Monday, September 18, 2017


Today was David's annual IEP meeting as well as his 3 year eligibility meeting for special education. We've been through 15 IEP meetings for him as of today. There are many people involved in his care at school. It includes teachers, therapists, social workers, and other representatives from both districts (we live in one school district, but David goes to school in a neighboring district). It's a full house.

I don't get too nervous about these meetings anymore. David's needs are being met very well at school. They take very good care of him & I fully trust them to be with him all day, every day. When he's in a good mood, he's described as a "social butterfly". When he's cranky, he's described as "self-injurious" or "cranky-ass" (maybe that last one is only at home-but it would be an accurate measure of demeanor if they DID use that at school some days.) But all in all, I feel 100% confident about the care he receives while he's away from me. They love him. Plain & simple.

But he is going to be 18 soon. In 5 months. That complicates so much. He'll be able to attend high school until he's 21. But 18 is the magic age when he becomes an "adult". We have to go through the process of legal guardianship, trying to get him Medicare and/or Medicaid, finding new doctors to meet his needs since he won't be in the pediatric realm anymore. It's all so much.

I hate it. But I'd do it all over and over again for him. Because it means he's still here. David's life expectancy is "a couple of decades, possibly a little longer". According to several doctors. I know I've said it on here before. But that kind of stuff is HARD to hear at yearly appointments. Especially because we DID almost lose him 9 months ago. I thought I knew him well enough to detect when he's coming down with something. I have almost always been able to catch things before they become out of our control. There's usually some warning signs. But there was NO sign in January. He was fine when he went to bed, and septic and in kidney failure when I went to wake him up the next morning.

And I know I'm not ready. Someone once told me that I should prepare myself for what's probably inevitable. Because it's easier than being hit with tragedy suddenly. And while I totally understand that thought, I don't believe you can prepare. Either way sucks. Is thinking about something that's completely unknown healthier than being hit suddenly with something unexpected? Because I do think about it. Every. Single. Damn. Day. I have anxiety about it. I don't sleep. My mind is always "preparing" for the expected, but the unknown. I'm having anxiety about how my younger child might react to the inevitable when it happens--he got diagnosed with anxiety after the hospitalization in January. I worry about my husband's reaction. He holds it together, but he does it for mine & Kyle's sanity.

And it's so unfair.

But it's also our life. Unfair & messy. Anxious & nervous. Raw & real.
But having a David-filled life is also amazing. He equals love & hugs. Happiness & laughter. Hopes & dreams.

I don't know what our future holds. But I'm going to hold on tight. And when my "couple of decades, possibly a little longer" happens......I will do my best to fill my dreams with my memories. Because good & bad.....I'm making as many of them as I can.


1 comment:

  1. I don't know what those doctors are talking about. Davis's the strongest kid I know. In every way. His mind. His body. That killer personality. David has changed me with that strength of his. Killer awesome. I'm one of those who has fallen head over hills in love with him. Killer smile. Those deep blue eyes. When he grabs me, pulls me down, bumps our heads together, and he smiles. Our souls connect for a second. Yes. Killer.