It's been a crazy couple of months since I last posted. Crazy and difficult. And good. I haven't posted before now because, honestly, I haven't had the heart to do it. We got some negative news about Levi a couple of months ago that kind of sent me into an emotional whirlwind and I just haven't been able to put it out there in the wide open web. Until now.
To be brief, in a matter of two weeks, he had two tests and several appointments that landed him with a worse developmental diagnosis than before. When he first had the seizures (a year and a half ago), he was assessed as functioning at about 30% behind. We had actually been hoping that he was catching up. Unfortunately, the tests show that he has actually fallen further behind and is now functioning closer to 40% under his age level. We're talking, he may not ever be able to be fully independent as an adult, behind. Even now, I can't come up with the words to describe how this impacted us.
The first couple of weeks were accompanied by several emotional break downs. At first, I couldn't tell anyone. I couldn't say it out loud. I didn't want it to be real. But, when I was finally able to share it, we found what an amazing support system we have. A few people came and prayed with us and each of us took a day of the week to fast for my boy. I don't know if you believe in prayer. I do. Along with a new listening therapy, that week started a burst of language for Levi. Since then, I would say he has almost doubled his vocabulary! He still has some communication blocks and many other difficulties, BUT, we're watching him progress quickly and I am hopeful for good news at his next appointments and with his future testing.
With what I've learned through all of this, I know that there's still a chance that the numbers haven't changed for the better. There have been so many sudden spurts of development and, so far, the numbers have only gone down. But, a good friend reminded me that my hope is not in how my son is performing. Rather, my hope is in Christ. It's easy to lose sight of that, but remembering it has completely changed the way I've been able to look at this situation.
I know that no matter what happens, my hope is found in the One who can use Levi, just as he is, to make a difference or if HE wants, He can change it all in a moment. I don't like the unknown. But rather than focus on what I don't know, I'm going to lean on what I do know - My Faithful Faithful God.
Here is a song that has helped to carry me to that place of trusting in Him without the borders of my own will and desire.