When it is hard to celebrate the wins…

When you have a child who is medically complex, the daily life strain is overwhelming. Therapies are one part, doctors visits are another. Then there’s daily meds, meal planning (not the family meal planning, but planning and prepping meals for your Keto kid) and then the general daily extras that your kid requires.

When you have a seizure kid, like mine, you fight for a way to stop the seizures, meds, doctors visits, Keto meals… and the daily extras… plus seizure trigger avoidances like baths, excitement, pooping, food, temperature changes, full moons, nothing (because sometimes there just is no known trigger). You know they are at risk for SUDEP (sudden unexplained death in epilepsy) so you don’t even take a breather when they nap, because what if…

The wins are the seizure free days. And really, there was a point that we didn’t even celebrate the seizure free days, we just celebrated the days he didn’t lose a lot of blood from smashing his face into the floor/table. Those were winning days. I remember chatting with our pastor one day at Vacation Bible School. He said something about “good days and bad days?”… and at that point there were no good days. Every day was bad. Every day was filled with seizures and blood and bruises.

Currently my son IS having a good streak. He has been visible seizure free for over two months. Considering he was having over 25 visible ones every day? And about 100 non-visible ones every day, we are winning. Our efforts are paying off. But what have I realized in this?

I don’t know who I am anymore. I don’t know how to “mom” in a seizure free world.

Part of it is that my son is wanting more independence, and I want to be able to give it to him. I let him watch tv in a different room than I’m in… and I just wander by every 5-10 minutes to make sure he’s still ok. I have even loaded a whole dishwasher at once without stopping to check on him.

Because of his diagnosis, Dravet Syndrome, there are still issues. He’s not your average kid who just throws seizures into the mix. Medications and brain injuries (from seizures) have delayed his development and speech. He has no sense of fear or danger. None. He still takes lots of efforts even if I’m not having to give him rescue medications to stop the seizures every week.

So here I sit. Torn. I’m a seizure mom, a Dravet mom. But I’m also so many other things that I’ve given up to care for him. Do I try to go back to those things? Hobbies, friends, work… am I even a valuable employee anymore since at any time the Dravet Dragon could come screaming back?

I celebrate the wins for him. And he is definitely worth the celebration… but when you know the celebration can’t last, that there are still so many other daily struggles, it does make it hard to celebrate as much on the inside as you show on the outside.

*This post was originally published on my previous blog: The Mom Strong Life

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