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!

Imaginary Day

Dear Momma,

It's been awhile. This weekend we went back home.

It had been time to clean out my bedroom for a long time, but I kept putting it off because I knew it would be hard. Not hard because I had to get rid of things, but because I knew I would find things that would rip my heart out.

1. Your robe.
2. Your watch.
3. Your lipstick... so old but smells the same.

I love being home because the house feels like you. It's open and inviting and decorated with the things you loved. I still remember you decorating the house when we first moved in. I remember the old floral couches and the dark wood paneling. I remember how long it took to paint the green wall... what, five coats of paint? I remember when you decided to paint the blue wall. That one is hard because you weren't yourself then. We didn't really understand it, but Dad painted it for you anyway. It still doesn't feel right.

The windows on the back of the house almost make it seem like the inside opens up to the outside. God, looking out at the pasture makes me feel so at peace. I dreaded moving away from the farm and into town but you made it a home. The grass and the garden and the Hostas and the Black-Eyed Susans. The birds and the trees and the bees and the wind chimes. Standing outside with my eyes closed in the breeze... I can pretend you never had to go. I can pretend you're right next to me.

4. Your glasses.
5. Your Blackberry with Duct tape because you dropped it a thousand times.
6. A birthday card you and Dad signed.

I thought we were so different, you and I. You plucked the keys like an artist paints a masterpiece and I never wanted to practice. You spent hours and hours outside while I texted my friends on the couch. You were so patient with every person you met and I had a preteen temper. You asked me to sing and I never really felt like it. Every time we were in the car you played Pat Metheny and I never really understood why someone would want to listen to instrumental music all the time.

7. Our hospital bracelets... from the day I was born.
8. The recording of your funeral.
9. Sheet music-- Be Thou My Vision. One of your favorites.
10. The old piano lamp that lit your sheet music at night.
11. A newspaper article with a photo of my newborn self. I'm jealous of her-- she still had 15 years left with you.

Momma, I'm practicing again. I'm working on bass clef... never quite mastered that. As you know, I always tried to play by ear. You could tell.

My husband and I planted our own garden this year. Tomatoes, peppers, and zinnias... because you loved them. I love being outside and you taught me to appreciate the God-given beauty of the natural world. It's funny how you still manage to teach me from so far away. Still not sold on asparagus. I tried, I swear!

I kind of grew out of the temper, but I do get frustrated pretty easily. I discovered in therapy that I have a fear of losing control... working on that too. Trying to see myself the way you did.

I never stopped singing, Momma. Not a single day goes by without it. I hope you can hear me.

I wanted to share with you one last thing, and it's my favorite. My favorite instrumental pieces... the ones I listen to over and over again:

- The Lion King Orchestra Suite - Hans Zimmer (I cry every time)
- Turning Page (Instrumental) - Sleeping At Last
- Jurassic Park Theme - The Piano Guys
- Carnival of the Animals, R. 125: The Swan - Camille Saint-Saéns
- Holding On - The Piano Guys
- Remember - Hans Zimmer
- Can't Help Falling In Love - Daniel Jang
- Time - Hans Zimmer
- Canon in D, P. 37 - Orpheus Chamber Orchestra (Pachelbel)
- Cello Suite No. 1 in G Major - Anner Bylsma (Bach)
- Fight Song / Amazing Grace - The Piano Guys
- Beauty and the Beast Overture - Alan Menken
- Mercury - Sleeping at Last

Last... Imaginary Day by Pat Metheny.

I like to think we're listening together. I love you.

Han

                                                 

"Forget yesterday, live for today, and hope for tomorrow."

Today is National Suicide Prevention Day.

Not long ago, this day didn't exist.

There was no nationwide effort geared toward preventing suicide. We didn't talk about mental health and if you had a mental illness, you kept to yourself. Many, many, many still do. I've decided to share my story because I am alive and I have the ability to do so. I'm lucky, some haven't been, and I hope if you're reading this and you're struggling, you will be lucky too.

I teach 5th grade. To be completely honest with you, it's HARD. These kids are 10 and 11. Their bodies are changing and their minds are changing. They aren't little kids anymore, but they aren't really big kids either. They're going through a phase during which normalcy doesn't really exist. Some days, they are completely disrespectful. And I desperately want to yell at them while pulling my hair out. I breathe and I come back to myself and I remember: they're humans. They're kids. I'm not perfect, how can I expect them to be perfect? Then, I remember when I was in 5th grade.

When I was in 5th grade, my mom was diagnosed with breast cancer. I was 10 and I really didn't understand the severity of the situation, but the realization that I could lose her was somewhere in the back of my head. One day, I lost it. I don't know where it came from or how it happened, but I remember being at recess and then I remember sobbing on the floor in the hallway at the top of the staircase. I couldn't breathe. I didn't even care that my classmates could see me. Some of them probably remember that day more clearly than I do, but now, I remember it as the day I started my battle.

After that day, I began to close myself off. I didn't feel like hanging out with my friends and I didn't like school anymore. I spent a lot of time on the internet. Soon, it was summer and I started to sleep all the time. I stayed up really late and slept until the afternoon. I would wake up and have panic attacks. I would call my mom and tell her I didn't know what to do; that I felt helpless. Here's the really terrible thing that I still don't understand: I started to imagine what it would be like to die. How could an 11 year old feel these things? How could a kid feel so desperate when nothing really happened? My mom continued to get better and I continued to get worse. I started going to therapy and I started taking medication, but I was miserable. I started 6th grade and I hated every second of it.  I was diagnosed with anxiety and depression. Eventually, my parents decided to admit me to a mental health center inside of a hospital because they were terrified of what might happen. I was too. Truthfully, I don't remember much about my experience there. I don't remember any of the people or any of my treatment. Vividly, I remember what my room looked like. It was completely white; nothing on the walls except white. After some time passed, I went home before returning to the same place for the same reason. I was so miserably depressed and scared of myself that I wanted to go back to the white room instead of staying in the place I called home. I felt guilty. I felt wrong. My heart felt heavy. I didn't like who I was or what I was doing to my family. I didn't see any of the light around me... only darkness.

"Forget yesterday, live for today, and hope for tomorrow."

A nurse, the only person I remember from the hospital, repeated these words to me. When I returned home from my final inpatient treatment, I posted them on the wall above the window in my bedroom. Every morning when I woke up, I read these words to myself. I continued to go to therapy, I continued taking medication, and I started spending time with my friends again. One day, I stopped going to therapy. Soon after, I decided to try a day without my medication.

Ten years have passed since I began my recovery. 

On the most hopeless days, I never could have imagined that I would be here. I realize now that big changes were happening in my life and in the process of finding myself, I lost myself completely. I hope and pray that I never have to go through it again, but I know it's possible. There were times when I was afraid I would fall again.  When my mom died, I was terrified. My freshman year of college, I was terrified. It took me a long time to learn that bad days, bad weeks, and even bad years don't have to pull me back to that place. I still struggle with anxiety, but I reach out to the people who love and support me and I push through. I know now that I have the tools to survive. I always keep in mind that I'm never alone... even when I'm by myself. It's taken me a long time to write about my experience because I was afraid of what people would think or assume about me, but I've realized none of that really matters.

If you are struggling, remember that you're never alone. Remember that tomorrow will come and the future is brighter. If you're scared, think about the days on the other side of the pain. Even if it seems unrealistic, you will wake up 10 years from now and these days will be only distant memory. If you are feeling hopeless, worthless, guilty, scared... reach out. Grab a hand. Grab MY hand! I will help you and I will listen. You're NEVER, ever, EVER alone. You're loved and your future is so bright. Bright beyond your wildest dreams.

"Forget yesterday, live for today, and hope for tomorrow."

Before You Know It

Life happens so quickly that sometimes the biggest events in your life pass you by without the recognition they deserve. Since I'll be teaching 5th grade writing, I decided I needed to make sure I still knew how to write.

So much has happened since the last time I wrote a post. I graduated with honors and received my Bachelor's degree in Elementary Education. I was accepted into an accelerated Master's program. I got the job of my dreams at an incredible school working with incredible people. I get to marry the sweetest, most amazing man in just over a year. It all happened so fast that I haven't really taken the time to reflect on what it all means for my life and my future.

As I sat down and began to reflect on the last few months, I lost it. Seriously. I've been so preoccupied with setting up my classroom, planning for the first week of school, finding a venue, and finishing homework assignments that I forgot to be grateful. I forgot to thank the people in my life who helped me get here and I forgot to thank God for the blessings he has provided me this year.

First: My family. What would I do without you all? When I didn't have the most important person in my life, you all stepped in to fill in the gaps. You pushed me and you encouraged me and most of all, you loved me through the hardest times in my life. Because of you, I've never felt alone and I always strived to succeed. My grandparents (on both sides) taught me the importance of kindness and love and were examples of what those concepts looked like. My sister has taught me so much, even when I didn't want to hear it. The new family I have gained through my fiancé was meant to be my family. And my dad... he is a very special guy. When I was diagnosed with MS and didn't understand any of it, I needed him to be level-headed and strong for me and that's exactly what he did. I really can't put it into words how much I appreciate him, so I'll leave it at this: I couldn't have asked for a better dad and God knew what He was doing when He made me his daughter.

My friends: I have so many people to be thankful for that it would take me a year to list them all. These people have alleviated stress, comforted me in times of sadness, talked me through fears, and listened when I needed to vent. They take my mind off the hardest parts of life and lead me to a more positive outlook. I'm so lucky to have constant, true friends who have been with me since high school but I've also been blessed with new friends who encourage me to be a better person. I also wouldn't have met Brett if it weren't for my friends, and that's pretty special. The family I have gained at my new school has already made me feel at home and I have a brand new circle of friends who have welcomed me with open arms.

Brett, who has been the most unexpected blessing in my life... he has made me feel so loved and supported through all of my STUFF this summer. He has seen more tears than anyone and he has stayed by my side through it all, holding my hand and guiding me in the right directions. I'm so lucky that I get to be his wife next year!

Finally, my mom. Sometimes she feels so far away and my heart drops at the thought of losing her seven years ago this Sunday. I still question God all the time, just like I did on the Friday afternoon that changed my life forever. Why did she have to go when she did? Couldn't she have stuck around until I had graduated high school? Couldn't she have been there to be my shoulder to cry on through my first breakup? What about when I was diagnosed with MS? Or when I got my first real job? When the love of my life asked me to marry him? What about last week, when I found out I finished my first four graduate classes with a 4.0? After 7 years, she's still the first person I want to call when something big happens. I don't think that will ever change. But here is what I know: she pushes me when I need it. She catches me when I'm falling. She holds me when I'm scared. Because of her, I know how to talk to students who are grieving. I know how to support the kids who just CAN'T on a Tuesday afternoon because I've been there. I know that when one of my girls feels like the world is against her, it's OK to let her cry it out. We haven't had the same experiences, but I know I'm equipped with the empathy I need to work through it with them. I will always be wounded... but I will also be a lover, a teacher, a listener, a helper, a giver, a comforter, a hugger, and a fighter.

I will conclude with a quote from my very first blog post, age 17:

I'm so thankful she's always watching over me... healing the wounds.

Déjà vu

In 2015, I was diagnosed with multiple sclerosis -- a chronic disease that makes me feel funny sometimes and leaves scars on my brain. Until late last year, I hadn't had many symptoms and the worst part of the disease was taking medication twice a day (10:36 pm and 4:22 am unless I wanted to have reactions). In August, something really weird started happening to me and not many people know about it because... I didn't really know what to say until now. I didn't know how to explain it and honestly, it sounds like I'm making it up or I'm crazy. I did a lot of research and I had a pretty good idea what was happening to me, but I didn't have any type of confirmation so I tried to stop thinking about it. I had a sinking feeling that I was having seizures.

It's happened 14 times since I started keeping track in December. I start to feel unlike myself. It feels like I've been exactly where I am before, like I've experienced exactly what I'm experiencing before, like I've read what I'm reading before. "Deja vu" is as close as I can get to describing this feeling, but it's much more extreme than that. In a minute or two, I feel exhausted, defeated, drained, confused, scared, nauseous--honestly, it feels like I can't go on. It is one of the worst feelings I've ever experienced, and that's saying something because I've been through a lot. It's really scary and emotional and the worst part is that it's so difficult to describe. Friends who have witnessed it tell me I seem absent or a little sad, but wouldn't know anything was happening if I hadn't told them. I keep notes on what was taking place when it happens, and when I go back and read them, the experiences seem unfamiliar. It's almost like they didn't happen at all. I have been anxious and irritable and I haven't spent a lot of time with the people I care about because of that.

As you can imagine, describing these episodes to my dad or even my doctor was pretty difficult. The first time, Dr. M thought they may be related to migraines and suggested I start keeping track (which I did). Yesterday, I had an MRI and again explained to him what was going on. We went through the pictures of my brain and he identified a scar on the far edge of my brain. It was not a new scar. It was a larger scar that appeared on my scans from 2017, but until August, it hadn't been a problem. He told me my notes and descriptions led him to believe this scar was causing me to have seizures--temporal lobe seizures, often identified by odd feelings of déjà vu and fear. Symptoms of this disease were bound to show up eventually.

I'm relieved to have a reason. I'm thankful because this means I'm not crazy. I'm nervous because there will be more testing (an EEG) and more medication (anti-seizure)... but I'm grateful to have an answer. I'm looking forward to waking up in the morning and not being afraid. It has been really scary not knowing when it was going to happen or how awful I would feel. I have not felt like myself in months. I have felt angry, mean, scared, ANXIOUS, sad, and all sorts of feelings that I wouldn't wish on anyone. I'm grateful to have a reason for all of this and I am looking forward to the end of it. I can't wait to feel like myself and act like myself again. Thankful to have my guardian angel with me all the time.

Ice Cold Burns

It takes my breath away like 
The ice cold wind chill at 6 am on a Tuesday
It hits me like
Someone slamming on the brakes in front of my car last week
It comes in waves like
the salt water on the Oregon coast
Grief and I have known each other for a long time...
Words don't exist to describe it
The way it feels is impossible to imagine
Its grip is stronger than weight
Stickier than glue

I read her old Facebook posts and emails
...try to grasp onto who she was
Before everything in her brain forgot
Where it was supposed to be ... what it was supposed to do
I stare at her name in my contacts
Wishing I could call // wishing she would answer
I try to imagine the way her voice would sound if
I could tell her how far I've come since fifteen
Missing her so much my heart burns like it's on fire
Smoldering like a bright orange ember

I'm still so angry at the tumor
in her brain that wouldn't let her be my mom
I'm still so angry at the medications
that stole her personality and replaced it with
somebody else
The medications that broke my heart

I remember walking out of the church that day
I remember crying so hard I couldn't breathe
I clung to my sister as
Everyone who came to celebrate her life
realized a funeral is not a celebration at all
I wonder if they can remember the way it felt
I wonder if it hurt for them to breathe
the way it did for me

On August 12 I wasn't even surprised
I had known for a long time
What was going to happen
What I was about to lose
So why is it that six years later
It takes my breath away like 
The ice cold wind chill at 6 am on a Tuesday

"Try a day with no negative words." -Sarah Jane, September 8, 2009