Last March when we were in the hospital several doctors indicated to us that we needed to prepare ourselves, because his condition was declining and we were nearing "the end." (GULP). But God has other plans for our little miracle. God knows what his days are numbered - because medicine cannot fathom the powers of prayer and healing beyond their comprehension. But here we are, celebrating 8 beautiful years God has given us with our son.
Birthdays are always bittersweet - because it's cause for celebration, and at the same time pause for reflection as his time on earth we know will be running out. We might be one of the lucky ones who makes it into their teenage years, but our realistic expectations are different than that. No matter the time we get with him, another week, another year - IT WILL NEVER BE ENOUGH. His body has been working so hard for so long, eventually it will tire out and come to rest. BUT TODAY WE CELEBRATE!!
He's overcome so much. When he was about 2, before we were diagnosed with Leigh's - given his condition, the doctor's claimed even then he was a miracle. They said he shouldn't have been able to be conceived. He should have passed in utero. He should have been stillborn. And then there are those times in the hospital when he was very ill, that they just didn't think he would make it. And then the death sentence that is Leigh's Disease.
But my son is born of WARRIOR DNA. HIs grandmother Susan shouldn't have been born or made it past her complete blood transfusion as a newborn, and she's overcome multiple health scares and challenges that threatened her life. His aunt Shala has overcome multiple battles with cancer and other numerous scary health battles that threaten her life. And his mom - well, I may have had some health issues, but nothing life-threatening - those who know me would say I have an intimidating game face, that I am fiercely loyal, and that I will pick up my sword in their battles to fight with them and protect them. And so we will celebrate our WARRIOR DNA!!
Next weekend we will celebrate his birthday (belated) with a Ninja WARRIOR party! It is the spirit of my son that we will celebrate even though his body will only allow him to watch from the sidelines. I've posted some pictures below, just a quick snapshot of his journey and ours - thanks for all your support and prayers, because we could not do this alone. Thanks for checking in on us and loving us from near and far.
From our days in the NICU
First set of pics at 2months old
18 months
Age TWO
Age THREE epilepsy walk birthday party and Easter
AGE FOUR - epilepsy walk birthday party
AGE FIVE
AGE SIX - at his splash party
AGE SEVEN - from the glow party
Eight year birthday party pictures to be posted in MAY:-)
