On the Bright Side

July 17, 2024 / crystabaier / Leave a comment

When I talk about our cancer journey, I usually start on December 2, 2016 — what I call D-Day. This was the day Ally had her first MRI, the day we found out she had a mass on her brain, the day we packed our bags for a week long stay at Children’s Mercy Hospital. I could talk all day about how I felt about this day and the following week that would change my family forever. However, I never asked Ally her perspective. And then I stumbled upon an old journal entry.

Can you imagine, being a 12 year old girl and wondering…Could I die? This was the first question she asked me when the two of us were alone.

Can you imagine the fear and absolute solemnity of the situation for sweet, optimistic Ally?

Can you imagine facing a brain surgery and a hospital stay with more courage than most adults could muster?

Here is the story, in Ally’s words. She wrote this second semester of her 7th grade year, a few months after getting back to school; she was probably going through treatment when she wrote this. Ally was a bad ass, as the piece below will show.

This is my view on what happened. But it’s not going to be that easy. It all started maybe one, maybe two months ago at basketball practice. I was having some bad headaches, so I was unusually tired. I told my parents about what was happening, but they just gave me Ibuprofen and told me to shake it off.

The headaches kept happening, so I had to go to the doctor. They said it was a “menstrual migraine,”but the headaches still kept happening. Eventually, I had to get an MRI scan. A few days later, on a Friday night, I found out I had a tumor the size of a baseball in my brain and had to have brain surgery. So I packed my bags and headed to Children’s Mercy Hospital.

When I got there, I was so disappointed in the “stupid” tumor in my head. It wouldn’t be for another TWO days before I would have my first of two surgeries on my head. It got MISERABLE. Over the course of one week, I must have moved rooms five times!

The nurses were super nice about it, though. One of the nurses, Hannah, made me a really cool Harry Potter sign with my name and a Grindelwald’s sign on it. I got lots of love. My parents counted the number of visitors, and I got over 34 visitors! Family, friends, church friends, and other people who know me came. In fact, I am still getting gifts. One of my neighbors even planned a meal train for my family! Even Mrs. Schmitz, my 2nd grade teacher, made her famous blueberry muffins for me! I got a dozen (but on two trips).

Surgery day. Sooo exciting. I was ready to knock this baseball-sized tumor out of the park! But, they only removed a part of the tumor, so I had to have a second surgery due to it being so tough to remove. That Tuesday, I got the same hole cut in my head for ANOTHER brain surgery.

After I got out, I got really upset. I felt like I was going INSANE! But, on the bright side, I was feeling tons better within a day of the surgery, probably due to the poop emoji pillow I got. I had some headaches after, but I was mostly good. In fact, I was so good I was allowed to walk around! There were many opportunities for me to walk around, but I was kind of lazy. After all, I just had two brain surgeries.

The week was passing by, and we were STILL waiting for news from the doctors. I was getting used to being in the hospital. The food, the IV, the needles for getting blood drawn, etc. I got fed up with it. I kept getting mad, then sad. Let’s just say I was feeling conflicted. On my last day, I was pumped up about leaving. We packed up at about 3:00 p.m. and left at about 5:30. When I got home, we had a nice chili and cornbread dinner. The hospital was a journey to remember.

When I read this, I hear some worry and frustration, but I mostly see persistence. Ally did not give up on life just because of a grim diagnosis. (We didn’t know until leaving the hospital that she had glioblastoma, and I can’t remember how many details we gave Ally at the time about the kind of cancer it was.) Ally knew she would be fighting cancer, and because of her vivacious, hopeful spirit, she fought glioblastoma for close to three and a half years — much longer than many folks are able to fight. And though Ally’s tired body succumbed to cancer on May 3, 2020, her legacy of optimism, grit, bravery, and hope lives on.

Note: Because this was a stream of consciousness journal entry, I did add paragraphing and correct maybe two spelling errors. Aside from that, this is Ally’s telling of her story. And the poop emoji pillow she mentioned — that was a very beloved gift from her Aunt Katie and Uncle Brandon.

The Ally League…a Sock Drive and so Much More!

October 31, 2022November 1, 2022 / crystabaier / Leave a comment

This past Sunday morning at church, we worked on a service project during our Adult Education hour. The project was a sock drive for the Ally League, an entity created by my sister back in 2019 to show support for my daughter Ally who was fighting glioblastoma. Ally was a great kid, a lover of all things comic book related (preferring DC over Marvel, of course) and a warrior. She remains the strongest person I know. And her optimism, despite a harrowing diagnosis, continues to inspire many, myself included. After Ally died in May 2020, the Ally League decided to ask for donations for colorful, patterned socks to give to kids at Children’s Mercy Hospital. You see, Ally loved socks, loved kids, and loved helping others. She would be thrilled to see that we celebrate her life by donating socks to kids fighting illness just like she did.

But back to the project. As we were separating and counting socks, I was asked to speak about the Ally League. I hadn’t prepared anything, although I do better speaking off the cuff anyway. I’m a teacher and writer, so finding the right words is usually not a problem. But I was feeling particularly tender this morning, and when I was asked to share about the Ally League and our sock drive, I cried. I had to pause and collect myself. I tried to convey the meaning of the Ally League and why it is special to me, but I don’t think I did it justice. Instead, I came home and decided to write about it. Reflect. Take time to say what I need to say in the way I want to say it. Here goes.

In August of 2019, my sister created an Ally League Facebook page https://www.facebook.com/allyleagueforever and thus the Ally League was born. The Ally League was a place where I could go to share information. It was a place where we could rally the troops in supporting Ally’s fight. We first used this page to form a team for Head for the Cure, an organization that raises funds to fight brain cancer.

Head for the Cure 2019 was the absolute best. Ally was still with us, radiating hope and positivity, inspiring her tribe. We had a crazy number of folks — church friends, neighbors, my own friend group, family, Ally’s besties — all come out in support. Our youth pastor Chuck brought communion, and those of us who wanted to lined up to partake before the race. Ally was in a wheelchair, and I was fully prepared to push her the 3.1 miles. I was grateful for the opportunity to raise money toward this horrible disease and honor my sweet girl.

Before the Head for the Cure race, we hugged, celebrated Ally, silently cursed brain cancer, and surrounded Ally with love and hope and joy. Unfortunately, right before the race, a rain storm rolled in. Instead of walking the race, we all took shelter. My family and several friends headed to Einstein Bros to enjoy a bagel and a little fellowship. (After all, Ally did love her carbs.) I’m not sure the walk itself was important that year. It was the gathering of people who loved Ally, the circle of support, that mattered the most. This was when the Ally League was formed. And though Ally is gone, our group remains.

In May 2020, after a long and brave battle, Ally succumbed to glioblastoma. I was shattered. And yet, I wanted to do something positive. I wanted to honor Ally’s legacy of love and kindness by gathering crazy, “jazzy” socks in Ally’s memory. These socks would go to other kids who were hospitalized — kids who needed a bit of hope. My initial goal was to collect 200 pairs of socks. We ended up collecting nearly 4,000 pairs. To me, each pair of socks we received represented a deep love for Ally and for our family.

Fast forward to 2022. The Ally League held our 2nd sock drive. (I figure we’ll shoot for doing this every two years.) We ended up with 163 pairs collected at my school with an additional 88 pairs being collected by my friends at St. Andrew Christian Church. That’s a total of 251 pairs of socks.

This sock drive matters to me for a number of reasons. First of all, Ally loved her socks — Harry Potter socks, mismatched socks, caped superhero socks. Crazy socks exemplify Ally’s bright and quirky personality. This sock drive also represents hope. Each pair of socks could potentially be a bright spot in some child’s day — some child stuck in a dreary hospital needing a little pick-me-up. It does not matter to me whether we gather 300 pairs or 4,000 pairs of socks each time we hold our sock drive. What does matter to me is that we keep Ally’s spirit alive, we celebrate her strength and positivity, and we continue to help other children who are hospitalized and fighting illness.

The 2020 Stats

We donated 300 pairs of socks to Children’s Mercy Hospital in November of 2020.
We donated 130 pairs of socks to the Ronald McDonald house in Kansas City, Missouri.
We donated 30 pairs of socks to KU Pediatrics.
We donated 250 pairs of socks to Wesley Children’s Hospital in Wichita, Kansas.
We donated 810 pairs of socks to Mission Southside in Olathe, Kansas.
We donated 1,532 pairs of socks to the Overland Park, Kansas, nonprofit called Kuzidi. Kuzidi is in the process of creating care kits for displaced children, and there will be a pair of socks as well as other comfort items in these kits.
At Christmas-time, we gave socks to students and teachers at the school where I teach, so around 170 socks for students and 40 socks for teachers and support staff. (My school is a Title 1 school, and my students were thrilled with this unexpected gift.)
We donated 150 pairs of socks to a teacher at Children’s Mercy Hospital who planned to personally pass out socks to her students who were hospitalized.
We donated 482 more pairs of socks to Kuzidi.
The first Ally League Sock Drive (from 2020 – 2021, as socks continued to trickle in for months) totalled 3,994 socks. Wow!

The 2022 Stats

Edgerton Elementary donated 163 pairs of socks. These came from my co-workers and even a few former parents.
St. Andrew Christian Church, my church home, donated 88 pairs of socks, then my church family helped me pin all 251 pairs of socks. (For each pair of socks we donate, we include a short note about Ally’s life.)
AMR of Kansas City held a sock drive. Their socks have not yet been counted.
I intend to donate these socks to Children’s Mercy Hospital and to the Ronald McDonald House sometime in November.

One Last Thing

Here’s a link to a story about our very first donation. Sock Drive 2020

Bright Spots

September 29, 2022October 1, 2022 / crystabaier / 3 Comments

The universe is filled with mystery — with things I will most likely never understand. Here’s one example we’ve all seen play out in the world: Sometimes good things happen to bad people, and sometimes bad things happen to good people. This sounds like a trite expression, but it’s one I’ve found to be true. You see, when my daughter Ally was diagnosed with glioblastoma, I didn’t blame God, even though that is a reasonable reaction. Instead, I attributed her illness to the randomness of the universe. Or maybe, to be a bit more coarse, I just understood that “shit happens.” Even the kindest of humans get cancer. Even the most loving people die much too young.

That being said, sometimes in the midst of a really difficult situation, a person is able to find some bright spots — small blessings that were gleaned from said horrible event — small gifts from the universe. This is true of my daughter’s illness and death. I know that losing Ally is the worst thing I’ll ever have to go through, but at the same time, I’ve met some amazing people through our family’s horrific journey.

I remember walking into the KU Cancer Clinic the first day Ally had radiation. It was a horrible day. I tried to be optimistic and stay strong for Ally. Her dad had to leave the room. And Ally — my amazingly tough girl — remained steadfast and strong. Afterwards, as we were leaving, we were stopped at a check out desk. The lady behind the desk handed Ally an envelope containing a dollar bill. You see, a donor whose wife had struggled with cancer noticed the number of kids who were fighting this disease too. This pained him. He decided to donate money so that each child received a dollar each time they came for radiation. He wanted to provide encouragement and hope. I don’t know this man. I’ll probably never meet him. But I admire him and his kindness. I feel like his seemingly small act is something that will impact me forever. I want to dole out acts of kindness like this anonymous donor did.

After Ally died, I’ve been able to connect with several other mothers who, like me, lost a child. I know that this connection probably sounds sad and maybe even morbid. But I feel like we’re all in the same club — the club that no parent wants to be in. If we must endure this loss, we may as well survive it together.

This summer, I was invited to speak at a children’s hospice inservice along with several other parents. We were talking to hospice nurses (angels on Earth) about our experiences during our child’s illness and death. It was a hard, but important thing to do. My words could potentially bring change to a program that will impact mothers just like me. My social worker friend Karen accompanied me so I didn’t have to do this alone. I listened to other stories, similar to my own, and I spoke about my beloved Ally, her life, and her time in hospice care. This event, even though challenging, was also cathartic. Afterwards, a mom asked if she could give me a hug. We hugged tightly, and without words, we shared a poignant connection. I will not forget this mother, even if I never physically see her again. I will not forget her daughter, even though I never knew her.

Recently, I met another mother who had lost a child. This is a new co-worker who I predict will also be a new friend. This woman overheard me talking to another parent about how I’m holding up. A day later, my co-worker came to me and asked if I had lost a child. She then said that she had lost her sweet son nearly 25 years ago and asked if I’d like to get together and talk.

This week, we met at a coffee shop. I’ve only known this woman for two months, and it feels like it’s been a lifetime. We have shared experiences — trauma, grief, mom guilt, and finding joy despite our circumstances. Again, it probably sounds weird to befriend another bereaved mother, but to me, these friendships feel like a small gift from the universe. There is another mother who feels what I feel and stands in solidarity with me through my pain.

I am certain that my daughter’s life and death have changed me. I’m not the person I was before she was born, and I’m not the person I was before her cancer diagnosis. But in some ways, I’m better. Stronger. More loving. More joyful. I understand the value of the small but significant gifts the universe has offered up to me, and I am grateful…for the small things, for friendships, for the short but significant life of my daughter.

How to Help a Friend Through Grief

February 20, 2021February 20, 2021 / crystabaier / 4 Comments

a woman rests her head on another person's shoulder

Yesterday, I left work early to attend a grief seminar. Yes, I’ve become that super fun person who talks about grief, goes to grief events and then reflects. But when you’re sitting in grief, it’s something that’s on your mind constantly. And this seminar got me thinking.

I used to be awkward about grief. (To be fair, I think we’re all awkward about grief — at least in the beginning.) When a friend lost a parent or spouse, I didn’t know what to say. I had the vague sense that saying SOMETHING was better than not acknowledging the loss. But I’m pretty sure up until this last year, I didn’t know WHAT to say or even what to do. I have some residual guilt about this — some situations that I didn’t come through in the way I would want to today.

In May, I lost my sweet daughter Ally. Prior to her death, she’d had a long battle with cancer. During the three plus years of her illness, we had so much love and support. And yet, even before my daughter died, our family was grieving — grieving the change in our family, the loss or normalcy, Ally’s loss of a typical adolescence. I’d like to speak to how to help a friend who is grieving. I know because this is what has helped me.

Acknowledge the loss. Don’t tiptoe around your friend’s loss. It’s not a secret. They are thinking about this loss 24/7. It’s okay to express how very sorry you are. And it’s okay if the only words you can utter are “I’m sorry.” I’d also suggest if the words won’t come at all, a hug speaks volumes. Your presence is more important than finding the exact, right words because there are no exact, right words.

Bring food. Bringing food and buying gift cards to restaurants are tangible things you can do when you don’t have the right words. These things tell a friend, “I love you. I’m with you. I want to help you.” And during a time of grief, cooking is a burden. Food always helps.

Send cards. I can’t tell you how much cards brighten my day, and I’m still getting cards even now. I have stacks of cards from friends. I keep these because they are constant reminders that I am loved. Ally was loved. People are thinking about our family, even months after our loss.

Check in with your friend. Call. Text. Go knock on your friend’s door and drag him or her out for a walk. Make sure your friend knows he or she is not alone.

Talk about the person who died. I know people who are uncomfortable talking to me about Ally. This comes from a place of caring; they don’t want to make me sad. But you know what? It is cathartic to talk about my daughter. She was a beautiful person, and talking about that is a happy reminder of who she was.

Now, let’s address some things to avoid.

Don’t ask a person to talk about their “stage” of grief. I call bullshit on the stages of grief anyway. It’s not like grief is a neat little progression of emotions; grief comes in waves of thousands of little feelings hitting you all at once. I’ve been angry. I’ve been depressed. I’ve even been joyful. (Yes, I know that sounds weird — but joyful for Ally’s life, for friends, for the support we’ve been given.) I’ve felt guilty and uninspired. But these feelings ping from one to another constantly. Let your friend express how he or she is feeling instead of you trying to force a conversation about the stages of grief. Try to listen and understand.

Don’t share platitudes or meaningless religious philosophies. “God has a plan. She’s in a better place now. Everything happens for a reason.” These statements may be comforting to YOU. You may believe these things to your core. But these statements feel utterly ridiculous to a person who is grieving. (Note: I have had people I love and admire say these things. I understand. People don’t always know what to say. So I’m not monumentally upset about this. I’m just saying that if you could avoid these platitudes, it would be a kindness to the griever.)

Don’t have a time frame in your head as to when your friend’s grief will magically be vanquished. Grief is a lifelong friend. I’ve only been grieving my daughter for nine months, and I can tell you that I can’t imagine a time when grief won’t be sitting right on my shoulder. I’m hoping my grief lessens, but I don’t think it goes away. And I’m not sure I want it to leave me completely. My grief is a symbol of my great love for Ally. I don’t want my love for her to ever be extinguished.

Finally, don’t beat yourself up if you do handle a friend’s grief imperfectly. We are all learning and growing. I myself have huge regrets. I know I could have showed up for friends better as they grieved. I just didn’t know how. I didn’t understand. So when you know better, you do better. And that is my goal moving forward — to be a better friend to fellow grievers.

I want to end by saying this: A person who is grieving will need constant support and friendship. I’ve been blessed to have a tribe of people who’ve lifted me up and kept me going. Recently, I was talking to a friend. We were sitting in her car, getting ready to go into the gym to work out. I started crying, thinking about and missing Ally. She grabbed my hand, held it tightly, and said this: “Crysta, there is no expiration date on how long I’ll listen to you talk about Ally. We’ll be in a nursing home, and we’ll still be talking about your sweet girl.” Friends, that’s what we all need in this crazy thing called life — people who will love us through hard times right up until the end.

The Gift of Family Tradition

February 7, 2021February 7, 2021 / crystabaier / 3 Comments

I was a bit of an ungrateful teenager. I was annoyed by my parents, and I pushed back quite a bit throughout high school. I thought my family of origin was over-the-top, not normal, not like my friends’ families. I’m sorry, Mom and Dad. I was a stupid, naive, insecure kid. And now I really appreciate our family’s uniqueness. I was talking to my therapist recently, and a light bulb went off in my head: I had (and have) pretty amazing parents. My parents’ biggest offense — they wanted to spend time with me at a time when I just wanted to be free. I grew up with love, safety, security, and meaningful family traditions. I was lucky.

I was thinking about all of this as I was disassembling my Christmas tree. (Don’t ask when, friends. This is the year of Covid. I may have taken my tree down embarrassingly late. No judgment, please.) I was taking down the ornaments, one by one, and examining them. Many of these are new to me this year. I was gifted a lot of really special ornaments this year. Lori gave me a Harry Potter-style wand ornament; Andrea gave me a Noel ornament in honor of Ally. My family members made handmade ornaments to remember Ally, and my principal gave the whole staff a handmade ornament. I was looking at these and thinking about the amazing people I have in my life. Each of these ornaments are special and will hang on my tree for years to come. Then I remembered how ornaments had always been special in my family.

When I was a kid, my Gram and Gramp decided that they wanted to give the grand kids a special Jan Hummel Christmas ornament each year. I loved those ornaments. Although they were fragile and we had to be very careful with them, I loved adorning our family tree with the Hummel balls. Each year, we’d make a special night of putting up the Christmas tree. Mom and Dad liked for us to think of a memory from the year of each ornament. For example, 1976 was the year that my sister was born. 1990 was the year I graduated. We talked about the good things that had happened to our family. Afterwards, my Dad — the world’s biggest kid at Christmas-time — liked us to turn off the lights in the room and lie down under the tree. Together, we gazed up at our creation. The ornaments. The sparkly lights. The memories. My dad was probably tearing up, and my sister and I were probably anxious to get to the telephone and call our friends. But for a brief moment, time stood still and our family was together — still, content, and connected. My sister and I learned about love and gratitude from those nights of putting up our Christmas tree as a family. We learned that we are people of connection; we are meant to be together in good years and in bad.

Since I’ve had my own family, I’ve tried to make putting up the Christmas tree a special event as well. But as you all know, when you create your own family unit, traditions morph into what makes sense for your own family. In my own little family unit, we’d drink Coke out of bottles, listen to Christmas music and put up ornaments. Rich would usually assembly the tree and leave most of the hanging of ornaments to the kids and me. My kids loved Christmas. Ally especially loved Christmas. This year, the first year without Ally, was a tough one. And yet, I had hoped to make this Christmas meaningful, or at least bearable, if I could.

I decided that the best way forward was to let Joel and Rich do what felt right in their hearts regarding the Christmas tree. In fact, I waited a while to assemble it as I wasn’t sure I’d be in the right headspace to put up a tree after this horrible year. But I talked to Joel, and we decided to do it — late, but better than not at all. Joel agreed to help. I wasn’t sure if he’d want to participate. But he thought we should keep the tradition.

Joel and I put together our artificial tree with a few laughs as we had some assembly mishaps. We added lights. And then we brought out the ornaments. I bought us Cokes in bottles, which Joel and I enjoyed together, and then we talked as we took out each ornament and hung them. There were the ornaments that the kids made. Ornaments with pictures of Joel and Ally when they were younger. There were our favorite ornaments – the ornaments my Dad decorated for the kids, the goofy KU ornament that we put up every year even though we’re KSU fans. And then there’s THE ornament.

THE ornament is the one Ally hated the most. It’s the ornament with only three names — Rich, Crysta and Joel. This was the first ornament we bought in 2001 when we became a family of three. Ally HATED that ornament; she hated thinking of a time when she was not a part of our family. Every year she was alive, we had words about this ornament, and we always ended up keeping the ornament but hiding it on the back of the tree. There were years when Ally slyly threw the ornament away as she ranted about the injustice of having a time without her around. Joel and I would retrieve it from the trash can and hide it on the back of the tree. And yes, if you know my son Joel, you know that he teased her about this for years. “Hey Ally, look at this ornament. This is a good one!” I can hear the whole thing go down now.

But this year, when we got to this ornament, it brought us both tears and laughter. We both agreed to hang the ornament on the back of the tree. And in that way, Joel and I felt Ally’s lasting presence. We talked. We kept to tradition. We remembered to be grateful for all of our beautiful and imperfect ornaments, our family memories, our sweet Ally.

Though I miss Ally with all of my being, I am so glad we decided to put up our Christmas tree in her absence. The simple ritual of putting up the tree helped remind me that, even in my grief, I’ve been blessed with so much in my life. I’m glad we were able to continue a family tradition — even during this difficult season. Thank you, Mom and Dad, for teaching me the importance of family and tradition. And thank you, Joel, for giving me some mother-son time when I needed it the most. You’ll never know how special this small ritual was to me.

*Note: I mention my daughter Ally a lot in my blogs. She died in May 2020 of glioblastoma. She was 15. I will most likely write more about this when my mom heart feels the time is right. I wanted you to have a little backstory to better understand my journey.

December 2nd Can Suck It OR Days to Remember: You Pick the Title

December 1, 2020December 2, 2020 / crystabaier / Leave a comment

Dear readers, this is practically a Choose Your Own Adventure post because (lucky you) YOU get to choose the title, maybe even the main theme. Should this be called December 2nd can Suck It? Or do you prefer to read a post titled Days to Remember? Maybe it depends upon the day you’ve had today or how tired you are. Or maybe it depends upon your inclination for pessimism vs. positivity. Maybe it depends on how you look at unforgettable dates. Either way, you get to pick. What is my blog today really about? What’s the appropriate moniker?

I’m writing this because a Facebook memory popped up today. Here’s what the memory said: Dec. 1, 2016: Feeling worried.

I remember that time in my life. I was worried. More than worried, to be honest. You see, four years ago on this very day, my daughter Ally was scheduled to have an MRI the next day (December 2nd) as a precautionary measure. We had seen the pediatrician earlier in the week about her recurring headaches, and our doctor ordered an MRI. I assumed everything would be all right, but still…I worried because that’s what moms do.

Flash back to today. After reading this post, I got to thinking about the weird days that we can’t help but remember. Days that stick with us even though time has passed. Some of these days are good. Some are heartbreaking. And yet we can’t get these dates out of our heads.

Here are the days I remember:

July 3: My grandpa died. I was not prepared to find my parents and my sister returning home to tell me that Gramp’s heart had stopped.

August 1: My grandma died. Gram lived with my family for many years, and this was a hard blow.

December 23: Rich got down on a knee and asked me to marry him. That was one of the best nights I can recall, even though I’ve now forgotten the proposal itself.

December 2: We found out that my daughter had a “mass” on her brain and we should immediately head to Children’s Mercy Hospital. We quickly packed a bag as surgery was imminent for Ally.

July 1: Joel was born AND Rich’s dad died. Same day. Same year. The universe never ceases to teach about joy mixed with sadness.

June 28: I delivered my sweet baby girl. I remember feeling so happy to be a mother of two.

July 10: This is the day CMH told me Ally’s cancer was terminal. I was alone at the hospital with Ally. Rich was traveling. One of the three worst nights of my life.

April 3: This is the day we knew for sure Ally would not get better. Up until then, I was so sure we’d find a way to beat this thing.

May 3: Ally died. And the universe again wanted to teach me about joy mixed with pain. We lost our beautiful, kind, happy, beloved daughter. But at the same time, her suffering ended. She was “read into heaven” by her two best friends, and she died listening to Harry Potter, her favorite book series.

See what I mean about dates? They get me every time. These dates sneak up on me and remind me of the most deeply meaningful moments in my life. Sometimes I feel like I’ve been hit in the gut. And sometimes I laugh as I cry. Sometimes I brace myself for the pain that resurfaces no matter how much time has passed. I understand at my core that life is a mixed bag filled with happy times and great losses. Still, I will forever wish to shout to the void, “Suck It, December 2nd!” It’s a day that I wish I could undo, omit, recant. I can’t, and I know it I can’t. Going forward, December 2nd will always represent a shift in my life. I am no longer the version of myself I was before Ally’s diagnosis. I am sadder, I am wiser, and I am trying to be kinder. I am more aware of the value of each and every day, ordinary or extraordinary, happy or sad.

30 Things

November 30, 2020November 30, 2020 / crystabaier / 1 Comment

Today is November 30, the last day of a month that many people spend reflecting on the blessings in their lives. For me, November was the 6th month of living life without my daughter. So in ways, November has been hard for me. And yet I’ve found that my own great loss — the loss of my favorite girl on the planet — makes my gratitude feel bigger and more profound. It’s a kind of gratitude that starts in my heart and pulsates outward. It’s a gratitude meant to be shared. So here goes.

I’m creating a list for you, and I’m calling this list 30 Things. It’s basically a list of 30 things that kept me going during this difficult year. It’s meant to be a love letter to life, a love letter to my tribe, and a way to show you how I experience both joy and grief. In fact, I think now that grief and joy are intertwined. You can’t have one without the other. And maybe that’s the beautiful oxymoron of our life on this planet.

30 Things…in no particular order (except for maybe #1 and 2).

I’m thankful for Ally. We had the kind of mother-daughter relationship that I had always hoped for. We didn’t get to have the longevity that I wished for, but still, I have the most wonderful memories of time I spent with Ally. Ally was smart, kind, funny, and uniquely herself. I am thankful every day for getting to be Ally’s mom, even on the hard days when we fought her cancer together. Even though I wish daily that her cancer journey had ended differently, I would not trade my fifteen years with her for anything.
I’m grateful for becoming a mother, for having two children raised in the same way, but with completely different temperaments. Joel keeps me on my toes. He banters with me and makes me laugh. And sometimes makes me want to pull out my hair. Ally supported my crazy whims and was so proud that I was a teacher and her mom. She loved me unconditionally, and that itself is a gift. I wasn’t sure when I was younger if I wanted to be a mother or if I’d be a good one. I’m sure glad I took the plunge. I am softer (and yeah, sometimes a little crazier) because of my children.
I am thankful for my parents. They were my first and best supporters. When I wanted a pink playhouse, my dad made me one. When I wanted a one-of-a-kind prom gown, my mom sewed me one. When I was first teaching and crying every night because I thought I sucked, my mom was the first to come over, sit with me on the couch or drag me out for a Sonic drink. And now, although they don’t always have the words, they still show up for me when I’m having my saddest days.
I’m thankful for my sister. I cannot tell you how much Jaime has supported me through life and through this year. When I was in high school, I went to Girls State one summer. I was literally just gone for a week — barely enough time to even miss me. During this time, my sister wrote to me and included the lyrics to “Wind Beneath my Wings.” Even then, my crazy little sister had my back. Friends, this same pesky, blonde-haired sibling of mine who I tormented back in the day has stuck with me in the best and worst of times — through the R.C. years (personal joke), through weddings and college and having babies. When I knew Ally’s time was nearing an end, the hospice nurse told me to call someone to be with me. I called my sister. Sisters always come. They always know. And my sister — well, if you know her, you know there’s pretty much nothing that she can’t accomplish.
I’m thankful for the power of music. After Ally died, I started playing the piano again. Being in my piano teacher’s house, relearning the notes, playing songs with meaning — these things all bring me a little peace. And when I want to escape or recall my past, I go to my favorite bands for inspiration and solace.
I’m thankful for my job. For the past few years, I’ve had to miss a lot of work so I could care for Ally. I was glad to do it, and I will always be grateful for this time. While I was home, my work family helped my substitute in many ways and also encouraged me to put family first. They encouraged me, brought meals, and showered Ally with gifts. After Ally died, I was able to return full-time to my job as a librarian/computer teacher. Even though I’m teaching in a global pandemic, the work I do fills me up. It’s hard. There are tough teaching days. But I love what I teach, who I teach, and who I teach with. I have been with many of these kiddos since they were in preschool, and I have worked with many of my co-workers going on 15 years in May. I know that I am lucky to have a job I love.
I am grateful for Nancy, Ally’s hospice nurse. She helped our family through the toughest of times, and she shared with me WHY she became a pediatric hospice nurse. I admire this woman to the moon and back and couldn’t have gotten through April and May without her.
I’m thankful for my in-laws. They love me like their own, and I’m blessed with many bonus siblings. But I’m thankful most of all for their gift to me — Rich. The past few years haven’t been easy for our family. It is hard on a marriage to watch your child suffer and know that you can’t fix it. But Rich has been a shoulder for me to cry on, a source of laughter, and a friend. When I returned to work this fall, he took to cooking nearly every night as I was wiped when I got home. He encourages me to write and exercise and spend time with friends. He’s a good man and father and husband.
I’m thankful for the wonderful escape that books provide. Books offer me knowledge and distraction, a soft place to go to when I’m struggling.
I’m grateful for my friends and neighbors in my cul-de-sac. We have a pretty great crew of folks here, and we enjoy hanging out. And how else would I get sugar for a recipe when I’m too lazy to run to the store?
I’m grateful for my “oldest and dearest” friends from high school and college. K, I know you hate this wording, but it always makes me smile. And of course, by “oldest” I am speaking in terms of longevity.
I’m thankful for the cards that still pop up in my mail. Thank you for never letting me feel alone.
I’m thankful for my bonus daughters, who check on me regularly and take me out for coffee. Ally would be proud of the kindness you show me. My door is always open to the two of you.
I’m grateful for yoga. Right now this is an activity that gets me out of my head and lets me feel good and strong and whole.
I’m grateful for the many friends who have walked with me — in life, through our cancer journey, through my grief. I love you all.
I’m thankful for the Foo Fighters…because, you know, I love them! Listening to Dave, an authentic lover of music, does make my heart happy!
I’m thankful for finding the Saki Lounge this year, a little place in Olathe that makes the best, prettiest plates of sushi around. And I’m thankful for a special lunch there with Laurie, Liv and Ally!
I’m grateful for Joel’s success in the military and at KSU. I’m happy every day to see that he’s found his own tribe and he’s growing into the man he’s meant to be.
I’m thankful for my hair stylist. She’s outspoken and smart and fun to talk to, plus she takes fun risks with my hair. It’s like therapy/coffee with an old friend every time I go see her.
I’m thankful for writing, which allows a place for my thoughts, joys and heartaches to land.
I’m thankful for my “book club” — a wonderfully eclectic group of women who’ve kept me sane the last few months. We’ve read books, tackled short stories, drank some wine, played trivia, and Zoomed just because we wanted to talk. I’m glad we formed this group!
I’m thankful for my church home, St. Andrew. This has been our home since Ally was a baby, and there is no place more peaceful than its grounds or its sanctuary. I truly love the building and the people.
I’m thankful for New Girl and Zoey’s Extraordinary Playlist and Gilmore Girls. These shows represent comfort and escape, and the women in these shows are my quirky, TV wannabes. Lorelai, you know we would be besties if you were real!
I’m thankful for my extended family who have checked on us, donated to causes Ally loved, and supported us through our cancer journey and our loss. I’m not sure if I’ve told you enough, but Joel and Rich and I love you all and appreciate all that you’ve done.
I am grateful for all things girl-power and Wonder Woman because they remind me of my sweet girl.
I am thankful for the times I’ve had with Joel this year — riding in his car, joking around, watching a show. He has become protective of me, and whenever I get sad, he immediately comes and hugs me or squeezes my hand. I love my boy.
I’m thankful for mornings when Joel is asleep. He can’t see me sneak into his room and look at him. He’s 19 — practically a man. But when he sleeps, I still see the three year old boy who loved to read in the closet and snuggle with his mom.
I’m thankful for Bentwood Elementary School, California Trail Middle School, and Olathe East High School — places that have supported my kids and enriched their lives. We have built lasting relationships with some of the most amazing teachers and administrators. These schools will forever be a bright spot in my kids’ upbringing.
I’m grateful for Dr. Max, our first oncologist. To be honest, I hated her at first. You would too if she told you that your beloved child had aggressive brain cancer. But she took great care of my girl and still checks in on my family. I will never forget what she’s done for our family.
Finally, I am thankful for all of YOU. Chances are, if you’re reading this, you are part of my tribe or you know someone in my tribe or you’re morphing into my tribe. Thank you for the million little things you’ve done to support us and show us love. Texts. Calls. Cards. Hugs. Meals. Walks. Cries. Laughs. Everything.

“Joy and grief are never far apart. In the same street the shutters of one hosue are closed, while the curtains of the next are brushed by shadow of the dance. A wedding party returns from church, and a funeral winds to its door. The smiles and sadness of life are the tragi-comedy of Shakespeare. Gladness and sighs brighten the dim the mirror he beholds.”

-Robert Aris Willmott

My Thoughts on Prayer

September 18, 2020September 20, 2020 / crystabaier / Leave a comment

I read a friend’s post on Facebook the other night, and I was immediately compelled to respond. He wrote: “Can you pray for someone without being religious?” This got me thinking about the nature of prayer and where I stand on this issue.

The concept of prayer is troubling to me. I grew up (mostly) in the church, and I grew up praying. I knew how to recite The Lord’s Prayer when I was five or six. Back then, my understanding was that you pray to God for forgiveness, or share your sins when you pray. Prayer was like a conversation between you and God, and sometimes God was like your parent more than a friend.

Many people I know today really, truly believe in the power of prayer — the power, that is, to change the outcome of a difficult situation. I am not mocking this position. I wish I could believe this. I’ve recently gone through a pretty tough life event, thus my thoughts on prayer have changed. Today, I feel that expecting prayer to magically solve a problem is negating the true power of prayer.

Lately, when I do pray, I don’t talk of sins or forgiveness or any of that. I figure if there’s a higher power out there, he/she/it knows what I’ve been up to. He/she/it knows I’m trying to be a decent human and that I also make mistakes. Instead, I just talk. I express gratitude. I ask for help or strength or compassion. I never ask for things.

I don’t like to throw around the term “I’m praying for you” because it seems insincere — at least when I say it. I may not “pray” for you in the traditional sense, but I will send you all the love and good vibes I have. I will come visit you in the hospital. I’ll text you and see how you’re doing or take you out for coffee. I’ll bring over a meal. This is because I think prayer without action is worthless. Mindless prayers to a God who can’t control the outcome anyway seems pointless. People who offer “prayers” but can’t even bother to text you to check on your welfare seem inauthentic. I know that for many Christians or spiritual folks, this seems harsh. But let me explain.

On May 3, I lost my favorite little person. I lost my fifteen year old daughter. I had hundreds of people across the country, people I knew as well as strangers, praying for her. I prayed. My church prayed. Her friends prayed. But still, cancer would not desist. Prayers didn’t work — at least not in sparing her life.

During this challenging time, I didn’t always pray in the way that I did as a child. I didn’t ask for tangible things. But I did pray for strength. I prayed for her to know she was loved. I told God or the Universe or the Divine — whoever is out there — that I was grateful for the love and kindness of people who were supporting us through this challenging time. I prayed for peace — for my daughter and for our family. During this time, instead of just praying, people brought food. They sat with us. My neighbors walked with me every day for several months. Friends called and texted and emailed and sent cards. These kindnesses were all forms of “prayers,” even if these prayers aren’t what we were taught about in Sunday School.

Prayers are more than just words: prayers are actions. Prayers are acts of solidarity, support, and empathy — love sent out into the universe on a person’s behalf. So back to the initial question: Can you pray and not be religious? Here’s what I think: Yes. Absolutely. Because sometimes even the smallest gesture is a prayer, letting you know that you are loved and you are not alone.

Crysta Clear

How I see the World

cancer