As I write this, it is with great trepidation. Colleen hasn’t eaten in five days, and I am terribly reminded about how easily she is set back when she is ill. When I try to give her seizure medication, and she isn’t able to keep it down, I’m paralyzed with the fear that this will be the instance that triggers her seizures again. But, after five days, though she isn’t better, she is still seizure-free. There are moments of happiness in between the cuddles, and I have to take a moment and be thankful that despite her current health situation, she is happy, well and overall, thriving.
There is no doubt the pandemic was a massive challenge. I started working from home mid-March 2020, and my daughter went fully remote not long after. It felt like I was failing my daughter. I wasn’t able to do my work, get everything done, and still be able to get my daughter’s school work done–I felt terrible. But still, in between all that, teachers and therapists reached out and we were still able to get her some form of therapy. Best of all, she was still happy and healthy.
Lonliness and COVID-19
During the pandemic, we essentially lived in a bubble. I felt utterly alone, but after everything that happened with Colleen when she was born, I wasn’t willing to put her at any sort of risk, in fear that any sickness would trigger her seizures, and she would never get back to the point she was. She was having such an excellent year in school before everything happened. And it was lonely too. Though Colleen is non-verbal, I could tell she missed her friends. And I missed having contact.
It is through all this that I realize we are much stronger together. It’s extremely easy to feel overwhelmed not only with what is going on in the world, but also in dealing with your child’s health. It can be lonely and very isolating at times. But, if you look around and begin to reach out, you will soon find people who are willing to stand with you and be there for you, and help you with your struggles. People who know exactly what you’re going through, and ways to try to help. If you’re home, trying to care and protect your epilepsy warrior, reach out to friends. Join a support group. I’m in quite a few! Reach out to your child’s teacher. It is the most heart-warming thing when I pick up Colleen from school, and see a piece of artwork or a note from one of her friends.
While we wait for a cure
We all will look forward to the day when there is a cure for epilepsy. But for now, try to take a moment to be thankful every so often if you can.
CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.”