Do you see this boy? This smile? Those bright eyes? Today is a big day for him…today he is…
Can you believe it? It’s been two years since I’ve watched his eyes go up to the right and his eyebrows start to twitch. Two years since his started smacking his lips and his hands start shaking. Two years since I’ve had to sit there holding my baby boy, fighting back the tears, praying for God to make it stop while telling him over and over “Mom is right here. You are okay!” It’s been two years since I’ve felt that absolutely helpless feeling.
I truly thing that PTSD from seizures is a real thing. That awful feeling you get in the pit of your stomach when the school nurses number shows up on your phone!! Or when you look at your child and they are staring into space but that just happens to be looking in the same direction as when their seizures start and your heart skips a beat. (By the way he likes to do that and ignore me for a sec then smile and look at me like “Gotcha!” Silly kid!)
It’s been almost three and a half years since Grant’s first seizure when I got that awful call from school that changed our lives. The feeling I felt when she said the words “Grant is having a seizure” will never go away! Ever!! I can still tell you exactly what I was doing and every moment from then until the hospital. It’s all burned into my brain. And I can tell you the date of every seizure after that and what caused it and how it looked and what happened. It’s all something I will never forget…but also something I wish I never had to.
When your child has a seizure, and then more, your life changes…at least mine did. I find myself being so aware of triggers. First one caused by new antibiotics…so now before he takes any medicine that is new to him I research the heck out of it. If it has even the slightest chance of seizures it’s a no go (which is almost everything by the way even Benadryl). Second was caused by motion when jumping on the trampoline…okay so no more fun on trampolines or bouncy houses for Grant. There was two caused by heat…have to keep a very close eye on him when the temp gets hot because I’m not sure what his limit is. I have to worry when driving on hilly roads. I have to worry when he’s rough housing which he loves to do. All of this goes hand in hand with the PTSD I begin feeling when I think about those seizures.
The amazing thing is that Grant knows his limit. If he’s getting too hot and he knows it I just have to ask if he’s okay and he will shake his head yes or no. On the Fourth of July watching the fireworks he knew when it was too much and let me know. That makes me feel so much better but I just always have that fear I will look at him and he will be in the starting stage of a seizure.
Even though that feeling is always there…always on my mind…that fear will never ever go away…and I hate it…I absolutely celebrate days like today. This kind of huge accomplishment that makes me and Grant punch in and high five!
Moral of the story: As a special needs mom, PTSD is real…and life changing…but we can’t forget to celebrate the accomplishments!
Have a blessed day!