Thursday, March 20, 2014

365 Reasons to Celebrate

Today marks an anniversary we have never been able to celebrate before... 365 days without a hospital visit!! We came close a few times, but we have made it... FINALLY!

In case you are wondering why this is such a big deal, I'll remind you that he will be 8 years old next month. 8 years and had never gone a full year without an admit to the hospital. And I'll also jog your memory... that 4 or more doctors at that time were telling us our warrior was in a state of decline. It's one thing for one doctor to remind you of your official diagnosis and that your son is terminal, but it's quite another to have SEVERAL tell you that your son is nearing the end. See that post here:

But nobody puts my baby in a corner. God has had another plan. My child is a warrior, and he is determined to write his own story in the medical journals. We do have days where we wonder if his time is coming, you can't live like we do every day and not have those thoughts handily waiting in the dark corners of your mind, just lurking around the corner waiting for an opportunity to pop out at you. If you need perspective on what a typical day can look like for us, you can see our daily battle here:

So after 365 days of continuous relative health and freedom, I feel like dancing. I feel like I've had moments today I could have leaped off bridge or jumped over a train my adrenaline has kicked in so much in my excitement. I just want to shout it from the mountain tops.

We had to make tough decisions this past year to get here. No trip home to KS/MO for the holidays, keeping him out of daycare and in his home environment, and reducing his therapy schedule. Each of these was a difficult decision, but one that has paid off in dividends for our little man. We get the pleasure of enjoying him for a little longer, loving this little angel for just a little more, running my hands through his curly hair a few more hundred times, getting him to sing to me a few hundred times more. And we don't take a day of it for granted. You see, keeping him home has had it's own pay-offs too. Now that we are mostly staffed each day of the week, and several evenings a week - Braden will sing to me in less than 30 seconds now, and it used to take him a few minutes to warm up to me before he would sing. Now, he knows in a few short moments that I am not there to "mess with him", bathe him, change his clothes, do oral care, handle breathing treatments and cough assist - I am just there to be his mom and to love on him... AND I THINK HE KNOWS IT!!! One of his nurses lamented the other day that Braden wasn't singing to her that day, but as soon as I came in and started loving on him he started "talking" away... and she was jealous.

You know our perspective is a bit different than most of the planet. Most people think about what they WANT to accomplish in 365 days. I'll proudly wear the badge of my son who DIDN'T accomplish something. I'm glad we don't know any of the current ER staff at OLOL Children's Hospital, with the exception of a few. In this case, we are HAPPY to be unknown.

I am so proud to be the momma of this warrior. This year we will celebrate his 8th (gasp) birthday with a NINJA WARRIOR party. He is my hero, he continues to show his worth in this battle of life and we will cherish the moments we continue to be blessed with.
Judges 6:12 "The Lord is with you, mighty warrior".

Thanks for checking in on us. We love your support, your kind words and your continued prayers. They are all invaluable to us!!
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-The Wilson family