I was tuned in to a new blog in the past few weeks. It's not a blog that's "fun" to read, in fact, it's HARD. THe blog is of a mom and her son, a little boy with severe EB, which is a skin condition where any friction or pressure on the skin leaves large sores.
Little Tripp is just a few months older than our 2 year old, Lynae. A beautiful little boy with a smile that showed in his entire being.
And yet his body was always covered in bandages, his hands missing fingernails, his skin just peeling away.
This past week, Tripp went Home to Heaven! A day to celebrate, for sure, because he is no longer suffering in pain, the blindness that was caused from his condition over time, and the swelling that had overtaken his little insides...
This little guy is one of those babies where you say "thank God he is free from the suffering," and yet we wonder why God allowed it all in the first place.
Truly, a life like his, with SEVERE EB (there are lesser extents of EB as well where people live long and fulfilling lives with much fewer complications, though always a painful disease), is what I picture when people talk about kids with Down syndrome "suffering through life." Our kids don't suffer, but this little guy SURE did.
But then, I think... Did that make his life less worthwhile?
Not for a minute.
If you have a chance to look, go to his blog (posted below) and check out the 'video' tab. Click on each of the top two videos. He's a happy, playful, demanding, sweet 2 year old little boy!! And he has some great rhythm!! :). Those videos, if you couldn't see the scabs and sores, are the picture of absolute happiness! And for him, DESPITE the scabs and sores... he is delighted!
No, he didn't live a long life, and yes, there's no question that he suffered. But really, is there any reason that even a life of suffering is not a "worthwhile life??"
Our continued prayers go out to the entire family as they grieve the loss of little Tripp, even as they rejoice at his Homecoming. He was his momma's ENTIRE life.. her every moment was devoted to him, quite literally, and I imagine those empty spaces are going to be very difficult for her. Especially in these early days without him to fill her hours...