A Year For Hope...

I know we are all probably thinking the same thing right about now -- where has this year gone?  It feels like just yesterday we were just being discharged from duPont on Christmas Eve -- so thankful we made it home in time.  Now here we are getting ready to say goodbye to 2009.  There is a huge part of me that wants to hold on to this year forever -- I don't want to move on.  It's hard to enter a new year without our little boy by our side -- physically by my side.  But there is no stopping it -- it's almost here and it's coming weather we want it to or not.

Deep down inside I know this is going to be an amazing year.  I am claiming this year as a year of hope.  Hope -- it's what our little boy's life was all about.  Finding joy in the darkest of moments, finding peace hidden deep within the chaos, choosing to live life no matter what obstacles are thrown in the path -- for me this is hope.

Our family has been living deep in the valley and we are ready to shout on our mountain --  There is still so much living to do, even in the midst of the pain.  If fact it's that very pain and sorrow that somehow fuels my passion and drives me to seek the amazing healing possible for our lives.

So to you, Mr. 2010 -- are you ready for us?  You are our year of hope, and we plan of squeezing every last bit out of you!

Christmas Without Him...

It's over.  We made it through our first Christmas without our little Gavin by our side.  In all honesty it wasn't as bad as what I had thought it would be -- we actually managed to find special ways to remember our little boy in all the craziness of the holiday.  Adam and I had a talk in the car on the way home from Christmas Eve service.  We talked about what we thought it would be like if Gavin was still here and spending this Christmas with us here on Earth.  Our first though was that we probably would have been in the hospital.  Then we started thinking that Gavi probably would not have been cognitively in tack, so there would be no smiles and no opening of presents.  We figured he probably would have been on a ventilator, if they even allowed us to be home, which means that Adam and I would have been so stressed out and not sleeping at all.  Would we really have had a Christmas as all?  -- probably not.

Gavin death will forever leave a huge scar on my heart, but during this Christmas holiday I started to recognize all the gifts he left behind for us -- his family.  He gave us freedom, freedom to smile and laugh and to spend time with Madison.  He gave us a deep longing to live life to its fullest potential, making memories out of what most would find to be trivial.  He gave us the ability to love and to feel the deepest of love which really can only be felt after death -- when the longing to hold my baby goes deep to my core.

We spent some time at Gavin's grave on Christmas Eve -- it was an amazing time of just being still and recognizing the life that was once our little boy's.  Madison sang and we all tried to hold it together while she sang, questioning "why God did you take my brother.." -- so sad to hear yet so healing for my little girl to put in words the questions she has in her mind.  My mother had the idea for our family to release balloons on Christmas day -- we all watched the balloons float to the sky and yelled..

Merry Christmas Gavin!

Merry Christmas...

What I Live For...

It is so easy these days to get stuck in our feelings of sadness and longing to see our little boy, but I'm finding that even in the midsts of my pain and sorrow there is so much to live for -- there is so much to keep running and chasing after.  As I look through these photos from our little family photo session,  I'm overwhelmed with love for the people God has choosen just for me -- given just to me. This is what I live for.  Our family has walked together through the deepest pit around and now we are walking right back out -- together.

The best feeling ever.

Just Thinking...

I had originally wrote this post a few days ago and at the time decided not to post it because I felt like the moment had past.  As I went back through my posts tonight I saw this and felt like I needed to share it.  I want this website to be a place of honesty.  I want to be able to lay my life out for you all to see -- for people to understand what it is like raising a medially fragile child and walking not only through our journey with Gavin here with us but also showing you the raw emotion that comes after death.  I can only pray someone finds hope and healing by following our journey.  A few days ago I wrote these words:

Sometimes it is just so hard. I miss my little boy much. Today we went out and took family photos and I can't help but wish his little smile and cool green wheelchair was in those photos.  The pain is so real -- and it hurts so bad.  At times it can feel like a knife piercing my heart and taking away the very breath I breathe. The pain hurts, but in a way it feels so good.  The pain at times draws me near to my little boy -- it helps me to remember the deep love I have for him.

Tonight Madison had practice at church for the kids Christmas performance on Sunday. As I watched the little three year olds I couldn't help but want to see my little boy up there. I felt my emotions starting to flood and now I sit here just thinking -- thinking how this just stinks. I can make my mind realize that my baby is no longer suffering but it doesn't satisfy my intense desire to see my little boy again.

There are times where I just want to go back to the past hold him a little tighter and look into his eyes. Little deeper.

Sigh.

Sometimes it's just so hard.

Sometimes this journey is so hard it can seem to stomp you so far down it's hard to even get out of bed.  Then there are the times where if you look really hard there is so much hope and joy to be seen through the dense fog.

Are you looking?

New York City...

Yesterday Adam, Madison and I made a little trip to the city -- New York City!  We had lots of fun, though it was a little weird not have our little boy with us.  Adam and I both deserve gold stars for our previous trips with Gavin -- and his wheelchair.  Who takes a kid in a wheelchair to the city, in the middle of winter and uses the subway with no wheelchair access -- that would be us and we loved every second of it!

This year was all about Madison.  We parked uptown and went to the American Girl store where Madi's bitty baby got her annual overpriced Christmas dress and Adam and I made remarks about how crazy these people are for spending thousands of dollars on doll and doll accessories.  These were the moments I wanted to do my scream of "don't you know I just lost my baby boy -- this is not what life is about."  But don't worry I held it together.

After American Girl we strolled up 5th Ave in search of the Disney Store and FAO Scwartz where Madi wanted to play on the giant piano.  It's crazy how Madi seems to know her way around the store and took us right to the piano -- even walking past the barbie section without hesitation!

Adam then made is dream stop at the huge Apple store where we both drooled and realized that we have no money.  It was all good -- it's a huge store with a very cool elevator.  We then ended out evening with a nice dinner and a few minuets admiring times square.  We had a great time but it's always difficult -- wish our little Gavin was still here to be apart of our memory making.  I saw so many cool little trinket toys that Gavin would have loved -- but then I remind myself that he probably would have been on a ventilator and not loving much of anything. Then I am once again filled with peace reminded of my little boy's healing and end to his suffering.

That's just how my mind works.

BabyLegs Update...

You all are amazing -- I am totally shocked how many BabyLegs we have collected and are going to be able to take to the Alfred I. duPont Hospital for Children.  I'm hoping to get close to a thousand by the end of next week.  We still have a little ways to go but we are getting very close.  With the amazing promise from BabyLegs to match our donation, we should be delivering close to 2000 BabyLegs to the hospital -- that's two thousand children that will be touched by your generosity! 

Because I know many of you choose to purchase BabyLegs instead of buying Christmas presents this year we wanted to give you this graphic that you can freely use to let people know that you purchased BabyLegs in their name.  You can simply click on the graphic and it will take you to the flickr page where you can download it to your computer and print it out.  

This means so much to Adam and I, as it is a great way to honor our little fighter who wore these cute little BabyLegs almost every day of his 3 1/2 year life. We pray so hard that Gavin's life will continue to change this world.

I have no doubt that it will.

Redefining Me...

Now that Adam and I are not providing intensive care to our little boy our world has really opened up.  Not that I wouldn't give anything to have my little Gavi back by my side, but since he died Adam and I are able to do so much more -- things that we have never been able to do.  It really means that we are having to redefine our lives -- who we are and what we enjoy doing.

Adam keeps mentioning that he wants to learn how to cook -- I keep mentioning how I really don't want him to learn how to cook.  Me -- I have so many things I want to do.  I really want to take my photography to the next level, but of course my lack of confidence tends to get in the way.  I really want to get my butt in shape and I have no excuse why that hasn't happened yet.

There are so many things I want to do and then there are the things God would have for me to do.  I have no idea what those things are -- I don't even know if I really want to know right now.  I guess I'll just try to get keep my heart and mind open.

For now -- I am getting my booty to the gym.

Giving Him Back...

Yesterday, while I was at the salon I was talking with my stylist about Gavin's final days.  Even though his last days where probably the most difficult days of his and our life there are so many things about those last moments that I would never give back.  For those who are not familiar with our little boy, it is important to know that Gavin never follow the book.  You would think he would do one things and he ended up doing another.  He never followed what medical science said should happen -- he wrote his own book.  This was true to the very end.

After about 24 hours of the bipap machine acting like a ventilator, as Gavin was no longer triggering any breaths on his own, we along with the doctors and in accordance with the DNR we had decided on -- we were told it was time to let him go and remove life support.  All the doctors and nurses gathered in the room to watch as the ventilator was removed, waiting for his final breath and to pronounce his death.  I held my baby in my arms and Adam and I said our final goodbye -- or what we now know was one of many final goodbyes.  After the ventilator was removed -- after not breathing on his own for 24 hours, our little fighter decided it was time -- to breath.

Inhale.

Exhale.

Oh, Gavin.  That was about all I could think.  We gathered ourselves together and realized that his death was going to be a long process.  Eight hours later his breathing, although very shallow,  was still steady.  About 24 hours passed and although he was still breathing he was beginning to suffer.  His lungs were not moving enough to clear the fluid in his little chest and he essentially be began to drown.  This was the worst experience I have ever had.  I will never forget the loud crackle that filled the room with every inhale and exhale.  But Gavin just would not stop.  What was he waiting for?

Hours went on, in fact another entire day has passed.  It was now 50 hours since we said our first goodbye to our baby.  We had another few moments were his O2 levels would drop to the next level - 90 to 80, 80 to 70, 70 to 60 -- each time we thought this was it would weep and mourn the loss of our little boy.  So 50 hours later we watched our little boy fight to live -- fight to maintain life even with O2 levels in the 50's.  We asked what is he waiting for -- we had many thoughts.  Our nurse thought maybe he needed to hear Mommie and Daddy say we were going to be ok -- so we let him know.

"Mommie and Daddy are going to be ok, you can go.  Go be with Jesus Gavin -- you can stop fighting."

Inhale.

Exhale.

He just would not stop.

Then it happened.  As we watched our little boy slipping further away Adam started to pray -- "Lord, we give you back our little boy." We thanked him for giving us our little boy for  3 1/2 years, thanked him for the amazing journey he took us on.

A few minutes later, with my hand on my baby's chest I felt his little heart stop and he took his final breath.

Gavin was not our own -- he never was.

Grateful...

When I look back over the past three years it is almost overwhelming just how blessed our family has been.  People -- you -- from all over, have chosen to not only pray for our family but many of you have blessed us financially, with a new house and lots of other amazing things.

For this we are forever grateful.

I'm not sure if I have ever taken the time to just thank you.  I am sitting here is a new house made just for my little boy and our family, simply amazing.  Yesterday a new swing set was delivered for my little girl, simply amazing.  I look out onto our brand new deck complete with grill, simply amazing.  The list could go on and on, and it's not just the material things we are thankful for.

Do you know how many families go through the journey of chronic and terminal illness alone?  There are so many.  If you were to walk through the hospital halls you can probably pick out the people doing "this" on their own -- just by looking into their eyes.  Adam and I are forever grateful for each and every one of you -- those who spent time begging God to save our little boy and those who spent countless hours making "Gavin's House" a reality.  

We are so blessed.

We are so grateful.

MIssing My Little Boy...

Tonight at 10:43 will be exactly one month since I have seen my little boy. I miss him so much and as I have said before, it's crazy how some days it just hits me hard -- today has been one of those days.

I just want to see him. I just want to care for him. I would do anything just to take a peek at his monitor, as I so frequently did over the past three years, and see his heart beat. That monitor was so darn annoying yet so comforting at the same time. Each beep meant another heart beat of life.  I want to smell his little duckie as it is clenched in his puffy little hands.  I want so many things -- things that I just can't have.

Today Madison and I stopped to get coffee and I was having all these flashbacks of bringing both the kids in daily to WaWa to get my morning coffee. When Gavin was small and still in an infant carrier and before Adam and I became enlightened to the idea of carrying all his pumps and monitors in one big bag, I would have Gavin in the crook of one arm and a TPN bag, a Feeding pump bag and a monitor bag in the other arm -- not to mention my little girl who wad only a small tot and my purse. I was a nut. I fully admit it.  And then there were the days after he got his power chair -- we would still all go in.  I wouldn't have had it any other way.

The thing about death that is the hardest for me is that I can't control it.  I can't bring him back. I can't make the hurt go away. It's not like there is a relationship to heal or a long lost friend that needs to be found -- I can't bring my little boy back and after 3 1/2 years of making things ok -- making them work despite the struggle it would be -- I cannot make this work.  I can't control death.

That just stinks.  

Makes me realize how greatful I am for hope.  

If I didn't have Him to pull me out of this pit then who would?  

The Big Elephant...

Grief is a crazy thing. I find that I can keep it together most of the time. When I think about Gavin it's usually just noticing he is not here. For example, it feels so weird when we leave the house -- no wheelchair to lug out the door, no tanks of oxygen to load and no gathering of iv supplies and bags. We just simply leave, which is a new concept our family has never experienced before.

Then there are the times where the longing to smell and touch my little boy is so strong it could bring me to my knees. My desire to feel his little heart beat consumes my mind. The pain can run so deep. It comes without warning and can sometimes leave just as fast or it could linger longer than I physically feel capable of bearing.

Another crazy thing about grief is that it often hangs out like the big elephant in the room that everyone is staring at, in fact they can't get their minds off it but I guess it is easier to ignore than talk about.

I want to talk about the huge ugly elephant -- because to me it is beautiful, it's real and it will forever be apart of my life.  There are times I just want to scream in the middle of the mall, "do you realize the amazing little boy I had for  3 1/2 years -- do you know he changed the world."  You see talking about my little boy -- his life and death, is my only way to show that his story is very much alive and well.  I don't have a little boy running around to remind the world of his existence.

So often people see death as an untouchable topic.  Death is often a beautiful story -- how more amazing can it get for a person to find total healing and be in the arms of God.  Adam and I are learning so much through our little girl.  She is teaching us that death is very ok -- no need to sugar coat is with toppings like passed away, moving on, going to the golden gates of Heaven.  She reminds us daily that Gavin is "dead" -- and our response is, "yes he is."  She keeps it real.  

Of course there is so much pain we feel but by keeping things real that huge elephant becomes approachable and just one of us -- part of our family.

BabyLegs News Flash..

Thanks to the BabyLegs Company for placing our campaign right on their web site! Keep those donations coming. We have been overwhelmed by the number of people wanting to make a difference in the lives of families dealing with illness this holiday season. Click here to read more details on our "BabyLegs for Kids" Campaign.

Go BabyLegs!

Dr. Christopher Raab...

I have spoken many times about just how great Dr. Raab is and what a huge impact he has had on our lives.  The way Adam and I choose to live our life and raise our children was really only made possible through Dr. Raab.  He believed in quality of life -- giving us the tools we needed to care for Gavin at home, especially during his last months.   The greatest thing about him is that when he walked next to my little boy, if he was in crisis or not, the compassion and love poured out of that man.  Even though I hated to dial his number, knowing that this meant I needed help, I knew that there would always be a caring voice on the other end -- no matter what time of day. This is why I sent in the following nomination for the 2009 Physician of the Year.

We need your help.

Even if he doesn't win I want to send him this nomination -- so he can know the impact he has made our our lives.  Please leave a short comment thanking him for what he did for our little boy, the countless hours spent searching for ways to help him and the compassion and love he showed our family.

Nomination for 2009 Physician of the Year:

Every once in a while a person comes into your life, whether by choice or not, and leaves a lasting impact.  Some of us are lucky enough to not only encounter that individual but also be forever changed because their impact was so great it forever changed our life and impacted our world as we know it.

For our family this person was Dr. Christopher Raab. Three and a half years ago our family entered the door of the Alfred I. Dupont Hospital for Children -- scared and tired, searching for answers, answers that would make our little baby well. From the moment we talked with Dr. Raab we knew that he was different from the other residents and Attending Physicians that had crossed our path over the previous month.

Three and a half years later, three weeks after the death of out son, our family remains changed forever. Yes we are missing our child but we also were given so many memories to hold on to thanks to Dr. Raab.  You see, he let us live life.  Times where other physicians would have kept us inpatient Dr. Raab equipped us with the tools and training we needed to be at home creating memories.  He supported our desire to give our child quality of life to the very end.  He went above and beyond to find answers. He was able to look outside the box to find treatments that would give our little boy quality of life and when the time came, he was able to help us stop -- to make our child comfortable and give us time as a family.

Dr. Raab showed us compassion. He was willing to hurt when we were hurting and was also able to lead and guide us in what was best for our child when we were too weak to do it on our own. We were never alone -- not once did we feel we were doing this alone. Dr. Raab allowed us to be part of the team. He kept us grounded and also helped us find hope when we struggled to find any hope at all.

Three weeks ago we said goodbye to our little boy. Even though it was not physically possible for Dr. Raab to be there by our side -- we knew he would have been there if he could.  Dr. Raab fully equipped us not only to survive parenting a medically fragile child but also to say goodbye and recognize that our little boy was done fighting. For that, we are forever grateful.

Please consider Dr. Christopher Raab for the 2009 Physician of the Year. Our family is only one of so many other families whose lives have been forever changed by Dr. Raab.

Sincerely,

Adam and Karen Owens