Robbie had his first seizure at 6 months old. It was a tonic-clonic that lasted an hour. At 9 months old, he started having infantile spasms daily. We never truly got control of his epilepsy after that.
The early days after diagnosis were filled with grief. I wanted so badly to “fix this” for my son. I truly thought if we couldn’t stop his seizures he couldn’t have a good life. It was a very black-and-white mindset and since then I’ve learned to find the color, so to say, in our journey.
Something that helped me was finding support groups. Being able to bounce ideas off other LGS families and get guidance is so helpful. Not only that, but being surrounded by people who truly “get it” and understand our life has been so healing.
My best friend of 10 years is a mom that I met in an online infantile spasms support group. We messaged daily and went through this journey together. Though we started off living across the country from one another, we both landed in Colorado years later for better medical care for our kids.
While seizure control is very important, I wish more families and doctors also considered quality of life. I’ll give an example. Last year my son had the best control he has had in years, but it came with him falling asleep all day, not laughing anymore and being very zoned out from heavy medications. His doctor and our family decided that wasn’t a good balance for him and his quality of life. He is thriving again! Yes, he is having 1-3 seizures a day, but he is also learning to walk and laughing and full of joy. That matters!
I want Robbie to experience everything the world has to offer. We will continue to adapt and overcome and give him every experience we can and hopefully through his social media inspire others to do the same. It’s the reason we started our social media, Accessible Adventures. I wanted to be the voice I needed in the beginning of our journey. I wanted to show other parents that even if their child never got seizure control, even if their child used a wheelchair, they could still have a beautiful adventure filled life.
If you are new to LGS diagnosis, take a deep breath and try to shift your goals. Some children might gain seizure freedom, but if yours doesn’t that doesn’t mean they can’t have a beautiful life worth living. Seizures are scary, but don’t let that fear hold you back from truly living. Always remember disabled kids and LGS kids are just kids that want to have fun and be included. Find the ways to adapt to give them a childhood with memories outside of hospitals and therapy centers. If you don’t know how, join a support group and ask. After all, we are stronger together.
-Written and submitted by: Robbie’s Mom, Kristy
Updated 10/17/24 (KK)