Someday I’ll be done asking how this happened. Someday I’ll be done asking, “why Anna?”. Someday I’ll finally warm up to the idea that bad things happen to good people. Not today though. Today I’m just pissed off. I’m pissed off that there is absolutely no explanation as to why my daughter’s left temporal lobe has atrophied... why does she have cavernomas in her brain? why is she autistic? I just want to know why my perfectly perfect little girl forgot everything she knew as a toddler.
Anna was the funniest little girl i’d ever met. i know everyone thinks their kid is the funniest kid they’ve ever met but I’m telling you, this kid was a comic genius. She was really bright. One day she brought me a photo album and said, “Hey mom, I got a face book”. So sweet, so imaginative, so ridiculously cute I could have just watched her all day. But then on the day of her second birthday, something took that delightful little girl away from me. In exchange, I got an angry, sad little 2 year old. Still cute, but damn miserable.
Even more devastating than the fact that her emotions were completely out of control, was the fact that she couldn’t remember some of her favorite songs. She no longer seemed to be comfortable with family members. It was sort of like she didn’t know them anymore. She stopped counting. She stopped saying her abc’s. She forgot who she was. She was interrupted.
In place of her usual hobbies, she became obsessed with puzzles. She was suddenly fiercely independent and would spend hours assembling the pieces, taking them apart, and reassembling. She would insist on only wearing pajamas with buttons. She would throw a massive temper tantrum if she got so much as a drop of water on her clothing. As if the tantrum weren’t irritating enough, she’d then strip naked and insist on different clothes. She no longer went to sleep at night. She’d stay up until 3 or 4 crying, screaming really. Some nights the only thing that would calm her was to give her a comb and lie down with her so she could run it through my hair over, and over, and over.
Somewhere after that, I began to notice strange “muscle spasms”. At least that’s what I thought they were. When I’d mention them to doctors and family members, no one seemed terribly concerned. She was diagnosed with pervasive developmental disorder-not otherwise specified. along with pdd-nos, she was also diagnosed with anxiety disorder. Anna didn’t really talk much anymore so it wasn’t until She began being vocal again that I noticed these spasms were interfering with her thought process. something more was going on. She’d come into the room where I was and say, “Mommy, I need you to...” (head goes down, arms go up, a small stumble backwards, head back up, arms go down, a smile in my direction). Then she’d walk away. I’d say, “need me to what, anna? Anna, what do you need?” nothing. She didn’t remember. She was interrupted.
I still didn’t realize she was having seizures. i thought when someone had a seizure, they would drop to the floor and convulse violently for a few minutes. when her psychiatrist caught one of these episodes out of the corner of his eye, he knew immediately what was happening. He set up an appointment for her at Hershey medical center. we were there the next day. she had an mri and eeg which showed atrophy, cavernomas, and seizures with a slow spike wave between.
Since then, Anna has had more eeg’s, more mri’s, 2nd opinions, 3rd opinions, 4th opinions. She’s been on 6 anticonvulsants, 2 extreme epilepsy diets, and several other prescription drugs that are intended to lessen her anxiety and help her fall asleep. Since stopping the Ketogenic diet 4 months ago, she has gained 9lb’s. if you don’t know what 9 lb’s looks like on a 5 year old, imagine a very small person with breasts and cellulite who wears size 8 pants that have to be rolled at the bottom to make them about 10 inches shorter. This is what happens when you put small people on metabolism-altering diets. I suppose i wouldn’t be so irritated about the effects of this had the diet helped even a little. but hey, these are the treatments that we have to pick from in pennsylvania. Tough break, Anna. you were born in the wrong state.
Or maybe, just maybe, she was born in just the right place. And god allowed her to become sick knowing that i’m a strong enough woman to fight this good fight. just strong enough to continuously be told not to bother trying, but to continue to try anyway. hmmm... maybe that’s the answer to all my “why’s”. maybe it’s time to take the anger i feel about all the unanswered questions, and redirect it to the unsympathetic people who are denying my little girl the cannabis medicine she needs to continue in life without being interrupted.