Tuesday, April 24, 2012

{Holding Nothing Back}


I've changed so much as a mother over these past seven years.  Actually sounds kinda funny saying that as seven years is such a little amount of time -- but I guess if you take a little Karen Owens life experience inventory, I guess I can claim a bit more than the average mother.

I remember being a first time mom to Madison -- buying the best and reading every parenting magazine known to man. I was pretty much a typical young first time mom.  Then Gavin came along.  At first I was still that typical mom but then after we learned that his days were numbered I began to change. 


He was extremely medically fragile. But over time I learned to take risks and we soon embraced it as our new life style.  We wanted to hold nothing back from our little boy, knowing that it was our job as his parents to cram as much living into what ever amount of time God was going to give him here on earth.  


Gavin's life helped prepare me for this new season.  So many things that we did with and for Gavin just simply don't work for Angela and Jayden, but probably the most important lesson learned, applies to the point of being life changing.  Holding nothing back.

Having children with special needs can be scary.  As a mother my first instinct is to hold them tight and never let another human being touch them.  Will they know how to hold her? Will they be able to understand what he is trying to say?  These are all the things that go through my mind.  But holding them back from life and experiencing things that typical children experience benefits them in no way.


Letting go is hard.  But I've learned that letting go is the very thing that lets them grow.  I am often asked by so many people what my secret it -- how is it that my kids make such amazing and fast progress.  Its makes me giggle because I don't do anything at all.  I'm the same stressed out mommie who loves at the end of the day to put on my sweats and change my name to anything but mommie.  But what I do do -- what we do as a family, is simply let go and let our children live.

And this, I'm very proud of.

We had our meeting with our new church regarding Angela joining in at kids church -- amazing.  Actually amazing is an understatement.  After church we walked into a room where about twelve kids ministry staff and volunteers were all sitting in a circle waiting for us to join them.  They were all there for us.  To simply learn about us and to learn how they can support Angela and give her the same opportunity to learn about the God is a very real and appropriate way for a three year old.  Angela is totally over big church and if she could talk I'm sure she would have some choice words for us making her stay with us these past few weeks.


Inclusion in the church is not only needed it should be done without any questions asked.  Jesus was all about inclusion -- in fact he seemed to seek out those that had the most trouble fitting in. Yet somehow as Christian we kinda messed this all up and seem to think Church is all about us.  We can be such idiots some times.

So excited for Angela and one day Jayden will be ready to join his big sisters.  Holding nothing back -- my children deserve nothing less!

Tuesday, April 17, 2012

{Watching Her Smile}


I honestly have an amazing life.  I have the incredible privilege to come back to this blog a few times a week and tell you just how amazing my family is,  how my little ones are growing and healing and tell of how God continually proves faithful to our little family.  So very cool.  This post is no different from the last -- another miracle happening right before our eyes.


I mean -- seriously, just look at these photos.  Who is this kid? Big things have been happening for Miss Angela.  I'm not even sure where to start.  Ever since Jayden came home Angela has had one thing on her mind -- how to get closer to Jayden.  I swear she is just tying to figure out in her own way how to get the upper hand.  She knows he's bigger and stronger and can move so much better than her -- so she's planning her attack.  Angela can now roll both from belly to back and back to belly, which of course she mastered in her many attempts to chase Jayden.  She is also able to now roll up on her side and just chill there for awhile -- big stuff.


Angela has gone through this huge social transformation. She has this strong desire to interact with her world and talk -- this girl is so loud and I swear she is saying something important.  It starts at the bottom of her feet and bursts out her little mouth -- it's just obviously big stuff she's talking about.  Her desire to use her talker is also growing stronger.  Although she still is not able to visual aim, she does recognize that she uses her ipad to talk.  For example,  we went and saw the Easter Bunny and we told Angela to say hi -- she reached down for her iPad and started tapping away frantically trying to hit the hello button.  She totally understands communication now and although she is unable to express her thoughts she totally understands everything that is said to her and about her.  She has perfected the art of nodding yes and no, which again I kinda think Jayden's banging his head against his highchair helped her to find the fun in saying yes.


Angela's seizures are still an issue for her.  Though -- you would never know it.  Although her Keppra has increased a few times she still keeps breaking through.  We are praying that this most recent increase will do the trick and we can say goodbye to seizure land for awhile. 


Another exciting thing happening in Angela's world is that she is going to being going to kids church on Sunday mornings while mommie and daddy go to the big service.  This is a huge step for her/me.  At our other church she did come up to her class a few times but I was always right there and was able to help her nurse keep Angela on track.  Our new church blew me away with their excitement in having Angela join all the other preschoolers.  They actually approached me our first time visiting and let me know that they could make it work for us.  Next Sunday we will be meeting with the leaders to talk about Angela and her needs and how they can help make church successful for her.  So cool -- I'm excited, maybe a bit nervous.


I know I say it all the time, but I'm just so honored to be her mommie.  God could have chosen any family, and yet he choose us -- I'm just blown away.  

I just love my little Angela Piper.

Monday, April 16, 2012

{Watching The Miracle Happen}


I will be the first to admit that this little man is a challenge.  Jayden is his own person -- he is so unlike most brain injured children.  He follows no rules of what he should or should not  be doing.  He is writing a whole new book.  Every therapist that has been in this house will just sit and watch Jayden. What you read on paper and what you see in person creates this contrast that can be hard to understand.  It's hard to sort out what difficulties are due to the brain trauma and what are due to his lack of family his first two years of life.


We have had a rough couple weeks.  Late last week I was reaching stress levels I haven't felt in a very long time.  The constant redirection and behavior modification -- it was just really getting to me.  I had a few times to myself where I would go out and run and I had the same conversation with God each and every time -- how in the world am I going to do this?


It's funny, and I know I've mentioned before -- these feeling are not new at all, in fact I'm now starting to remember going through this very same process with Angela.  Feeling like the hurdle in front of me was so big. Feeling like the challenges were just to difficult to face.

Then this weekend happened.  


Something clicked in Jayden these past few days.  The little boy who once lived in his own bubble started to come out.  He has begun to smile and his awareness and ability to interact with his world around him has taken off to levels that are mind blowing.  He is vocalizing to the point where he will mimic words with un-enunciated little grunts.  He is looking me in the eyes -- He is telling us yes and no -- He is giving hugs and kisses and He is finding further control of his body.

We are totally watching the miracle happen.


This past Sunday in church, Pastor mention this --  Just because we don't hear God doesn't mean that he isn't moving.  In fact, in my experience I would say that in the times I felt God was the furthest away, in the times where I wondered what the heck was going on -- those how could this ever happen moments, those were the very times God was moving the most.


It is both so difficult yet so freakin' amazing to watch the miracle happen.  I expect there to be many times where I'll question -- what the heck? -- but the understanding and knowledge that God just might be doing the most miracle working during those times will totally get me through.

Thursday, April 12, 2012

{Always a Family}


One of the many reason I blog is to give people like you an honest glimpse into this life.  A life that includes raising a child with a terminal illness, dealing with death, finding hope and joy in living life, pursuing the amazing gift of adoption amongst many other things.  The reason I choose to be open and honest is mainly to help people who have never lived this life to understand what it is like -- and maybe help them find themselves better able to support other families in need or dealing with extraordinary life circumstances.

I love talking about Gavin's life and death. This week I just happened to run into a nice lady at Target who happened to notice Jayden's feeding tube and bag.  She mentioned in passing that her daughter had a feeding tube.  After the conversation went on I found out that her daughter was diagnosed with Mitochondrial disease -- the very illness that took our little boy away from us.  It was an amazing moment of being able to use Gavin's life to give her support and friendship.

Then she asked me this -- what was it like when he died?


Umm, wasn't expecting that.  I pretty much gave her my standard answer of, it was so nice to finally see him find peace and healing after suffering for so long. But there was obviously so much more I wanted to tell her -- but so many things I didn't want her to know or ever have to experience.

One of those things that I wanted to tell her is to prepare for some people to never fully understand.  For people to assume so many things that indeed will make an ass out of them. For people to think you have moved on.

After Gavin died one of my biggest fears was Madison.  Not so much in how she would cope but the fact that I had to come to terms with the idea that she indeed will forget much of what her first three years included.  I dreaded the day when she would draw a family photo and it would no longer include Gavin.


This happened about a year ago and it took my breath away as I expected it would.  But he tends to come and go from drawings depending on her thought process and the time of the year and we are totally ok with that -- we need to be ok with that.

However, this week her first grade class in talking about families.  The students were instructed to draw a picture of their family.  Madison either drew Gavin in the sky or told her teacher she was going to -- Madison was told that Gavin could not go on this photo that she needed to draw him on another page -- that this was only for people who lived in your house.

Umm.  Excuse me?  


In all fairness I'm hearing this from Madison so I'm sure there is some version of the story that I didn't hear and I really pray there is.  But what I want all of you to know is this.  We will never move on.  Just because  Gavin is not physically here does not mean he is not a huge part of our family.  We talk about him almost every day -- his photos hang on every one of our walls.  His legacy is so thick I could cut it with a knife.  

Never tell my daughter that Gavin does not belong in her family drawing.  

Madison proudly came home yesterday and told me she put him in the drawing anyway and told her teacher that her mommie told her is was ok.  

Seriously love that girl.

Wednesday, April 11, 2012

{Seven Year Old Conversation}


In all honesty sometimes I forget she's only seven.  Of course there are the moments when she is sitting in the living room trying to fart so loud -- just to make sure we hear her, that I'm reminded of her seven year innocents but most days I actually have to remind myself of this.


Anyone who knows Madison would know what I'm talking about.  She just has this maturity about her that in many ways tells the story of her life.  I used to get very worried about her maturity.  In fact when she started school last year I feared she would have no clue how to interact with normal children who didn't understand what it means to say good bye to a brother or sister or live with severely disabled siblings.  My fears were very quickly diminished as Madison became this social little butterfly and would friend anyone without question.  I remember the first time she came home with a missing "good day" stamp on her calender.  The teacher wrote that Madison was talking with other students when she was supposed to be doing her work.  My first reaction was that I wanted to give her a fist pump or high five.  I realized -- She was just fine -- adjusting well.



Madison is a unique child who has the compassion of an aged adult who has seen both the most horrific and most beautiful of circumstances.  This makes her different but in a very good way.  This is why I often have to remind myself that she is only seven and be careful not to place expectations on her that go beyond her age.  This week Madison and I had a mommie and Madi date.  We stopped for coffee and hot chocolate and then went for a little run.  Madison loves to run -- and asks to come along every time I go out.  We had the most amazing conversations -- seven year old conversations. 


We talked about everyone in our family and listed their strengths and weaknesses.  We talked about how Angela is the best farter in town and how sometimes daddy gets carried away with his vibrato when he sings.  We both giggled so hard.  It was beautiful.  It was just a nice reminder that God has taken care of our girl -- in fact I've got this feeling that He is preparing her for something that will one day blow us all away.

Thursday, April 5, 2012

{New Park, New Neuro and New Glasses}


This week a friend introduced us to the best park ever -- it's called Smith Playground and is located in Fairmount Park in Philadelphia.  This play ground is huge.  They offer such a wide variety of playground equipment for kids of all abilities.  The playground floor is solid soft rubber not mulch, which I have developed a horrible relationship with after trying to push many wheelchairs through it.  We met up with friends and had the most amazing time -- can't wait to go back.  I would love to show you photos, but we had such a great time I didn't even get the chance to take any -- not to mention pushing two chairs around.



This week I also took Jayden to meet his new Neurologist.  Crazy thing is that Jayden and Angela both shared the same neurologist but unfortunately he left the practice so now they are both seeing a new Neurologist at DuPont Children's Hospital. The appointment went very well and we left with an increase and his Keppra since he has grown lots in the past year and also a new scripts for Clonidine.



Clonidine has many purposes.  Gavin was on a high dose clonidine patch most of his life and it worked great for him.  After discussing both Jayden's difficulty with sleep and also his constant restlessness and agitation the Neuro thought it might be a good drug to try as it might address all these issues.


Jayden suffered a non-accidental brain injury.  The damage in his brain was extensive and located several places -- one of the areas with most severe damage was in his frontal lobe.  This is the part of the brain that helps with regulation.  Jayden tends to be agitated lots.  He can go from happy to thrashing in just a few seconds.  This has improved so so very much since he came home, but it's still a struggle for him.



Then there is the ever present sleep issue seen in almost every child with any type of brain injury -- the body just can't seem to get in a regular pattern.  We are hoping the Clonidine does the trick and does not give him unwanted side effects.  So far so good.


Did you notice the two little ones rockin new glasses?  So excited Jayden and Angela's new glasses finally came in the mail early this week.  I'm super happy with how they turned out and all my fears about ordering online are gone.  This site was suggested by a friend and they were so easy to use -- not to mention super inexpensive.  I purchased three pairs of glasses, the average price on them was about $25 -- this included the lenses.  What a deal, especially for the kids who will go through more pairs that I would like to imagine, particularly our little monkey boy.

I love the way they look.  I love that their personality shines though.