Our First Overnight Stay in the Hospital

Update: Thank you all SO much for the loving and supportive comments for our boy. I was very tired and emotional when writing this post and we appreciate you being here to read it!!

It’s currently 9p and I am trying to keep my eyes open as I sit next to our son, who very much doesn’t have his eyes open and is sound asleep on the 3rd floor of the hospital we’ve been going to for the last year and a half.

I have lost count of just how many times we’ve been to the hospital for Riah. Those are words I never thought I would write when I used to think of our someday kids. I don’t mean to sound like I am pining for your pity, because thankfully, and I truly mean thankfully, all of the visits have been fine and well and we’re handling his epilepsy as best as possible and taking all of the necessary steps so that he hopefully grows out of it in a few years. 

What I mean is, you can never predict what the future holds for you and the ones you love. That’s part of what makes life so exciting (and scary). So I never could have predicted with 100% certainty, especially since he isn’t biologically ours, that our son would have epilepsy. There were certain hereditary signs, but who could know for sure? 

We are spending the night for the first time at the hospital to do a sleep study and see how things are progressing. He is currently hooked up to 38 wires, with tape across his face and in his hair, and a big white bandage all over his head to hold everything in place. He is sleeping under a thin blanket. I let him pick out his favorite stuffed animal and we brought it with us, but our boy was so tired after they hooked him up that he was falling asleep before the doctor was even finished putting the wires on him. 

There was a moment, though, when he was told to sit up so the doctor could patch his head and face with long, brightly-colored wires that looked more like toys than vital instruments to measure one’s sleeping patterns, where he was staring at me with such a longing to lay his head on the pillow; to rest and to fall asleep. I felt my heart twist and turn as I stood watching the doctor we just met lace him up with one toy-like string after another. I felt, as I always do when he is in the hands of doctors and nurses, helpless. I wanted so badly to lay him down and give him the rest he so desperately needs. His eyes were heavy, and my heart was, too.

Riah requires more sleep than our other two children. He always has. His brother and sister are able to function and go all day without a nap (much to our surprise) but Riah is so noticeably out of sorts when he doesn’t take one during the day. His whole vibe is off and he’s much more moody, sensitive, and angry. If you have young kids or have been around them for any amount of time, does this sound familiar? 

I hate that he has to have all of these tests done. I hate that he has to drink medicine twice a day that tastes disgusting. I hate that he is five years old and has already had more lab work done than I have in my entire life. And I hate that we’re not home with his father and his brother and sister, on this cold December night.

But you know what I don’t hate? The chance that he will grow up without his epilepsy getting worse, or better yet, that he might grow up with no epilepsy at all. I also don’t hate that he is so good with needles and pokes, because I have to look away when they do it to him (and to me). I don’t hate that he is so brave and strong when it comes to this stuff, and that the medical staff are always telling him how wonderful he is doing. I don’t hate that he never complains about any of it: he rolls with the punches and keeps going. I don’t hate that everyone we meet with has been extremely nice, sensitive and patient. We were late getting here tonight because of traffic and they kept telling me it was alright. And you know what? I think it will be.

It’s later now, and he’s been asleep for a while. We will get to leave at 4:30a and make the long drive back home to our house with the 100 year old floors and the laundry that needs to be folded on the couch, and the dogs that need to take their medicine twice a day, and the litter box that needs to be changed, and a brother who needs help tying his shoes and a sister who wants to eat only Mac n’ cheese, and a husband who texted me after we got here saying “Everyone misses you,” which put the biggest smile on my face. And as I adjust and try to make this recliner next to his bed more comfortable than it is, I can’t help but feel grateful for our boy and everything that makes him, him. 

And also for the fact that he is sound asleep, finally getting that rest he wanted, and the rest he so desperately needs.