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.

-Kelly

MiyakoCon and Good Days

Big doings in Rachel-world today! A young woman with whom Rach attended middle school decided that she would start up a new anime convention, and today was the day for the first one. We learned about it just this week, and Rachel got very excited, but wasn't sure if she was up to going. She had a couple of seizures this week, and her confidence in her ability to cope had taken a hit.

Yesterday she announced that she really wanted to go, and was super excited, and she was going to just have me drop her and Stewie at the door. Everything went as planned, we made a stop at the ATM, and we arrived at the venue, enjoying the sight of all the young people outside who were posing for pics in their cosplay outfits and colorful wigs.

Rachel only stayed about an hour before calling to let me know she was ready for pickup, and when I arrived I found her deep in conversation with a young man, and they were exchanging Facebook info. Her cheeks were pink, and she had a huge smile on her face. I almost cried with joy. Rachel has so few days that include opportunities to meet new people, and make special connections that when it does happen it's remarkable.

I asked why she didn't stay longer, since it was obvious she was having such a good time, and she said that it was so busy, and bright, and loud, and she had already spend so much money, that she decided to leave while she was still having fun, and not push herself to the point that she panicked and then ruined the entire memory. That made me a little sad, but also very proud of her for being mature enough to recognize her limits, and know when enough is enough.

This has been a good day. :)

Rumination and Medication

On Monday the 15th, Rachel had a regularly scheduled psych appointment, so I had some time alone in the waiting area. After about 30 minutes Rachel brought Stewart out, and asked me to take him out for a break, and then I kept him with me for a few minutes, and we waited together.

While we were waiting, my mind was on many things, but having recently updated this blog, my thoughts veered toward what sorts of things we want to share about our journey.

The only major thing we've not shared here is that Rachel is a medical cannabis patient, and we started this treatment 3 years ago this month. We have tried pre-made tinctures and oils, and homemade products as well. All of them have helped to at least a small degree, but mainly with the rampant anxiety she lives with, and not so much with the seizures.

Our most recent change has been to begin using a sub-lingual with a 1:1 THC to CBD ratio, in an Indica strain, which is very helpful for the anxiety, and for helping with bedtime wakefulness. It was developed and the product created by the wonderful people at Oregon Microgrowers Guild. Rachel has been using it 3 times a day, steadily, for the last two weeks. In that time she's had one very small seizure, and though she's had some anxiety, she hasn't had a meltdown, or even a moderate attack.

We always have hope that whatever newest treatment we're using will be the one that makes the difference in her life; that it will make her life more manageable, and less stressful. The jury is still out on this tincture, but the nice thing about cannabis treatment is that there are so many options, and all of them are less scary than a new pharmaceutical treatment.

Rachel is still taking all of her prescribed medications, but cannabis has allowed her to wean off Klonopin, and we are hoping to make a reduction in her very high dose of Keppra.

This sub-lingual oil is in a healthy coconut oil base, and is kept refrigerated, so that's why it looks like it has white spots. The dosing is tiny, so there is a lot of room to increase. This 1 ml syringe contains 20 doses at our current level, and Rachel is dosing 3 times a day. Because of the low level of THC, Rachel is still able to concentrate at school, and doesn't feel "dopey" the way she does when she has to use drugs like Klonopin.

Please feel free to comment, ask questions, share knowledge, etc., but save your criticism. Rachel is an adult, and none of her treatments are pursued without her consent, which she is fully capable of giving. When you've almost exhausted all the prescription options, and you don't want to just sedate your child into oblivion, you get creative in your thinking, and your mind opens to trying something that humans have used safely for thousands of years. 

We believe that someday soon cannabis will be rescheduled at the federal level, and people all across America will have the option of treating their ailments with one of nature's most helpful plants.

Waiting For Rachel

Well, the post title pretty much sums up my life these days. The last couple of years have been so full, and I so wish that I had been better about updating here, and sharing all of the changes with you.

Sadly, Rachel and Jonah split up, but she enjoyed the time she had with him, painful as the end was. There was a lot of wisdom gained from the experience, and she grew in new ways as a result.

Rachel began taking early childhood education courses at the local community college, going half time, and taking Stewie with her, of course. She's currently taking a term off from that, and very much enjoying a Drawing class, while deciding whether to return to school next term, or devote her time to another opportunity.

Expect to see a slew of photos, and minor updates, while we continue our journey, and Rachel continues to expand her horizons. Here are a few recent images, taken at school:

Sometimes Stewart has to wait for Rachel, too. At the dentist, the hygienist's space is really too small for him to be in there, and every now and then he just needs a break from lying on a hard floor, or I'll take him for a walk and break for a few minutes, and we don't want to interrupt class to return him, so we have to wait a few minutes for Rachel to come get him.