Theo is my favorite topic of conversation. The word that comes up first whenever I talk about him is sweet. He has a gentle, calm nature and the world’s best smile. I could hug him and smother him with kisses all day long. He also has a mischievous glint in his eyes whenever I talk about him, especially if I’m playfully exasperated at his antics. Nothing is of value in my home other than Theo.
I often bring Theo to my yoga classes and he likes to laugh during the class (my yoga friends and I think he’s laughing at us which we all love). My yoga teacher’s son came to one class and she told me after that he reported to a friend that there was a guy in a wheelchair but he was so ‘buff’! We don’t know why Theo is so muscular but he’s freakishly strong and occasionally, household items get broken. Fortunately, we’ve managed to keep the broken bones down to a minimum. I hope and pray it stays that way. Theo loves to play in water, he loves music, and he loves his sisters.
Theo’s LGS journey began when he was 4 months old when he had his first tonic-clonic seizure. We rushed him to the emergency room where they also confirmed that the little ‘crunches’ he had been doing for a month, were actually infantile spasms (IS).
I remember thinking to myself, ‘Epilepsy, he will never drive a car.’ I didn’t even consider the level of seizures that he’d experience.
We all rallied around Theo. His sisters are extremely protective. We didn’t realize at the time how life-changing this would be. We kept thinking things would get better and he’d live a normal life.
Then at the age of 4, Theo was diagnosed with LGS. Theo was having hundreds of seizures a day. In addition to the spasms, he had a lot of atonic and tonic-clonic seizures. It felt never-ending. So, I stopped working to focus on Theo and his sisters.
I wanted Theo to walk so badly. He wasn’t talking yet either, but I felt like walking was the most important goal. Probably because I was carrying him everywhere and he was heavy.
We attempted the ketogenic diet for 2 years but stopped it around 3 ½. I was always looking for something be it traditional medicine, diets, or homeopathy. The internet was becoming my best/worst friend.
Also, Theo wasn’t sleeping at night. This was physically and mentally draining. I became depressed, although I didn’t realize it at the time. And my marriage began to fall apart.
I think that many LGS caregivers would say that we don’t know how we did it, we just did. Where does all of this resilience come from? I suppose that necessity required it. I had no choice. I didn’t want to be miserable so I rejected that feeling as often as possible. I didn’t always succeed, but I got back up every time I was knocked down. I hope I keep doing that. And my strength comes from my love for ALL my children. I want Theo’s future to be bright. I want his sisters to have lives of their own that they don’t have to give up to care for him.
I believe that because of this journey, I’m better at rolling with the unknowns than I’ve ever been and I need to remind myself that somehow things will work out. I remember the darkest period shortly after my marriage ended when I felt like the future was bleak. I don’t often feel that way anymore. I’ve managed to become an optimistic person but also a realist. I know that the changes are going to have to be driven by me, his dad, and his sisters. That burden is always on the family and that is NOT okay. That’s why I’ve chosen to focus on advocacy and telling our story to make a difference. My fellow advocates and I need to build a future for all people with LGS where they are safe, happy, and loved.
“My advice to other caregivers is to keep getting up and doing your best. And, on the days when even that is too hard, be kind and forgiving to yourself. LGS parents are hardest on themselves. Try not to do that. There’s an entire community of LGS caregivers who’ve felt exactly the same way you have so lean on them when you’re falling apart. And then return the favor when they need to lean on you.”
-Written and submitted by: Jennifer, Theo’s Mom
Updated 10/02/24 (KK)