Be the EXCEPTION

When the house is quiet, my mind wanders.  Back to the beginning.  I can't believe what an emotional road this has been so far.  If someone had told me I'd have gone through this a year ago, I'd have thought they were crazy.  I always admired people with "special needs" kids.  I KNEW I didn't have the strength to do what they did.  I could never understand how it was that those people were some of the happiest people I had ever met.  Nothing seemed to get them down.  

When we were given the news that day I thought my whole world was coming to an end.  Your baby will never walk.  He may be a vegetable.  Terminate.  So overwhelming.  Every time I think about it I get emotional.  I still don't feel like any of this is real.  You become so used to everything that I supposed in a way you get desensitized to the reality of the situation.  

People ask me how we do it.  How do we just take everything in stride?  My answer is, how do you not?  You'd be surprised what you can accomplish with a positive attitude.  We have learned to look beyond what the doctors say.  Instead of seeing problems, we create a solution.  Rather than brand him with limitations, we set new goals to accomplish.  We refuse to let him be bound by the "rules" of medicine.   There are no finite rules after all... only opinions based on other people.  In MY opinion, my son will make you eat your words!  

And those parents who were so unexplainably happy... well... I've become one of them.  It is absolutely amazing how much happier you become when you start to focus on the small things in life.  The ones that are most important.  The little things become so much bigger when you take the time to realize you only get this moment once.  I've decided that I am making the most of the time we have.  It makes no sense to rush through life only to get to the end and die realizing that you spent your whole life worrying about things that didn't matter.  I don't want to cheat myself or my kids out of the most amazing life possible.  You only get one shot.  Don't waste it on things and people that don't matter.  

I am going to be focusing on advocating and awareness... not just for Spina Bifida but for life.  I'll tell our story to a thousand people because I know that one out of that thousand will take something away from it.  If we can help ONE family and save ONE baby's life from being "terminated"... then we have done our job.  Don't let someone say you can't.  Don't let a doctor say you won't.  Be the exception... No limits people... only goals.  

From Heartbreak to Happiness

Valentines Day - 2013 - Wild Thing

Well, today was the first time that I really felt sorry for myself.  Myself, Brian and mostly Dryden.  It's silly really... the way it all happened.  Honestly, I feel a bit ashamed for even thinking it, but the mind can't help what it thinks.  

I was going through all of Dryden's baby clothes.  It was really crazy holding those tiny little things up. Most of them he never even got to wear because he was so GINORMOUS.  But just thinking about it made me sad.  I remember buying them all.  Each and every one.  

It took me forever to get used to the idea of having another baby.  And although I reallllllly wanted one,  I was TERRIFIED when I found out it was a boy.  I had NO idea how to be mommy to a little boy!!!  I had Tina... and though she isn't exactly "girly" she's certainly no boy!  

Then I remember finally getting used to the idea.  We were having a baby!  And it was going to be a BOY!  We were SO excited.  And then... here comes the news.  UGH... Every time I think about it my heart jumps to my throat.  That feeling... of knowing that there is something wrong with your baby and there is NOTHING you can do about it.  

Sitting there, folding all of those clothes made me think of how much Dryden has been through in his few months here.  He is about to have his FOURTH surgery.  You know what my FIRST surgery was?  Having Dryden.  Yeah.  I've never had another!!!

All of my friends are having babies.  I swear - it comes in waves.  And for the first time, I feel a little self pity.  Why were we handed this card?!  Why does MY son have to have all these crazy surgeries?! Now, don't get me wrong, I don't want any of my friends' babies to have any problems.  I'm not wishing this on anyone else.  I just don't think I'm prepared for this road.  Still.  How do you prepare for something like this anyways though?  

2/12/2012 Mardi Gras Night

Dryden is SO happy it's hard sometimes to even remember that there is a problem lurking under all of that chubbiness.  He just takes every day and rolls with it.  So what if they want him to roll over and crawl.  He will do it when he is good and ready.  They told us that they were concerned because he wasn't reaching for anything... the very next week in therapy, he was like FINE... here... I'll reach.   Unstoppable.  Me... not so much.  

I think of all of the things we have to do and look out for and how used to the whole process we are.  Tina for example.  She has never even flinched when I said, Tina, I think we need to take Bubba to the hospital.  Her response is, no matter what we are doing, ok mom, I'll get the diaper bag ready.  She's 9. She takes it better than me!!  We are cathing him every 4 hours now... and she has never really questioned it.  She asked one time and I told her we had to help him pee pee and that was it.  From them on she is by my side to help.  I guess it really has just become our way of life, but it doesn't make it any easier.  

I'm still working out the kinks in my little mommy heart.  I can't stand thinking about his future and anything that could possibly go wrong.  It drives me insane on a daily basis to know that he will have a slightly harder life than most.  But, as parents, all we want for our kids is the very best, right?  Is it so wrong of me to want the same for my son?  You may say that it's wrong for me to feel this way.  I KNOW my baby is perfect just the way he is, but tell that to the guy behind me in line at the grocery store when he is staring at his scar on his head.  Or the lady checking us out at the restaurant staring at the "train tracks" on his back.  Don't tell me you wouldn't get a little upset deep down inside.  They don't know him.  They don't know how much he has been through.  

Then he smiles at them... and they forget it all.  I can't tell you how many times I've heard, Oh my GOD, he is such a HAPPY baby."  All I can say is, you have no idea.  He wakes up smiling.  He is just SO happy to be here.  

I have friends who have lost their babies and it really puts into perspective how lucky I am to even have time to spend with my little man.  It makes everything ok again.  I'm not ok with the fact that bad things are going to happen... but in a way, maybe I am.  At least he is here for them to happen.  And in the end... I know he is STILL going to be the happiest baby I've ever known.