Grandma

I knew this day would come. I’ve known since the day you died that someday, I would be here.

I started this blog as a mourning high schooler looking for an outlet, on the advice from a teacher who would end up officiating my wedding. It’s surreal to think of the way my writing has followed me through so many changes since then: college, a Multiple Sclerosis diagnosis, a graduate degree, a teaching career, five moves, marriage, and pregnancy. It’s even more surreal to think that I’ve had to navigate all of these things without your physical presence.

I started a new treatment plan this year that would allow us to have a baby. The new medication was scary because it makes most people sick. Most people have allergic reactions. I didn’t get sick. You were there.

Forty days post-infusion, we could start trying. I’m supposed to have the infusion every 6 months in order to prevent any new MS lesions on my brain. The doctor said, “The hope is that you won’t have any issues getting pregnant. If you do, things could get complicated. Treatment isn’t safe while pregnant or while trying to get pregnant.” The very first test I took was positive. A miracle. You were there.

I read about miscarriages. I cried for women I knew who lost their babies. I knew about other women who went to their first ultrasound appointments to find there was no heartbeat. The waiting is so brutal. Our baby was strong and healthy, wiggling around the screen. You were there.

We had some testing done that would ultimately identify the sex of the baby. I honestly didn’t have a feeling either way until about a week before we would receive the results. I had a very realistic dream of a baby girl, maybe about a year from now. Little did I know, my sister knew it was a girl from the beginning. You did too. I didn’t see you in that dream, but you were there.

I think about how I will feel when June comes. How did you feel when June came, in the year 1996? I’m as far along as you were… I think about that all the time. Will our girl come on the same day I did, exactly 26 years later? Dad doesn’t remember the exact date that I was due to arrive, but June 5 and June 7 are only 48 hours apart.

The nursery will be ready, the car seat base will be installed, the bags will be packed. I always thought that I would only want my husband and my mom in the room with me. You would be the most incredible grandma. You would love this baby so much. I know you sent her to me and I hope I will see you in her.

Momma, I hope you’ll be there when the day comes. She will know everything about you. I want her to play the piano like you, but you know, she will probably be as stubborn as I was about practicing. We will teach her that she can be whoever she wants to be because that’s what you taught me.

I remember you reading to me almost every night, and my favorite was “Love You Forever” by Robert Munsch. We’ll read it too. I only wish you were here to read it to her.

“I’ll love you forever,

I’ll like you for always,

as long as I’m living,

my baby you’ll be.”

Drugs

Drugs.

When there are decisions to be made, sometimes I write because it really sorts things out for me. Here I go.

If you know me well and we spend time together in the morning or the evening, you probably know that my medications basically dominate my schedule. If I don't take them at precisely 6:50 am and 8:30 pm, I'm going to have a reaction. It's not that bad, but it feels like I have a really terrible sunburn (I have experience with this)... which makes me pretty irritable. I have messed with the timing a few times. I used to take them at 4:30 am because I could sleep through the reaction, but I had a hard time falling asleep again and I was feeling drowsy during the day. I've also tried later in the evening so that I would be home in time, but I found that I was taking the AM and PM doses too close together. Years after taking my first dose of Tecfidera, I've mastered the schedule and it's incredibly rare that I miss a dose.

That's just one. There is also Vimpat, which prevents seizures. I'll never understand how the two aren't related, but my doctor swears it. I just happen to have Multiple Sclerosis and Epilepsy, and they both just happened to show up in my late teens/early 20s. Awesome. GREAT!

Well, every June right around my birthday, I have an MRI. That's the loud machine that takes detailed pictures of my brain while I try my best not to move or swallow. This time, there was a new lesion (scar) on my brain. It had been a long time since I'd had a new good-sized lesion. I've been living a pretty normal life the last five years. I haven't had any new symptoms, my senses are normal, I can walk, etc. Unfortunately this stupid scar showed up sometime between December and March. Somehow, miraculously, it didn't affect me. It's on the sensory part of my brain... and nothing. I am very lucky. My guardian angel probably has something to do with that.

Anyway, my MS doctor wants me to switch medications. The way I (drama queen) saw it: Seriously? ONE scar and you want me to uproot my whole life?! The way my doctor saw it: The lesion could have literally been one centimeter to the right and you'd be in a wheelchair. Fair point.

My Epilepsy doctor ALSO wants me to switch medications. WHY!? Because I am a young woman who would like to have babies, you know, sometime. The medication I'm on is a no-no for babies. It's not the safest medication on the market in the first place. We've talked about this a lot... just wait.

The drugs:

Ocrevus: You've for sure seen the commercial. People running around and jumping and smiling. It's a twice-a-year infusion. No more drug-dominated schedule. Basically a first for MS: Evidence is showing that babies are ok on Ocrevus! Though I should also mention that MS goes dormant during pregnancy which is pretty cool. Downsides... tough on the immune system. Increased risk of cancer, specifically breast (Seriously? Give me a break!). Some patients need steroids to help with reactions to the infusion... steroids have their own side effects.

Keppra: The most well-known medication for treating Epilepsy. Ok, this is the drug my seizure doctor wanted me to try first... and I said no. My mom was on Keppra during her last year. I love(d) her so much, but she was a nightmare person during that time. Mom... we agree on this, right? It wasn't your fault, love you. Keppra's number one side effect... irritability. I have so much trauma from the last year of her life, and maybe sometime I'll write about it, but just the name of the drug increases my blood pressure. On the other hand... safe for babies. Safe for young women. Safest drug on the market. Incredibly effective. UGH!

So the issue at hand here is that I'm an adult so no one will just TELL ME what to do. I have to make this decision. This is the kind of thing that I really wish I could talk to my mom about. She was wise and comforting and she would know what to say. She would give me the answer without telling me what to do. I have the most supportive people in my life but God, none of them are her. 

I like to pretend I don't have these diseases because looking at me, you'd never know. I get scared thinking about the future. I picture myself in a wheelchair and in constant pain. All I want is a brain that works. All the time. For the rest of my life. I know that all of you are rooting for me, too. I'm not asking for advice but I am asking for your prayers because I think Big Guy in the Sky is the only one who really knows the answer to this one.

Love, hugs, all the good stuff!