It's true. I'm a big old cheater. I, like many others, have been thrown into this horrible world of epilepsy. And I do not have the brains to read all the books or really understand it all. It takes all the energy I have to do what I manage to get done. Thanks to cribbing off other's hard work, I've managed to get Soren where he needs to be.
The main person I've cheated off of is my friend Julie. I've mentioned before that her daughter Camille and my son Soren were put in the same hospital room. And thank goodness they were. Julie has been a wealth of knowledge for me. She reads all the books, she knows all the facts, and she's met all the people. She's met so many kids who have or have had Infantile Spasms that she put together a party for us all to chat. She was the one who found out about another mom, Azita, whose son Clayton had gotten stem cell injections.
This is the next person I've cheated off of. Azita and her husband George had been through a similar hell with there son Clayton as we had been with Soren. Upon meeting them, we decided to get Soren his first stem cell injection, which I'm going to talk about in my next post. But by meeting Azita, I got hooked into an Epilepsy Support Group in Pasadena that she co-founded. That has provided us people who understand what we're going through and lots of great (though often painful) information.
Her fellow co-founder is Jane. I wrote about Jane's daughter Maddy being in the hospital in an earlier post. Maddy is out of the hospital and doing better now that she's off a drug called Keppra. Jane's goal has been to educate others with her experience so that they can make the best choices for their kids.
I could go on and on because everyone I've met on this journey has helped in some way. It's just unfortunate that I've met so many people in the same boat. As my friend Karen, whose son Ari is also struggling with seizures, once said to me, she wished the reason we all met was because our kids all had Athlete's Foot. Unfortunatly, that's not the case.
But I am so thankful that I have found all these people who are so wise and have helped guide me in giving Soren the best he can possibly have. Thanks for letting me cheat off you.