I've had a hard time lately, trying to process some things. The long and short of it is, had Aaron been born today, or even in the last couple of years, his treatment plan would have been very different. What was "not done" at the time, what was "too risky" for children with T18 is becoming standard practice now.
That's hard. Really hard. There are a few doctors doing complicated (and successful!) procedures now that were completely unheard of then. The one he needed was actually pretty simple, but it is not an option now and hasn't been for several years. His health just won't allow it.
Because in spite of all the statistics and odds and medical school training, some of our kids live, and thrive, and love life. He's a pioneer. But like the pioneers, he won't get to enjoy the nice smooth road that will be built alongside the rutted, muddy, bone jarring trail that he traversed.
But that line, "in the midst of affliction" doesn't end there. It goes on, "my table is spread. With blessings unmeasured my cup runneth o'er. With perfume and oil thou anointest my head. Oh what shall I ask of thy providence more?"
And with that gentle slap, or forceful nudge (whichever you choose), I actually struggled at first to find those blessings and perfume and table. But you know what? They're there. And once I started looking, they became obvious, and comforting, and soul reassuring.
I live in a beautiful place. A hike with friends to the poppies that overlook our valley. Family and friends who are there with listening ears and prayers. Grown kids who will drop everything to support family.
A granddaughter is on the way and her anatomy scan looks perfect. A soon to be daughter-in-law who is amazing.
I have a home, a neighborhood, an online medical community with ideas and support and words of wisdom. A friend that goes walking with me (talk about great therapy!). Music, Books to get lost in. My bed. The list goes on and on.
Yes, blessings unmeasured and unmeasurable.
He's nine. Nine years old. 3312 days. 79,488 hours. When you spend 17 weeks praying for just an hour with your child, to receive this much... Well, there really aren't words.
My cup runneth over. And it's a pretty big cup.