After our first week of seizures I was staying up almost all night every night to watch Hewitt. We had moved him into our bedroom and had a bed for him right next to ours. Throughout the night I would lay on my side and just watch him sleep. I couldn't turn over, it was wierd. We didn't know what to expect and I had been reading way too much online. I had read about SUDEP - sudden unexplained death in epileptic people. When I did fall asleep I would wake up in terror that I had missed something or that I might find brain dead from seizing too long. These nights were so hard, but I had this adrenaline that I'd never had before and sleeping did not seem worth losing my child's life over.
Every night before we went to sleep Hayden would pray and ask God to give us ears to hear. Every night I let him pray and I listened and echoed the prayer in my own mind, all the while struggling with something. Finally, after about a week I was exhausted. I laid in bed one night watching him and I couldn't stop crying. I had a conversation with God that I don't think I will ever forget. I asked Him to give me ears to hear if something was happening. His response was "What if I don't?" I wasn't expecting that response, but had been avoiding Him since it all begun because I knew it meant dealing with some hard things. He asked me again. "What if I don't? Does that change who I am? Does it change what you will think of me, or if you believe in me? " and then He said, ever so gently, "Colleen, trust me." Of all of the things in that phrase, what I heard was Him saying my name. At that moment I was so comforted by the fact that I believe in a God that calls me by my name. He not only knows my name, but He calls me by it. He knows my hurt, He lost a Son. And, here I was only living in fear of losing one. I finally let myself walk through my worst case scenario: Hewitt dying. I had to come to realize that Hewitt would be with God. I had to let myself just accept the idea of letting him go to be with God. I had to accept that God loves this child more than I do and that ultimately Hewitt would be much happier in heaven than he will ever be on earth. So, I did it. I let him go, I wept for a long time and then I kept this conversation with God to myself for a while. It felt so sacred, so special I almost didn't want to say it out loud. Eventually though He prompted me to share. First with Hayden, and then with others. A few weeks later I had to walk through a similar situation with another aspect of Hewitt's life. I will post about that later. But, I just want to say this is quite the process of refinement. I thought I had to let my kids go many times before. The first time you leave them with a babysitter, the first time we went on an overnight date, a weekend away, etc...those experiences were all little baby steps to this one big act of letting go. I don't think this will be the last time.