This post is part of the Epilepsy Blog Relay™. Follow along all month!
When I was pregnant with Colleen, I dreamed of the things that were to come. But, having guilt over family time — especially guilt over Thanksgiving, Christmas, and birthday’s — was not part of the dream. Having a child with cerebral palsy and epilepsy has been a ‘learn-as-I-go’ experience, and I’ve really had to decide what is most important. To me, that is sticking to Colleen’s schedule, no matter what.
On Running Late
Things run late. Events happen during nap time. It’s important to plan ahead for events, and to make sure I bring medications just in case. But it’s also so important you talk with your families, so that they understand. When I grew up, I didn’t know anyone with epilepsy. My daughter was the first. With that, there was a learning curve not only for us, but for the understanding of others.
On doing my best
When I say I can’t stay late, or that time doesn’t work, please don’t take it personally. I am trying my best. I want Colleen to learn and have fun, and to be a part of activities. But, I also know how delicate the balancing act can be, and I am not willing to put her health and well-being in jeopardy. It is my only hope that family and friends will be understanding — and most are. But, it sometimes may take a good heart-to-heart. I would give anything in the world for Colleen to not have to struggle with epilepsy, so knowing that I can do things to make sure she stays healthy by sticking to her routine is the most important.
Just know, a little heart-to-heart can go a long way to give others a chance to better understand.
NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.
CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.”