Conversations

Every time something big happens, I think you should be there.

My baby’s first steps filled me with pride and gratitude but something else, too, this feeling that nothing ever feels quite like it should because my mom isn’t here.

Sometimes I look at my daughter and it feels like so much time has passed. I’ve been different versions of myself. A mom, a wife, a teacher, a student, a friend, a girlfriend, an adult, a teenager. A kid and a grown-up. A girl and a woman. When I close my eyes, it doesn’t feel so long ago. I was fifteen and afraid but brave, too. The type of brave that sat at your bedside and held your hand while your breaths slowed. The type of brave that I didn’t really want to be, the type of brave that said, “You can go now, Mama, I’ll be okay.”

I wouldn’t be, really. And yet, I was. I am. The space where you should be is never full. It always feels empty. There are conversations we never got the chance to have. Healing I wish we could have done together. When we lose people, I think our brains glorify them into something they weren’t. In order to allow myself to heal, I’ve had to dig into things that I really didn’t want to: Why was I always so scared? Why am I such a people pleaser? Why am I so critical of myself?

You were anxious. You gave too much of yourself to others. You criticized every part of yourself where I saw no flaw. You loved me fiercely and unconditionally and yet you reserved no love for yourself.

I came into womanhood without you and I discovered the effort that goes into reversing the negative words I told myself. I like to think that we could have worked on it together.

As I navigate parenthood and marriage myself, I recognize how lucky I was to have two parents who loved each other so, so much. I witnessed a marriage that didn’t falter through pain and illness and tragedy. You did not see how beautiful you were, but Dad did. When it was finally time for him to move on… it was weird. I only ever envisioned him with you. And yet… it is so obvious that you picked her for him. She is kind, and good. She makes him better. The knowledge that he has her brings me peace. He loves her, so much, but I know that it doesn’t mean he loved you less. He finally retired, by the way. Mostly.

Each new stage of life brings a new kind of grief. I have to learn how to navigate without you because it will never feel natural, no matter how much time has passed. Sometimes I miss you so much it takes my breath away and it feels like I can’t find my way out. Sometimes I think of you, the way you loved me, and I smile because that’s the thing you were the very best at. Loving me. Loving us.

Here’s to the next stage, toddler motherhood. Stick around, I’m going to need you for this.

Always and forever.

Dear V

Dear Victoria,

Today is January 26 and you are one day shy of turning eight months old. You are full of joy. You have tried 52 foods and counting. You are funny on purpose. You bring joy to everyone you meet. If I had the vocabulary to tell you how much I love you, I would tell you every minute. Being your mom brings me so much happiness that the hard and sad things don’t seem so big. One of the hard and sad things is January 26. Today, your grandma would turn 66.

There are some things you do that remind me of her. Your nose crinkles when you REALLY laugh and it reminds me of my mom’s deep, genuine belly laugh. If you’re paying attention when I’m trying to take photos, your smiling face gets serious very fast (Did she teach you that up there, before you were down here?). But the thing that makes me feel the most connected to her, more than I’ve ever felt it in my life, is being your mom. The way I love you is the way she loved me. She said it all the time, but I see it now. She always said she loved me always and forever, but it wasn’t until YOU that I realized what she meant. I am enamored by you. Just when I think I couldn’t love you more, you smile your two-teeth smile and my heart bursts and grows to make more room.

“You are divine, my girl. You bring joy wherever you go. I love you deeply. I was thrilled the day you were born.” Your grandma wrote it to me and I’m writing it to you. Always and forever.

Happy birthday, Momma. I understand now.

Victoria Jane

"Missing Sarah Jane" -- the title I gave to my blog when I began writing in high school. I had always loved the way my mom's first and middle names flowed so beautifully.

I think many women who know they want children someday have a list. Mine is on the notes app on my phone, and whenever I would hear a name I loved, I added it to the list. When I started considering that having a baby could be a reality in the not-too-distant future, I knew we would use Jane. I loved my mom's middle name. My dad sometimes called her Janie. When we found out we were having a girl, it was a no-brainer.

We chose Victoria for a few reasons. I liked the idea of a V name and I had a few on my list. Brett and I were going through names one night when Victoria came up. Brett loved it right away. I was a little hesitant because I envisioned her nickname as Tori-- and Tori Hoxie is a little too much long-E vowel sound for me. Still... the name never left my mind. When Brett fell in love with it, he didn't even know it was my sister's middle name, which made it more special to me. We also learned through our favorite Russian (thanks, Nick!) that her Russian nickname would probably be Vika (Vee-Ka) which I really liked the sound of. When I gave my students three names to vote on, Victoria was the winner by far. I told them it was my husband's favorite too and B (a student very close to my heart) said, "PLEASE NAME YOUR BABY THAT!"

It wasn't until Victoria's birth that I was certain. Naming a whole person is a pretty big deal and I didn't want to be hasty in our decision. After laboring for around 38 hours and just over 40 minutes of pushing, her arrival signaled our official status as parents. When she was finally in my arms and Brett and I had a moment alone with her, we confirmed that Victoria Jane was the perfect name. A piece of her Aunt Lindsay, a piece of her Grandma Sarah, and "Vika"-- a tribute to her dad's love and respect for Russian language and culture.

To be honest, bringing a baby into the world was the biggest challenge I have faced in my life. It was a physical and mental marathon and labor/birth was only the beginning. My hormones quickly sent me into a spiraling depression which I was truly not prepared for. I wish I had known how common this is, but unfortunately it's not "normal" to talk about. A week after birth, I started an anti-depressant and today, six weeks into Victoria's life, I'm feeling like myself-- albeit a little less rested and sporting a pair of bags under my eyes.

I haven't said it out loud, but in the last six weeks, I have craved my mom's presence more than I ever have in the 11 years since I lost her. This stage in my life is one that I was so excited for, and yet, Victoria doesn't get to meet her grandma. She doesn't get to be showered in the love that my mom would give her, at least not in the physical sense. She is not lacking in the love of grandparents-- Brett's parents and my dad are wonderful, and she has the most spectacular great-grandma... but the space where my mom should be is empty. I feel that emptiness every day when I look at my perfect daughter. I wish she could feel the warmth of Sarah Jane's hugs, hear the beauty in her fingers on the piano keys, smell her muffins in the oven on a Saturday morning... I wish she could experience my mother's love the way I did.

Even more, I wish I could hear her voice. I wish I could see the joy of watching her become the most loving grandma that I know she would be. It's just not fair. It will never feel fair. I will never understand why. Still, I thank God for giving me 15 years with a mother who loved me unconditionally. No, she didn't do everything right all the time, but she showed me what it is to be a mother who loves her daughter.

I'm pretty good at that.

Peace

I wish I could call "Mom" from the contacts on my phone and it would be you that would answer.

I know that your number, the one I’ll have memorized for the rest of my life, belongs to someone else now.

I know that I was born on June 5, 1996 but I don’t know when I was due. My sister says it was a pretty short labor and delivery, but I don’t know how you felt. I don’t know if you felt ready, or if you knew for sure what my name would be. I guess the thing about moms is that no one remembers a child’s birth day like a mom does, and I don’t have you here to ask you about mine. Dad remembers parts, but I imagine he was a little overwhelmed and he doesn’t recall the details. Yesterday he said, “I know Mother’s Day is always hard for you.”

I know the doctor who delivered me in 1996 because it was the very same doctor who told us tearfully that you were dying a little over 15 years later. When he lost his own cancer battle last year, I thought about his impact on our lives and hoped that you would be reunited.

We’re about 4 weeks away from meeting our girl. We have been showered with love and gifts from family and friends and we have everything we need to begin our lives as a family of 3.

There is one glaringly obvious hole and it is the place where you should be, Mom.

It is the empty rocking chair where you should be rocking her. 

It is the stroller that you should be pushing this summer.

It is the chair in the waiting room at the hospital where you should be sitting, it is my hand you should be squeezing, it is the advice you should be giving, it is the questions that remain unanswered—

It is becoming a mother without my mother.

And yet…

I don’t feel afraid. I feel at peace. I know our girl is safe, I know she is healthy, and I feel this overwhelming joy— I get to bring a perfect gift into the world with my favorite person in the world, the love of my life, and I feel ready.

I don’t know how you do it, Mom, but I know it’s you. I know that you fill me with strength when I feel weak, you comfort me when I feel scared, and in the most life changing moments, you’re here even though I can’t see you. I wish I could. My daughter will know her grandma through the stories I will tell her and the lessons I will teach her. 

Something tells me that you’ve probably already met.

Thanks for being my mom. I love you always and forever.

 

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