes feeding very difficult.

Because feeding is so difficult, I want to try to condense her calories in the smallest about of food possible. With the help of some friends and also my own ideas I came up with this simple recipe:

4 Average Size Sweet Potatoes, Boiled for about 20min until Soft, Peeled and Cubed.

8oz No Sugar Added Canned Pears, Cubed.

2tbs Coconut Oil

2tbs Agave Nectar

1tbs Cinnamon

I basically threw this all in my below average blender and made sure all the chunks were out. I used a large 60ml syringe to transfer the puree into the baby food containers, this way I could ensure there were no chunks in the food. I was able to fill seven 4oz jars. I used my less than average nutrition skills to calculate the nutritional content in each jar. Each 4oz jar has about 140 calories and about 5 grams of fat.

I had Madison taste it and she gave it two thumbs up! I can't wait to see what Angela thinks of it tomorrow!

{Learning To Eat}

2011-04-13T07:23:00.000-07:00

On Monday we packed up and headed down to duPont for Angela's barium swallow study. When Angela was born she was taking a bottle but because of her incredibly poor suck she was not gaining weight and it was decided that a gastronomy tube would need to be placed. Although she was not showing signs of aspiration like pneumonia or choking, during the hospital stay for the tube placement they decided to do a swallow study because of her presentation -- they just couldn't believe that she was not aspirating.

Her original swallow study showed complete frank aspirations, which means that all the food that she was putting in her mouth was going directly into lungs during the test. This is obviously very bad. At that point it is a bit blurry. Seems Angela was made completely NPO, meaning she was not allowed to take anything by mouth. During that next year of her life she was not given the opportunity to do anything orally hence the extreme oral aversion when she came into our home in December.

As soon as Angela joined our family she started to take off developmentally -- she was gaining strength as the days went by so we really wanted to give her a shot at taking food by mouth. So this past week we gave her a second chance at the swallow study. They placed six small cups of barium all with different thinknesses ranging from thin liquid like water all the way up to a thick puree. Angela sat on the Xray table with the camera facing her head and they took video of the barium as it went down.

To everyone's surprise she was able to swallow and protect her airway on all the different consistencies -- this is huge, amazing news. The speech pathologist was totally surprised and the room was filled with so much excitement! Angela is a different child than she was just a few months ago, it's almost hard to believe!

We left the study with a go ahead to start feeding trials with Angela at each meal for 30 mins. She is allowed to take as much as she will tolerate in that 30min time frame, which has been about 1.5oz. So cool. I wouldn't say that she totally loves eating but she certainly is tolerating it. It's more just a battle of wills -- she doesn't like doing anything mommie or anyone actually makes her do -- so typical almost three year old behavior. She really does not know how to voluntarily swallow and move food from her tongue to the back of her throat -- she this is very hard work for her.

Feeding opens a whole new door for Angela in the world of development. Feeding is a huge benchmark for speech and sensory development, not to mention drool control. I am head over heals proud and in love with this little girl -- she is totally beating all the odds stacked up against her!

{Running a Race}

2011-04-12T07:11:00.000-07:00

This weekend We headed to Hatfield, Pa for a ten mile race that Adam had decided to do. We had a great time -- and of course watching my amazing husband cross the finish line was so cool. This race also offered a kids half mile fun run and of course Madison decided she wanted to run. She has been preparing, just like daddy, for a few weeks now. I wasn't so sure how she would do considering when I take her to the YMCA and let her run the track she starts complaining and pleading for water just a few strides into her run.

To my surprise she did so great! The kids were so fun to watch. Once that starting gun sounded their little legs ran so darn fast -- everyone was yelling to them to slow down, so they would be able to finish. A few things really stood out to me as I watched Madison race. Of course I was so darn proud. I think as parents anytime our children step out of their comfort zone we as parents get this sense of total pride. But as I watched Madison come down the home stretch I saw so much more than just her stepping out of her comfort zone -- she was so stinkin' proud of herself.

Out of all the things I want to instill into my kids is self confidence. I totally lack in this area and I don't what to be the way my kids live. If Madison has self-confidence I really feel like all the other values that we really want her to grasp will fall into place. If Madison is full of confidence, making a tough choice that goes against the crowd might just be a little easier.

As a mommie I need to make sure that I am constantly building my little girl up (and Adam as well). At time I know I can place my expectations just a tad to high. I want her to achieve goals -- not set them so high that we set her up for failure. Last week we were sitting on the couch and Adam and I had a talk with Madison about what it means to set goals for yourself. This was an interesting conversation with a six year old. We talked about how she needs to first try to run one lap and once she achieves that she could shoot for two. Once she can run a half mile then she can push herself a little bit more. She thought this was pretty cool -- and the idea of one day running with daddy seemed to spark her interest.

My family fills me with so much pride. I love walking into a store or an event such as this race and being totally thrilled to be in the position that I am in -- a mommie to three amazing kids and a wife to an amazing man.

So proud.