I received some wonderful feedback from my guest blog on Momversation.com, so I thought I would post the link, hoping all of you get a chance to read it: http://www.momversation.com/blog/coping-when-you-have-disease-your-child-healthy
It’s interesting to hear how those of us who live with Epilepsy, or those who care for someone living with Epilepsy view parenthood. My daughter is 4 1/2 years old now, in Pre-Kindergarten five mornings a week, swimming class on Mondays, gymnastics class on Thursdays…and as active as ever with play dates, birthday parties and other social outings.
I look at life with a child as an incredible gift, but yes…as someone with this neurological disease, it’s an amazing challenge, and I’m the first to admit it. I was diagnosed with Epilepsy in my early 30′s after a bizarre illness, so I didn’t have the time, or the years behind me, to think about how this would affect my parenting abilities. Admittedly, I also never gave much thought to how my Epilepsy would affect her life. Now, I do.
I’m fortunate, in that Hayden is healthy. But as the months go by, I can see more and more how my illness affects her. Still, I don’t think this is all negative. My Epilepsy has made us, the three of us, so much stronger and it’s made my young daughter so wise and resilient. This is a child who has watched her mother endure brain surgeries. She understands more about Epilepsy and seizures than most of the people in my life (aside from my husband, of course), and I believe this understanding will make her an incredible advocate.
Those of us with Epilepsywho are lucky enough to be parents shouldn’t pity our children for having to live this way. It’s a given, our disease will have a profound effect on them. If you don’t drive, you’ll have to make arrangements to get them to their activities, you might have episodes that affect your daily life with them because of the aftermath of a seizure, and simply…they will have many questions. But you can provide them with the answers, and you can engage your doctors as well. Hayden loves visiting my neurologist with me because he lets her ‘help’ him adjust my Vagus Nerve Stimulator (VNS)! She stands with him while he puts the computer to the device in my chest, and watches the lights and the numbers on the screen.
Pity and sorrow won’t accomplish much for the Epilepsy community. We as parents with Epilepsy must remain strong and teach our children what they must know about the disease.