By Tiffany Shedd
Spring has sprung. Flowers are blooming everywhere. The air is filled with the sound of mowers, and, the dreaded pollen. It’s time of new beginnings. But what about those new beginnings you started way back in the dark, cold days of January? Those New Year’s resolutions? How are those going? I, for one, will admit it. We have experienced some setbacks.
In January, we began the slow process of weaning my son off his epilepsy medication. He had been seizure free since October 2013, and his neurologist decided we could try to go off the medicine. We had successfully weaned him off one of his medications earlier in the year, so we were on board. We took his medication down by very small steps and it took two months to get to zero, but by March, he was medication free.
It was a scary time for us as a family. I know I was extra vigilant about watching him for any signs that he may be experiencing any seizure activity. I was excited when we got down to zero and started ticking off days in the no medicine month of March. We got all the way through snowy March,
But April arrived with lots of showers and, unfortunately, a seizure.
He had been a little sick for a week, but he was his usual busy toddler self. We were getting ready to go to our Unit picnic and egg hunt, and he just started acting off. I know that most parents will understand exactly what I mean when I say “off”. I know my son and the tiny intricacies of his behaviors, and they just weren’t quite right that day. My paranoid mommy brain had had a suspicion that he may have a seizure because of his illness, but it hadn’t happened yet, so I tried to just push my fears aside.
We went to the picnic, and as I was putting our dishes on the table, my son and husband went to play. Within 15 minutes, he was losing motor skills, and we were headed to the hospital. On the way to the car, my tiny, precious boy went into a full tonic clonic (formerly known as grand mal) seizure. Selfishly, I am glad I didn’t have to witness it up close. The memories of his previous seizures bring tears to my eyes (I am typing through them now actually). Seeing your child sick is awful. Not being able to help your child is probably the one of the worst things a parent can ever experience.
Thankfully, his seizure was short and there was only one. We got a clean bill of health from the emergency room, and his neurologist was very quick with his response. This was a major setback for us. We had hoped that the seizures wouldn’t return when we went off the medicine.
Even though we felt defeated by this setback, we couldn’t let it shut us down. We have to keep moving forward and making new plans to help our son, just like so many of you who have special needs family members do every day. Setbacks can be extremely hard when you don’t expect them. It would be really easy to rage against everyone and be negative, but what good does that do? I am not saying that I didn’t go in the bathroom and have a good cry, because I did. But then I wiped my eyes and put a smile on my face for my son, who was upset and scared. You have to find something positive to focus on and move forward.
Luckily, we are stationed in an area with an abundance of great medical services, so we are able to receive excellent health care for our son. Our neurologist is actually the head of pediatric neurology at a wonderful hospital. We’ve been working together for the last few weeks to build a new plan to best suit my son’s needs.
Don’t let a setback turn into a roadblock. Figure out a way to get around it. It may not be easy or quick, but it’s the only option. Forward, no matter how you get there - sideways, diagonal, up and over - is the only option.
