Thursday, March 18, 2010

I went in to the boys school to pick them up yesterday and was talking to the receptionist (who also happens to be one of our babysitters) updating her on Paxton.  Another mom standing by overheard me talking about him and must have put two and two together because I never said Paxton's name. She looked at me and said, "are you Paxton's mom?" I said yes I am.  She said, "oh wow it's so nice to meet you, I am so and so.  You are famous and don't even know it."  I, of course went on to say that Paxton is our little fighter and is one of the strongest people I know.  I left there thinking about our conversation.  I know she meant absolutely no harm by her words, but all I could think is what I would give to be a nobody and have my son be healthy. Now, obviously we aren't really famous, but she did know who we were simply by the conversation I was having with someone else.  It sort of made me sad in some ways. I realized laying in bed last night how this has become our life.  That it sort of defines us.  She didn't know me because Austin is super smart or because Mason is our social butterfly. I wasn't the Mom who just had a baby. I was the Mom who just had a baby with half a heart.  Paxton's the baby who is sick.  I thought about it for awhile and decided that's how I can choose to look at it or I can choose to see it as the Mom who just had one of the toughest babies in the world!  She knew us because our baby boy survived open heart surgery at 4 days old and that is miraculous!
I realized that this journey is all about how we choose to look at it.  I choose to be defined by HLHS because it has taught our family more in 6 months than we have learned our whole lives.  It defines us because it reminds us everyday what is important in life.  It defines us because we never take anything for granted. It defines us in our compassion for others.  We realize that it just doesn't really matter if the car hasn't been washed this week or the laundry is piling up.  What matters is rolling around on the floor with my kids

Letting them get dirty and drag it through the house, cause really it's just dirt, it can be cleaned and man if they weren't here we'd give anything to have a dirty floor!

To see the joy they get from being boys is worth every sweep and mop job ever!

I have pretty much learned that anything can be cleaned, fixed or replaced and I have learned that they are all just that...things!

I can say that I was not like this before Paxton. I like my clean house and everything just so.  I can also say I am glad for these serious life defining lessons I have learned.  

I woke up this morning to this comment on my blog. I have mentioned before about "A-Man" Asher is just like Paxton, only stronger.  He has HLHS, he lived in the hospital the entire first six months of his life because he could not be taken off of a life saving drug until his next surgery and he also suffered a stroke during his second open heart surgery.  Asher and his Mama are the epitome of strength. We are proud to call him Paxton's heart brother.  Reading this confirmed that this sickness may define us, but we are better people because of it.  We can choose how we deal with this and we choose to fight and be proud. I have attached below Asher's mom's comment.  Thank you Charity for lifting us up all that time. Thank you for showing me strength when I had none. Thank you for teaching me how to be my son's advocate! For teaching me that we can get through HLHS!

Hey was thinking about you, so i stalked your blog, sorry, bored and a bit lonely,, anyway i cried so very hard, not sure why the pic of you holding paxton made me cry, i just remember how tough you were, and are. Also noticed your shout out to A-rock, please know that I am praying for you, always. Also know that Paxton will most likely make this thing looming called Glenn look easy,, and he is doing so very good now, he is going to be doing 20x's better after his glenn. I hate hlhs, I hate the struggle, and yes we definately should have been at the gymboree, or baby gap, target, starbucks, whatever, but we probably would never have met, and must say you made spending month after month, day after day in the CVICU almost normal, and fun, kinda like a breath of fresh air... This journey is not over for us, it is like climbing a mountain some parts are incredible,easy,beautiful,, you dont even notice the climb,,, other parts are harsh, cold, dangerous, keep your eye on the top, keep your fear at bay, know that God will never leave you, and when you dont have strength, and you think you just can not do it, and you are in the dirty bathroom at the hospital crying, sick, and scared that he is there,, when you are so confused as to why this is happening, he is still there,, how do i know,?? I was alone in the dirty bathroom crying, puking, scared, alone, wondering?? how did my heart boy become a brain boy, how does this happen?? Utter despair, and yet never lost sight because God was still there. You will find comfort, he has promised it to you, and you deserve it. Miracles real miracles, not the stupid petty stuff people say to try to get others to buy into the hype of religon discuss, no real ones, like pax going home before thanksgiving, like asher moving his right arm, those are real miracles,, our boys arent going anywhere, they are the face of God and he can not be ingnored, they are the real miracles, the ones that people can live a whole lifetime and never see,, anyway i miss you, and if you need anything i am not far,,, if wallace isnt home asher isnt a stranger to being at ACH,, love you 

She is right! There is zero way to explain how God has been there for Charity, myself and our sons!  He gave us miracles when we thought they were not possible. Our boys ARE the face of God and holy crap that makes me proud! 

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Anonymous said...

Jenn, Dave and boys,

I still read your bloggs. You are a blessed family, with such loving support. Jenn, you are a strong woman that I admire very much, hang in there and keep blogging! Jen

Neha said...

Your words motivate me and your strength inspires me....I have been following Paxton's journey and looking at his sheer courage and will to move on is what I can look up to. You are right....he is a miracle and face of God and you are a wonderful mother!

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