Today I’m struggling with all the unknowns of the future. Most days I do a really good job of staying in the present, enjoying today, recognizing the grace and blessings of the past and believing our future is completely in God’s hands. Most days the future is something I don’t have to worry about because He has proven from past experience that I don’t need to spend my time worrying about what may or may not come. But tonight my heart feels very heavy, the tears are on the verge of falling, I can hear myself sighing frequently and my mind just refuses to shut off.
Today as I drove down Old Cheney on my way home with my oldest in the front seat next to me and the youngest behind him, fear struck me. Ryan was having constant seizures and Brad turned around and said in a very agitated voice “knock it off Ryan!”. I calmly explained he isn’t seizing on purpose and Brad said “I know, mom, I just hate these stupid seizures!”. It hit me, again, how hard this is for the kids. They had so much hope Ryan’s surgeries 19 months ago were going to stop his seizures – we all did – and that failed. Then we put lots of hope in the vagus nerve surgery and that device has also failed. Then we put hope in the corpus callosotomy surgery in February and ended up with a month long hospitalization and new stomach problems. And now the seizures are back with a vengeance. The honeymoon period from adding Depakote back to his long list of meds is now over. And while the last surgery did keep his seizures from spreading from one side of the brain to the other, he is back to having clusters of small seizures almost on an hourly basis. He’s also been sleeping more, seems less active and more content to just sit and do nothing. Don’t get me wrong, he is still happy and content. It’s just been a struggle to realize everything we can do for him has already been done. It’s hard, and I’m not going to lie and say I’m OK with not knowing what the future holds.
We’ve never figured out what is wrong with him, why he is as he is, what awful disease or genetic disorder is ravaging his sweet little body. And maybe, probably, we’ll never know. But I’m not OK with that. I want a name, a visible target to throw darts at, something to blame for stealing my son’s health. Most days I seem to do OK not knowing what tomorrow will bring but these past few days as I’ve watched the seizures relentlessly attack my sweet boy’s little body, it’s really bothered me. I am very much aware that God has all of our tomorrows in His very capable hands, and it’s not that I don’t trust His perfect will. But…I’m still human, I still hurt, and I still feel sorrow and fear for what is coming. And I know one of these days the grief won’t be so overwhelming, my heart won’t feel so heavy and my hope won’t seem so fleeting. That day isn’t today.
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. ~ Jeremiah 29:11