For the first few years of his life, Hunter would wake up once or twice a night almost every night. Sometimes, we could get him to go back to sleep by snuggling him and giving him a bottle. Other times, he would just fuss and be cranky and would keep us up for a couple of hours. Late one Christmas night, less than two months before his 3rd birthday, I was overcome with emotion and a strong sadness over Hunter’s condition. The feeling was so strong that it brought me to uncontrollable tears, kept me awake, and ultimately lead me to write the following.
It’s 11:23 PM on Christmas night, and I’ve been weeping for the past hour or so. I can’t remember the last time I cried, let alone for this long or uncontrollably. I just had one of those moments where everything just sort of hits you.
Hunter’s almost 3 years old now. You’d think I’d have accepted reality. I feel like I have accepted it, but that doesn’t make it any less sad to me.
I just want him to be normal. I just want him to be able to talk to me, to run around, to participate in life. I want him to talk. I want him to stop crying and just tell me what he needs.
I want him to play with Mason. We were supposed to have two twins running around and rough-housing and getting into trouble together. Instead, he’s stuck needing us to move him or let him watch TV because he can’t do anything without us but he can’t do anything with us.
Yes, I’m having a pity party, because it does make life harder on us. But that’s just a part of it. I really am sad because I want so badly for him to be able to do the things that everyone else can do.
I’m thankful that he’s healthy. It could always be worse, as Esther and I constantly remind ourselves. He could have life-threatening disorders instead of being just mentally and physically limited. At least he’s alive and well.
Is he always going to wake up every night for the rest of his life? What will we do when he’s too big to rock to sleep? When he’s too big to carry to bed?
I love him so much. I love his soft cheek next to mine. I love to hug and kiss him. I wish so much that he could hug and kiss me back. I know he loves us back. I can see it in his eyes and his smile and his laugh, and the way he cries when I leave the room. I just wish he could say it, like I say it to him.
I know I’m so selfish. I know I should be grateful, but I just want him to be normal. Sometimes it just feels like to much to bear. Why out of everybody did God have to let this happen to Hunter? This is one of those “other people” things, not something that happens to MY son!
Sometimes I get mad, but more often I just get sad or frustrated, and most often I just deal with it, because it just is what it is and I know that no amount of wishing for what could have been will change what is. But I think it’s okay to have these moments where I just acknowledge all those pent-up feelings. If I have to deal with reality, then the reality is that it’s a terrible thing that I would change in a heartbeat if I could.
So that’s what I felt, and that’s what I wrote. Frankly, I consider myself a generally positive person, so it’s almost embarrassing to reveal this very despondent part of my life. Frankly, I think a large factor was that it was late and I was exhausted. Nonetheless, I think it’s healthy to have an outlet for those sorts of thing.
Fortunately, the story does not end here. As I mentioned, Hunter was almost 3. Once he turned 3, he was eligible to attend an amazing special needs preschool. That school gave him the constant activity and therapy that my wife and I, with a job, another son, and a baby on the way, did not have the time to provide on our own. As a result, Hunter has slept much better through the nights because he gets out much more energy during the days. This has been a huge factor in improving the quality of life for our family.
Shortly after, Hunter also began having seizures, but that is, of course, a whole other story in itself.
As I reflect back on these more difficult times, it makes me all the more thankful to be where I am now. There were times when I really didn’t see much hope or chance of improvement in the future. But things did get better. We still had more rough patches, but things have greatly improved and we’re in a pretty good place now.
Hunter still wakes up in the middle of the night sometimes, but it is the exception now. I still have moments where I wish for more for him, but those moments are fewer, and more wishful than despondent. As I mentioned in my last post, God has definitely brought us through these difficulties, and I feel like I’ve definitely grown through this experience, but I’ll share more about that soon.