Monday, April 19, 2010

Really Though...How Does He Choose

Today has been an emotional day for me.  It's like I held it together all week and now as my son's second open heart surgery journey comes to a close, my emotions took over. It's pretty cool how Mama's can keep it together when they really, really need to only to lose it when things are all said and done.  As always in hospitals, you meet so many people. Some doing better than you and some doing much worse.  If I had a dollar for every time one of the nurses, doctors or parent/family member of another child said how Paxton looks so amazing we would be rich. For being a single ventricle baby, Paxton really and truly has made this all look like a cake walk.

From the moment I found out how sick he was, I prepared myself for the absolute worst and anything better than would just be a blessing. I have waited his entire six months and even still wait for the ball to drop.  How. How? Is it that my baby boy is doing so well when so many others are struggling, have struggled or worse, don't make it. I know I will never receive that answer, but it matters to me. It matters to me when I walk down the hall and see a Mama crying not knowing how her journey will unfold.  I remember being exactly in her shoes. I remember not being able to see or dream about the future. I remember worrying every second of the day.  It hurts me. I want to express so badly that there is life with HLHS. There isn't life after because HLHS never goes away. There is no "cure". There will always be medications, doctors visits and restrictions.  It is what it is, but there is a point where you become ok with it. Where the meds become second nature. Where oxygen saturations become a mere glance at the monitor instead of eyes glued to the screen, heart pounding out of your chest at every alarm. There is life with HLHS. I know this.
What I don't know and never really will does God choose.
How is it that I have two beautiful, perfect boys at home and a third right here beside me who may have half a heart, but is essentially perfect as well and others don't have even one.  It hurts me for them.  I want to fix it, but I cannot.  I have spent time pondering if Paxtons diagnosis is worse than others. Would I rather have this than that for my son... Weird? Maybe. But I think when you have a special needs baby you spend a lot of time pondering things like that.  You know, as my friend Matt says, that there are others going through so much worse than what you are.  You know that some babies have cancer, have their chest cut open multiple times, have diagnosis that are uncommon and leave parents up in arms about where to start and how to help.  It's life. As I like to say, it is what it is, but that doesn't mean that I didn't spend today in a heap of tears over life and the lessons it presents us with sometimes.  As many lessons as I have learned through Paxton, the one I am still working on is complete and total trust that all of this is for our greater good.  I can see the rainbow in this journey with Paxton, but if this journey had taken a different direction, I don't know that I would be able to see that rainbow. For those who can, they are truly amazing.  
As I spend this last night in the hospital with my son until his next open heart surgery I am just taking in this entire week. The people I have met along the way. Their stories.  Their hopes and dreams spilling down their cheeks. The fear written all over their faces. It's a tough, tough journey, the hospital life.  You see good, bad, ugly and hope.  You see the work of God in these doctors and nurses. You see the work of God in these children that live their lives getting poked and prodded and yet continue to smile and laugh.  So while my heart is heavy tonight for life and all that it is, I look over at my sleeping boy and allow myself joy. Joy that he is ok. That last Monday at this time, I was tossing and turning in a hotel bed waiting for 4:45 am so I could get up and get this second leg of the marathon over with.  Unsure at the time, how it would play out. 
I stand, once again, on the other side of it stronger, wiser, maybe a little sadder, but also a lot hopeful.  Sad because life is messy, and hopeful because life is also wicked, wicked beautiful!!!

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The Simmons Family said...

That was a GREAT post!! There is life WITH HLHS. I often wonder to myself the same thing..."How does HE choose?" Owen has never had it "easy", but he doesn't know any different. I often wonder if it's a blessing he was born with a sickness.. or if he had been born healthy to become sick. I think the first... he doesn't know what it feels like to be "healthy". My hope is that someday he will feel a whole heart beating inside of him.. have saturations above 80.. and know what it's like to feel strong!

I'm assuming by the post that Paxton is going home soon. HORRAY!! I pray that you'll have a few years before you have to go back for the Fontan. Life is so precious.

Neha said...

This post brought tears to my eyes. God bless Paxton with health and recovery soon. He is a strong guy and will pull it along well, I'm sure. Do take care and keep faith :)

Kaylan said...

Praise God! This is a beautifully written, much anticipated post. Y'all are beautiful, I am so glad to see more pictures of our fighter!! There are big plans in store for Paxton!! He is touching so many already!! I just learned of a couple who is pregnant with an HLHS baby...I want them to come here for comfort and hope. You and your family are an inspiration, and I thank God for you!!

Sue said...

Hi Jenn, My name is Sue. I wanted to let you know, I feel very connected to you and your feelings over your son's heart condition. We adopted a little girl from China last August. She had the Glenn procedure 2 weeks after we came home. She will be having the Fontan this August. My daughter's name is Jadyn, she was 27 months when we adopted her, she lived with her unrepaired heart in an orphanage for over 2 years. With stats in the 60's. These little heart babies are strong fighters! I dont know what HLHS stands for but the correction must be the same. Jadyn had TGA- Transposition of the Great arteries, Pulmonary stenosis and a large VSD.
I wish little Paxton the very best, what a adorable lil man.
hugs to you.

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