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

                                                 

"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 

36,500

I don't talk about MS very much because I'd rather pretend it doesn't exist. I'd like to pretend I don't have it because there are people who have it much worse than I do. I know what it's like to lose someone I love more than anything to a crippling disease--and my disease isn't crippling for me. It's crippling for some people and I'm very lucky I'm not one of those people at this point in my life. But no matter how much I want to pretend it doesn't exist, it's not just going to go away.

When I began this journey, I started taking Copaxone. It's a drug in the form of injections. Its job is to slow down the progression of multiple sclerosis. Ideally, it would lengthen the amount of time between the attacks on my brain (or make them stop altogether). I gave myself the injections every other day for months and had another MRI which showed us the Copaxone was not effective for me. It was scary to hear but I was not a fan of giving myself shots 3-4 times a week, especially considering my dislike for needles. So, we went over our options and I started taking Tecfidera. This is medication in the form of pills. I take one pill twice a day. While I was super happy to be taking pill instead of doing injections, I have really odd reactions to the pills (which are apparently common). Basically, it feels like (and looks like) I have a terrible sunburn, I feel very heavy and tired, and I pretty much have to sit or lie down. I'm not sure why it happens, and obviously it's not the end of the world, but wow, it's frustrating to plan around.

The worst part about the medication are the risks that are associated with it. By taking the medication, I put myself at risk of getting PML--or progressive multifocal leukoencephalopathy. PML is diagnosed after the JC virus is reactivated in the brain due to a medication which suppresses the immune system (like mine). JC virus is present in the brains of many, many people but exists dormant in most. Because of this risk, I have to get bloodwork every 3 months as long as I'm on Tecfidera. As long as my bloodcounts stay in a normal range, I'm not at risk for developing PML.

Risk #2. Women cannot continue taking Tecfidera through pregnancy. This means if I decided to have children someday, I would have to stop treatment and risk relapse. To continue taking Tecfidera would be an incredible risk and decreases the chance of having a healthy baby significantly. My doctor pretty much made me promise that I wouldn't get pregnant while taking the medication, and while I'm definitely not planning on getting pregnant any time soon, it's something I fear as I think about my future.

2 pills x 365 days = 730 pills a year x 50 years = 36,500 pills over the next 50 years if I continued this medication. Isn't that crazy? The cost of the medication is even more insane. If I were not insured, the cost of Tecfidera would be $2,750,000 over the next 50 years.

I don't understand why I was given this challenge, but maybe I will someday. I can say that everything I've gone through in my life so far has had a purpose--I would not be nearly as strong as I am without all of it. Perhaps God's plan for me is to help others like me, and as I grow to understand this disease, I hope I'm getting closer to being able to do that.

Things I Wanted to Say But Didn't: A Mother's Day Post

Hi there! You know me. I'm your friend, your family member, your acquaintance, or someone you're just friends with on Facebook because you wanted to creep on my pictures. This post is for you. I'm about to vent about all the things that I've wanted to say to you, not to make you feel bad, but to explain my feelings and help you understand them.

1. To the person who complained about his/her mom, hoping for advice:

Here's what I can tell you. Once you said a single negative thing about your mother, I tuned out. I bit my lip and hoped I wouldn't blurt out what I was thinking. I would do ANYTHING to have my mom back. I would do ANYTHING to go back and reverse all of our fights, all of the times I went to bed without saying goodnight, and all of the times I slammed my door hoping it would hurt her feelings. Before you complain about your mom, picture your life without her. Imagine what it would be like if she weren't there at all. Rethink the issue. Call her back. Apologize, tell her you love her, and appreciate her for everything she does. You may have gotten in a fight but imagine never being able to talk to her again. Pray to God that night and thank Him for blessing you with a mother who loves you enough to argue because she cares SO MUCH.

2. To the person who posted, "If only I could just go home and cry to my mom..." (or something to that nature):

I get it. It sucks going to college and being away from your mom. She rocks. She does a lot for you and she's always there for you. Here's the thing though: she's a phone call away at all times. I want to reply to your post and tell you how much I long to call my mom just to hear her voice. I want to tell you how many times I've tried to delete her phone number. If you really wanted to, you could drive home and hug your mom and cry in her lap all night. Wow...what I would give to have that luxury. Here's what I want you to do: call your mom. Don't complain about your boyfriend or your classes or your lack of funds. Tell her how much you love her; how much you appreciate her and everything she does. Ask her about her day...do you remember the last time you did that? I get that you miss her and that tweet was so #relatable, but consider how lucky you are to have her in your life and pick up the phone.

3. To the person who asked, on Mother's Day, "Hey, how are you doing?"

Well, actually this is one of the worst days of the year so I'm pretty awful. But I can't tell you that because to explain how I'm feeling and why would absolutely drain you. To be honest, I'm probably laying in my bed curled in a ball wishing I could get my mom a Mother's Day gift aside from the $20 flowers I set at her grave that will die in a week. I'm hurting because every time I post about my mom, I do it because it's all I can do. It's the only way I can celebrate her and feel that others are celebrating her too. So to answer your question: I'm filled with sadness today, but there's really not much you can do about it. I appreciate the gesture, but if my response is lacking, you know why.

4. To the person who is wondering why I haven't been talkative today, why I've been snappy today, why I seem grumpy or stressed:

I miss my mom. I miss her so much that it feels like my heart is being torn out of my chest sometimes. I'm a master of disguise and you've probably never (or rarely) seen me break down because I've gotten really good at hiding it when I feel like I'm about to lose it. I'm good at leaving the room at just the right moment, hiding the redness and puffiness after a short cry, and pasting a smile on my face when I don't want to ruin everyone's time. I know that sometimes it probably seems like I'm absent, and that's probably because I am. I'm good at hiding it but it can be seriously exhausting. If I take it out on you, I sincerely apologize. I'm not myself and it's not your fault. On the other hand, the drop of a pin can make me cry some days. These are usually the days that I SHOULD stay home and take a personal day, but unfortunately college classes don't allow me to do that. Not many people see me cry, but if you're one of them...thanks for not staring at me like I'm a crazy woman.

5. To the person who I just can't empathize with:

I'm sorry. I really wish I could comfort you and understand why you're so upset over something as small as a guy who treats you like crap or a C in your math class, but I honestly can't. It's not your fault and I understand that this problem is hurting you terribly. I get that in your view, you are incredibly unlucky and your life couldn't get any worse, but to be honest...it totally could. I don't mean to be selfish here, I'm just being truthful. After experiencing a traumatic loss, other problems seem so small. My mother died way before any of us were ready to lose her. I was FIFTEEN. She will not see me graduate, she won't see me get married, she doesn't get to meet my boyfriend, I can't call her, I can't see her; there's a HUGE hole where she once was. Truly, I am sorry if my advice or response seems harsh, but your problem will pass and you will move on. There are bigger problems in the world. As Kourtney Kardashian once exclaimed to her sister, "Kim, (there are) people (that) are dying." BE THANKFUL FOR WHAT YOU HAVE!

6. To my aunts, my sisters, my friends’ moms, my coworkers, and everyone else who has stepped in when I needed a mom:

Thank you. Thank you for stepping in when I needed a mom. Thank you for being there for me as I planned my wedding, as I made hard decisions, and as I feared what was next for me. My future children will not get to meet their grandma. I will teach them about her and they will know the person she was, but they won’t get to see her smile face-to-face. However— my children will get to meet all of you. They will hear all of the things you have done for me. They will also know that their grandma played a big part in you coming into my life when I needed you most— whether we knew it or not.  Thank you.

7. To the mothers who are missing a child they carried, held, or never got the chance to meet:

You ARE a mother. You deserve to be celebrated in every way. I cannot fathom what this day is like for you. I know you miss your baby every single day and to see all of the posts is incredibly hard. I have never experienced the loss you have, so I can’t tell you that I know what you’re going through, but my heart breaks for you just the same. You ARE a mother and I truly believe you will meet again someday. I am thinking of you and sending you love on this day and all of the other days.

8. To the hundreds of people who will share Mother's Day posts:

I'm so happy that you're celebrating your mom. She deserves it and so much more, but when you post that "Happy Mother's Day Mom! I love you and I'm so thankful for you!" status and picture, think about it first. Are you showing her how thankful you are for her every day? Are you posting it just because everyone else is, or are you posting it because you genuinely want your mom to know how much you love her? Are you spending the day with her (or if you can't, did you give her a call)? I would give anything to spend the holiday with my mom face-to-face. What if this is the last Mother's Day you get to celebrate her?


Gosh, I loved my mom so much and I know that I didn't show her even half as much appreciation as I could have in our time together. PLEASE make every day with your parents count. I may be biased but I can tell you there is absolutely nothing worse than losing a mother, especially at 15. Use all of the time you have left with her to value everything she's done. 

For God's sake...the woman probably spent hours and hours in labor for you. She deserves endless hugs and love for that alone.

Let me tell you what I wish I'd known...

This is a story about how you can't expect another person to fix your heart after a heartbreaking loss. This is a story about how you must love yourself before you try to love someone else.

You are 15. Your mom lost her battle to breast cancer in August, you started your sophomore year of high school the next week. You get through the days forcing a smile and focusing on school. Inside, you are empty. You are lost. You are numb. You are questioning your purpose. You. Are. Fifteen. You don't know what you want.

You start talking to a boy. He is a family friend, he is kind, he is there. You begin to lean on him. You start dating him. You think you are in love. You think you are happy.

At night, you are lost. You are numb. You're still fifteen. You still don't know what you want.

Your boyfriend graduates and you are trying to grasp onto him. You can't handle another loss so you try to control the situation. The relationship begins to turn into a negative spiral of mutual mean words, tears, and more heartbreak.

You hold on because you attached yourself. You hold on because you don't know what life is like without him and without your mom at the same time. You go outside at night and look at the stars and you cry. You ask your mom how to get through this. You ask her what to do. You break down at the realization that she can't answer you.

The next two years of high school fly by. You try to be happy, you try to focus on school and on music. You are on and off and on and off with the same boy. You are 17. You still don't know what you want. You think you do. He knows you don't. It is toxic. You question your worth and you lose yourself. You do not love yourself anymore.

You make new friends senior year. They show you what it's like to have fun again. They make you happy. You love them and they love you and it's real, genuine, "I care about you" love. You graduate. Your mom isn't in the audience. Your friends support you and you get through it with them by your side. You realize that your senior summer is coming to an end and you're all going in separate directions. You have a breakdown. You ask your mom what to do. She can't answer.

You move away from the house that your mother made home. You are in constant contact with your friends. You don't feel that you have lost them because you haven't. They are still there. You are okay. You're still on and off and on and off with a boy who you thought you needed. You don't need each other anymore...he knows it, you do not.

It's summer again and you spend every night with your friends. You find that you're spending less time crying and mourning, more time loving and laughing. You ask yourself why you couldn't let yourself be happy in high school. You realize he was holding you back. You were holding yourself back. You do not need to lean on anyone anymore.

You return to college for your sophomore year. It's been four years since your mom died. It's been four years since you met him. You are starting to love your life again. You are starting to lose contact with him. You begin to reconnect with old friends and you talk every day. You never lost contact with your friends from senior year. They never make you feel like you're losing them. They are always there.

You talk to him. You end it for good. You let go.

You focus on school, you focus on your friends, you focus on yourself. You get a tattoo, you fall in love with a musical, you practice yoga, and you read. You find the 15-year-old who has been trying to show herself since sophomore year of high school.

You meet someone who challenges you in a good way. He is smart and kind and he loves to read as much as you do. He listens to your music and he doesn't complain. You spend more and more time together and he never once makes you question your worth. He makes you feel proud to be who you are.

You realize that for four years you were trying to fill a hole in your heart. You were leaning on someone in hopes that he would take away the pain. You realize that the pain will never go away completely and you can't rely on another person to take away the sadness that is in your heart. You realize that you were fifteen and you were much too young to know what you wanted. You realize that you were so scared to lose him because you had completely lost yourself.

You go outside and look at the stars and you talk to your mom. You know she can't answer but that's okay because this time, you don't have any questions. This time, you want her to know that you're happy. This time, you want her to know that you know who you are. You know she can see that you love yourself again. You feel her warm smile even though she isn't there.

I am grateful to have had my high school boyfriend to lean on for four years. I'm not saying that he was a bad person, I'm saying it was a bad relationship because I was not in any condition to BE in a relationship. I tried to fill a void that could not be filled with anyone but my mom. I lost myself in the process.

I hope that if you are lost, you find yourself and you love yourself before you try to love someone else. You are beautiful and you are worthy of self-love. Do not let another person cloud that vision.

Happiness

Hello friends! It has been far too long since I've blogged about something happy, so here I go.

I have so much to be thankful for that I'm not even sure I'll be able to write all of it down. So far, 2016 has been filled with the most incredible thing--happiness!!!

First of all, my second year in Omaha has been so much better than I imagined. I've met the best people, my dog is here, my cat is here, and this place feels more and more like home every day. I'm taking classes that have reinforced my love for children and books. I got a 93% on a math test (that one's for you, Grandpa!), and I'm learning about things that I genuinely want to learn about.

I have the best job on the planet. I am incredibly grateful to have met Carrie and her two wonderful children. We learn together, we struggle with math together, we read together, we spell together, and we have so much fun. They teach me more than I teach them--lessons of creativity, patience and kindness. I beam when I see the love in their eyes when they play with my dog. Those kids make me a better person every day! I have a pretty good feeling my mom had a hand in placing them into my life.

My roommates! Never did I ever think this living situation would work as well as the way it has. Sometimes they drive me crazy, but I wouldn't have it any other way. Movies and late night trips to Bucky's are a couple of my favorite things! The best part is that I always have someone to talk to and I never feel alone. We just click and we are completely honest with each other. It doesn't hurt that the boys are always willing to kill spiders in the kitchen. These people are my family and I love them.

My FRIENDS! Even the ones that live 4 hours away...know that I love you so much and I could not handle the tough days without you. Chances are, if you are in a group chat with me and I'm asking you for boy advice constantly (like every 5 minutes, let's be real), I consider you one of the very best friends I have. I can't forget to mention the new friends that I've met this year. I'm shy and I'm not very good at meeting people, but somehow I've come across some really great ones. Two of you are getting married in the next couple of years and I am SO excited to stand beside you. Sierra, my mom will be there beaming down at you. I know she is so proud of who you are. Molly, she would have loved to meet you and I know she's so glad we are friends. Ugh, I love weddings and I'm tearing up thinking about it. There are so many people who have added to my list of reasons to smile lately. Thank you, friends...you know who you are. :)

I miss my mom so much and I would do anything to have her here with me. Still, as I am finding myself and becoming more confident each day, I'm seeing all of the things she would be proud of me for. I'm musical, I'm kind, I'm intuitive, I'm compassionate. I'm freakin' smart!!!! Thanks Momma, for helping me become who I am. There is so much less crying these days and there are so many more smiles.

It's Quiet Uptown

Things I miss

My grandma -- so much. She would have been 90 on the 15th of December. What a cool woman she was. She encouraged education and intelligence. She was and always will be the root of my love for music. Her birthday reminds me of her smile, her laugh, and her sarcasm.

https://youtu.be/OiPkhHh0ZoE
Her love for the piano was fascinating and inspiring. What a beautiful soul she was.

The house I spent my childhood in - We moved out so long ago but it doesn't seem that way. My diapers were changed in that house. I learned to play the piano in that house. I played with my first dogs and cats in that house.

My cousins and I made a clubhouse out of a chicken house in the yard.
I played on a tire swing for hours.
I laid in the hammock with my cats (sorry, cats) and looked up at the sky through the trees. I'll remember that view forever.
I threw up in my sister's room (sorry, Linds) all over the carpet.
I watched cartoons on the little green TV in the kitchen every morning.
I waited for the bus with my cousins.
I watched my grandpa in the garden.
I watched my mother plant flowers and decorate for every season.
I had numerous tea parties (with myself) on the front deck.
I learned how to ride my bike in the long, gravel driveway.
I played basketball in the barn.
I explored in the silo (probably dangerous but hey I was a farm kid).
I chose to paint my room cotton candy pink, a decision I would later regret after eating too much of it at the circus.
I took showers in the huge, dark basement when we were remodeling the bathroom upstairs. My mom made me wear water shoes (Thanks, Mom. I would have lost my feet).
When the farm flooded, I watched the basement fill with water and I watched the cat look down at his impending death (he survived. What a drama queen.)
My childhood birthdays and holidays were spent in the dining room.
My mom created the home that I loved so much in that old farmhouse.
I miss that house and I look away every time I drive by - it hurts to know that it's gone.



Momma - I wish I could put into words how much I miss her. So many things remind me of her.
Today, I looked at my own hands and saw hers. I would do anything to see her hands dash across the keys of our piano. I miss the way she tapped her fingers on the counter, on the table, on the steering wheel.

I miss her voice. She called me Bubble and told me she would love me always and forever.
I miss the smell of her perfume. She always smelled like flowers and spice.
I miss Pat Metheny, her soundtrack of choice. I know so many songs by heart.
I miss the way she would get mad at me for taking selfies with my tongue out (why did I do that? Ew).
I miss her handwriting.
I miss the mornings she would drive me to school.
I miss calling her. I still have her number saved in my phone...I don't have it in me to delete it. Even if I did, I know I'll have it memorized for the rest of my life.
I miss the way she tucked me in at night.
I miss the way she would take FOREVER to do her hair in the morning.
I miss her funny faces.
I miss her laugh.
I miss her smile.
I miss her. I love her. So much of me is made up of who she was. She lives on through my voice, she lives on through my music, she lives on in my heart.

I've been emotional this holiday. This song is partly responsible, but it feels good to cry sometimes. If you're grieving, I hope this song is as therapeutic for you as it has been for me.
https://www.youtube.com/watch?v=ZCJ-9D54lOI
(A little background so it makes a little more sense...Hamilton the Musical follows the biography of Alexander Hamilton. This song takes place after the death of his son, Philip, and illustrates the grief of Alexander and his wife.)

"There are moments that the words don’t reach
There is suffering too terrible to name
You hold your child as tight as you can
And push away the unimaginable
The moments when you’re in so deep
It feels easier to just swim down"

"There are moments that the words don’t reach
There is a grace too powerful to name
We push away what we can never understand
We push away the unimaginable"

Happy birthday! You have MS.

Multiple Sclerosis and What It Means for Me

I haven't written in a really long time but I wasn't exactly sure how to share this news any other way.

I'm going to start from the beginning for those of you who haven't been informed. Back in July of 2014, I woke up and noticed my left arm felt a little funny. The best way I can describe it is half-asleep but still totally useable. I still had feeling in my arm but couldn't feel texture as well. For example, I couldn't really tell the difference between the way my hair felt and the way my clothes felt. This feeling progressed until it was basically consuming my left side from the waist up, and then regressed until it was just in the tips of my fingers. I talked to my aunt about it (Nancy, I seriously don't know what I would do without you. You are an angel.) and we decided it would be a good idea to see my doctor. She referred me to a neurologist, who then sent me to get an MRI of my brain and of my spinal cord. Once he had seen the results, he decided to send me to a Multiple Sclerosis specialist. All of this happened in a period of about a week and I really didn't understand.

Basically, the MRIs revealed that I had "scars" on both my spinal chord and my brain. This was a hard pill to swallow for my dad and I. We've both spent so much time in hospitals over the last 10 years and because of my mom, we automatically assumed the worst. She had breast cancer, but eventually it spread to her brain. She had to have the tumor removed and it was one of the scariest days of our lives. When I got the call from my neurologist, I broke down in the middle of the UNO library (thanks for letting me sob on your shoulder Lisa).

When I saw the specialist, he wasn't ready to diagnose me with MS. He could see scars that suggested MS and the "numbness" in my arm was also an indicator, but without more proof, he couldn't make a diagnosis. (p.s. the numbness in my arm had subsided by this point)

Fast forward to last Wednesday. I took a hot bath and noticed that my arm felt the same numbness that I had felt in July. Panicked.

Fast forward again to today (June 4, THE DAY BEFORE MY BIRTHDAY). Another MRI and an appointment with my specialist. The numbness in my arm has decreased and is strongest in my fingers. My specialist says heat often "wakes up" an old MS attack, which would explain the numbness I feel now. This isn't dangerous and does no damage, may just be kind of annoying. A few more scars have appeared on my brain and I have been officially diagnosed with Relapsing-Remitting Multiple Sclerosis.

1. a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue.

So what does it mean for me? Well, I'm not really sure. It's really confusing and scary for my dad and I. We are happy to have an answer but not so happy with the answer. Right now we are looking at treatment options. There is no cure for MS, but medication will slow progression, basically increasing the time between "attacks." As of right now, the disease is mild. We hope it stays that way.

I couldn't be more thankful for my incredible support system. These things can be really difficult without my momma by my side, though I know she is with me always. Also I apologize that all of my posts are so depressing. This was the best way I knew how to share. 

Garden

I always feel compelled to write when I miss my mom, so here I am.

Over the last few days, I read The Fault in Our Stars. It was okay (sorry, everyone), but I didn't love it. Regardless, I found myself thinking about cancer and the horrible things my mother and my family went through.

The second half of my freshman year was really, for the most part, pretty miserable. My mom was really sick, and school was my escape from watching her suffer. She gradually got worse and worse. She couldn't keep anything down, and she seemed to be in an eternal bad mood. I missed out on a lot of activities because I felt I needed to stay home with her. She didn't want to eat...or really do anything for that matter. There are a lot of days I wish I could forget, but one sticks out in my mind the most. It was an early summer evening, and my mom hadn't eaten all day. I knew she needed some nourishment, so I convinced her to let me make oatmeal. I made it with milk instead of water thinking she probably needed the calcium. When I presented her with the meal, she refused, claiming the milk would make her nauseous. Because of the medications she was on, she wasn't herself, and she threw a fit. In that moment, I felt as if our roles as mother and daughter had been reversed. I dropped the bowl and watched it crash to the counter. I think that's the day I realized just how sick she was. That was probably the day I realized I had already lost her. She died about two months later.

 When I remember her on her worst days, I try to think of the things I loved about my mom. When she was herself, she would read every night before bed. Most of the time, she would fall asleep with her glasses on and an open book in her hands. In the summer, she religiously watered all of the flowers that surrounded our home. To say she had a green thumb would be an understatement. Each evening, she would sit outside and listen to the birds, the wind, the animals...she loved our house, but she loved our backyard even more. She loved Marlo (my dog...or best friend, whichever you prefer) and let him sleep on her bed even though my dad hated it. My momma always smelled good. I don't know what perfume she used, but she just smelled like Mom. I loved to watch her fingers on the piano, and I still love to watch people play the piano. It reminds me of her. Even though I couldn't stand Pat Metheny music when she was alive, I smile when I hear it now. I still have every song memorized. I always will.

The happy memories of my mom somehow outweigh the sad, cancer-filled ones. I can't wait to see her beautiful garden in Heaven.

This is what she wanted to be played at her funeral, and it certainly was a celebration of a beautiful life:
http://www.youtube.com/watch?v=v4lnEOa3PmQ&feature=youtu.be

Bad Days

Inevitably, there are bad days.

I am officially no longer a high school student. I turn 18 in about a week. Today, I feel completely overwhelmed and really, really sad.

Summer means sun and warmth and longer days, but it also means I have a lot more time to think. There are so many things I wish I could talk to my mom about. I spent a lot of today thinking about what I would tell her. Today was one of the bad days. First of all, I'm terrified to go to college. I don't want to leave my home that is filled with so many happy memories of my momma. I'll miss my dog so much that I've honestly considered smuggling him into my dorm. I would tell her about the friends I've made this year, a few in particular that have made a major impact on my life. They mean more to me than they know. I would tell her how much I wish she could have gotten to know them because she would love them just as much as I do. Monday was Memorial Day, a holiday that always reminds me of my grandma and my mom. I would talk to both of them about boys and how confusing and irritating they can be. Girls are complicated...right. My mom always knew what to say and always pointed me in the right direction. My grandma would tell me to pretend boys don't exist and to focus on my schoolwork. (: I would tell my momma about my fears for the future. There are many things I'm unsure about, though I must remember God knows the plan. While my faith keeps me strong, there is nothing more comforting than a mother's hug...something I miss very much. I would talk to her about the things that I don't understand. Why does cancer have to take so many lives? Why couldn't we have had more time? Why is it that on certain days, you seem so far away?

Today, I feel broken in grief but I find comfort...
"God heals the heartbroken and bandages their wounds." Psalm 147:3.
"Our Lord is great, with limitless strength; we'll never comprehend what he knows and does. God puts the fallen on their feet again." Psalm 147:5-6.
"Wait for God. Wait with hope. Hope now; hope always!" Psalm 131:3.

Sometimes, when I really need her, I think maybe I hear her voice as the wind whirls through her favorite wind chimes. My wounds are still healing.

Mother's Day

Today, I wished my mom a happy Mother's Day at the cemetery.

And I cried. Usually, the big days don't get to me. Her birthday, Mother's Day, the day she died...most of the time, I make it through these days without struggling. Today was different.

I went to one of my best friend's graduation party, and on my way home I realized what day it was. I decided to go to the cemetery because it had been awhile, and I was in a good mood. I thought I would talk to her for a little while, and then come home to study. When I walked up to her stone, I was suddenly overwhelmed by the week ahead of me. I have two days left of high school, and I graduate on Sunday...without my mother. My graduation party is on Saturday, and she won't be there to celebrate with me. When I walk across the stage to get my diploma, I won't see her in the audience. She won't be a phone call away as I push through my first year of college. I stood in the middle of the cemetery and cried.

I have a feeling this week will be rough for a lot of reasons, but I have some of the best friends on the planet to help me get through it.

On Mother's Day, children are supposed to honor their mothers. Even though mine isn't here anymore and I need her more than ever, I still celebrate the bright, beautiful woman she was:

Dear Momma,

Happy Mother's Day! This is the third year you've been absent. I miss you very much, but I see you almost every day. It's been raining often, so everything is green and blooming. I see you in the flowers, and I see you in the trees. I see you in the stars at night, and I hear you in everything musical. When an oriole lands on the bird feeder, I hope it's you. I see and hear you in all of the beautiful things in my life. I love you more than I could ever put into words...always and forever.