epilepsy dad child routine hospital

Things No Child Should Get Used To

A few weeks ago, we went to the children’s hospital for an appointment. We walked through the large, automatic doors and up to reception where my son said hello to Mary (they’re on a first-name basis), who commented that she liked his red hair. Without needing to ask, she pulled our family up from memory on the computer and printed our visitor badges.

Check-in completed, my son led us up the main staircase to the second floor. At the top of the stairs, he turned left and headed down the long hallway towards neurology. He knows his way around the hospital and which building to go to for neurology, or speech, or another test. As I followed him down the hall, it made me sad to realize how well my son knows his way around that place. A child should know his way around a toy store, not a hospital.

As we turned the corner, we passed phlebotomy. There were nervous parents and children in the waiting room, and seeing them sitting there made me think of the times we were in those chairs. The first few times, we were nervous, too, but after too many visits, we got used to it. Now, my son likes to talk to the phlebotomist as she prepares the needles. He politely says “No, thanks” after she invites him to look away, and he watches as the needle pierces his skin. “I never cry”, he says, which is almost true in the hundreds of times he has been pricked and pierced. “You should come here more often to show our other patients how to do it,” we’ve heard more than once. “Ok, ” my son replied, “I’m really good at it.” As I remembered him saying that, I felt sad. That’s not something a child should be good at.

He knows the routine of the physical exam, not because he has had years of exams under his belt, but because he has had so many in the short time he’s had epilepsy. These doctor visits, the trips to one of his therapists, the emergency room visits, they’re part of his routine, those things he’s done so many times now that he just does them because, well, that’s what he does. All these things are now just part of our lives, are part of his life, like eating, and breathing, and going to the park. He wakes up and takes a handful of pills, and another handful at night, without question, because that is what he has to do. He doesn’t get to eat the food that his friends do, and he can’t just have a snack, it has to be weighed and measured because that’s how it is and he’s used to it. He doesn’t look at a restaurant menu because he knows he can’t order from it, and he’s used to that, too.

He’s getting used to having seizures. He’s crying less after he has one in the middle of the night and more regularly just putting himself back to sleep. If he forgets to put on a pull-up and needs to change, I’ll often catch him on the floor halfway through the process by the time I get to his room. He’s getting more aware of his seizures, too. He had one on the basketball court the other day. When I asked him if he was okay and if he knew what happened, he replied, “I had a seizure, but I’m ok.” It rolled off his tongue so casually it was as if he was describing a shot that he missed or if he had tripped on a rock and fell.

On one hand, I’m grateful that he has accepted these restrictions and these changes in his life so easily. I am not sure that I have the strength to constantly explain to him why he has to do these things when I am still struggling with my own questions. Why is this happening to him? Was it something that came from me? Is this our lives forever?

On the other hand, if I think about the things that he has gotten used to, it breaks my heart. This condition has taken away too many things from the one person who I desperately wanted to open the world for, and I’m having a hard time resolving that discrepancy.

I try to think about the positives in this situation, but most of the time I just see a little boy who has gotten used to too many things that he shouldn’t have had to.

 


Also published on Medium.

11 thoughts on “Things No Child Should Get Used To”

  1. He is amazing in so many ways. And that comes from his parents, who also are amazing. Something great and special will come from this, I know that in my heart. Hugs.

  2. Unfortunately I know the feelings you describe my son is 3 with severe epilepsy and has had it since he was 10 months old he has had numerous blood tests and he sits there perfectly still watching the nurses do it he also doesn’t flinch during ecg or eeg. When hes in hospital he knows all of the nurses as we are there so often. It’s heart breaking to think of all the things epilepsy has taken away from him including his speech and mobility (he is limited in both of these due to his seizures) no child should get used to countless meds, needles, tests, appointments but they do as it becomes the norm.

    1. Thank you for sharing your experience, Katherine. It’s tricky because I’m grateful that stuff exists to try to help and manage things. Even though my son’s seizures are still uncontrolled, I know how much worse things would be without access to the medicine and the people in the hospital. But I’d certainly rather not have him go through it at all. My thoughts are with you and your son. I hope for all these kids that they find a way to replace those needles and tests with cures and smiles. ~Dave

  3. He is taking his cue from you, that matter-of-factness. Even though every time is a hidden gutpunch to you, he doesn’t know that. You are doing something right. My daughter is 27 now, was diagnosed at age 8. So much of what we do as parents in raising a child with chronic illness, this new normal, just seems wrong, abnormal, but necessary for meeting the needs of our children. Your attitude will bear fruit, for better or worse, a few years down the road. You have an awesome little guy, and he sounds to have an awesome dad.

    1. Thank you for the kind words and the wisdom, Babs. I think you’re right, it just that “down the road” seems an eternity away. But all I can do is try to make those days count. ~Dave

      1. Yes, it does seem an eternity away. It is hard not to ‘borrow worry’ about the future. The what-ifs come hard and fast some nights. But, you can’t imagine what a fabulous person he will be in 10 years, no matter what happens. Hard in the moment of now, though.

  4. Yes, it does seem an eternity away. It is hard not to ‘borrow worry’ about the future. The what-ifs come hard and fast some nights. But, you can’t imagine what a fabulous person he will be in 10 years, no matter what happens. Hard in the moment of now, though.

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