Entry Ten- Being Different

“Don’t make him more different than he already is!”

My husband has told me this several times over the last 18 months and it most recently came up again on Canada Day (July 1). Typically on July 1 we go out on our boat to see the fireworks display over Georgian Bay. This year I suggested that maybe my husband should just go with Olivia and I would stay home with Oscar. My husband was confused by this, “Why wouldn’t we take Oscar?” and I of course responded with “Well it is really late and it will mess up his sleeping schedule.” (I think like most parents who have a child with epilepsy you become very protective of their sleep because you know that a lack of sleep can cause problems with seizures.) This is what prompted my husband to say, “Don’t make Oscar more different than he already is!”

I know he is right, but it is so much more difficult to put into practice. Seizures can be triggered by several things (I am certainly not a neurologist nor do I profess to be an expert… just as a mom, but I am sharing what our neurologist told us); an increase in body temperature, sleep deprivation, dehydration, missed medication, and there are others. I am VERY aware of how my son is doing in those catergories listed above daily.

Because of this, I think it is normal as a caregiver to be protective of the triggers listed above in order to reduce the risk of seizures. But, I know that sometimes I can take it too far and this is how my husband balances me out. “Don’t make him more different than he already is!!” meaning don’t “freak out” if he wakes up while we are on the boat and loses an hour of sleep, let him experience the boat ride and the fireworks. Allow him the opportunity to have experiences.

We now have 18months of experience with my son’s epilepsy and have learned that Oscar is not as sensitive to the triggers as maybe some other children are. I am certainly not suggesting that you inappropriately challenge the triggers, all I am trying to say is that we have learned the boundaries that are safe for my son and my husband helps me to allow Oscar to experience things that are appropriate for him within those boundaries.

This doesn’t only pertain to epilepsy. My son also has hearing loss and wears hearing aids. He cannot wear hearing aids in water and for at least 30minutes once he gets out of water so that his ears can dry out. This makes me reluctant to take him swimming or to play in water because I want him hearing properly with his aids so that he can develop his language skills. BUT swimming and playing in water is such a wonderful experience and sensory activity for him. I want him to learn how to swim and to be comfortable in and around water even though it means sacrificing his hearing aid time.

I continue to work on not making my son more different than he needs to be and allowing him to experience things that are appropriate for him. I often tell myself not to let my anxiety get in the way of his development. It is a challenge, but I am very thankful to have my husband who balances me.

Photo taken July 2020

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