Monday, April 25, 2016

Thirteen Years

Thirteen years ago today we were hovering over our 8 year old daughter's bed, in the PICU at Oregon Health Sciences University Hospital, wondering if she would live through the incessant seizures she'd begun experiencing the day before. She was wearing a diaper because she'd wet herself with each tonic clonic seizure, and in her confusion Rachel kept tearing the diapers off, and asking where her underwear were. We kept explaining, but she just couldn't process anything that was happening.

Rachel would stay in PICU for two days, while doctors and nurses came and went, doing tests, taking blood, changing medications, doing whatever they could to not only make the seizures stop, but try to figure out what was causing them in the first place. We never did get an answer to the cause, and to this day have no idea why our precious child suddenly started having seizures.

Once the seizure frequency had slowed to the point that the doctors felt she wasn't in imminent danger of injury or death, Rachel was moved to a private room in the children's hospital next door, and we would be there for 7 more days. Rachel was given at least 3 seizure drugs while in the hospital, in addition to sedatives. Depakote caused psychosis, and made her see things that weren't there, and believe that her room had a good side and a bad side, and she would panic if anybody stepped into the bad side. One entire afternoon she said only "I love you" to everyone she saw.

I've never cried so much, or been so scared, at any other time in my life.

Once we had two seizure free days behind us, the doctor wrote us a bunch of prescriptions, gave us some information printouts, and sent us home with a child we felt like we didn't know anymore. I could write a book about everything that's happened since then, and even though they've been absolutely the hardest years of my life, and definitely nothing I would ever have imagined, we have survived, my marriage is still intact, and Rachel continues to persevere.

The fact that my child has to live with epilepsy absolutely pisses me off. I want to be all noble, and talk about how this has been a blessing in its own way, but it's not. My little family has been pushed to its limits, we've all been robbed of opportunities and options we would have had otherwise, and sometimes I just need to vent about the unfairness of it all. No, life is not fair. I've always known that. I was certainly not raised with any other expectation. Still, my sweet, sassy, bright as lightning 8 year old did nothing to deserve the 13 years of struggle, the thousands of seizures, the wagon load of drugs, the anxiety and depression, and the isolation that came with this condition.

At age 21, Rachel is still working to catch up with her peers. She'll probably never drive, or live alone. She can't go swimming without someone being there, and we are cautious about her even taking a bath. She's just now really beginning to feel confident about doing things on her own, away from home. We plan outings so that she can practice her skills, and push her comfort limits. Having Stewart by her side has given Rachel more confidence, but she still likes knowing that one of us isn't too far away.

Most recently, we've been able to reduce one of her prescription medications, with no increase in seizure activity, and she's even been able to better cope with the seizures she does have. Rachel hasn't had a full-blown anxiety meltdown in weeks, and though we know that she's not cured of them, we do feel better knowing that she's making progress. We credit her use of two different sublingual cannabis tinctures for her most recent progress, and we are so grateful to live in a state in which we have this option legally.

Thirteen years. I am grateful beyond words that we still have Rachel with us, that the seizures haven't taken her, but we are fully aware that each seizure she experiences has the potential to end her life. Many doctors still don't tell their patients about the risk of SUDEP, which I find unconscionable. Forewarned is forearmed. I might not be able to keep the seizure from happening, but I can take measures to increase her chances of surviving it if I know what the real risks are.

Even on my worst days, I can't help but be hopeful. I can't help but be impressed by Rachel's positive attitude, and willingness to keep putting one foot in front of the other, never letting us see it if she's having doubts of her own. She sees a really good psychiatrist, who is helping immensely, and we are doing what we can to support Rachel's efforts to mature and take control of her own life.

Thirteen years sometimes feels like a hundred, and yet it went by in the blink of an eye, with vague, hazy memories of doctor visits, medication changes, hours spent on the phone with insurance companies, pharmacies, and physicians. A kaleidoscope of images and experiences so vast that I can't imagine trying to bring order to it all.

There are so many things I wish I had understood better at the very beginning; that I hadn't been so shell-shocked and consumed with Rachel's daily care that I could have seen more clearly, in time to make a difference in her life today. Woulda, coulda, shoulda, yadayadayada. When we know better, we do better; I know that's true. I try to remember that I'm doing the best I can with what I've got, and I am grateful for all the people in our lives who support us every day. We have an amazing support system, and I know what a gift that is. I'd just love to be able to take our lives for granted, just one more time; to be able to assume that everything will be okay, and the universe is unfolding as it should.