glioblastoma

One Difficult Part of Grief: Sitting with Anger

/ crystabaier / Leave a comment

On May 3 , I will be facing the third anniversary of losing my daughter to brain cancer. About a week or so ago, I started feeling ALL of the things I feel this time of year — grief, sadness, longing, disbelieving. But fast forward to today. Today, at this very moment, I feel anger. I feel like If I was confronted by someone right now, that my 5’2′ nonviolent little self might take the person down. I feel like I could run a hundred miles, and the physicality of it still wouldn’t touch the fury. I’m not wallowing self-pity; I’m wallowing in anger that I cannot seem to work through.

My truest belief about grief is that it’s important for me to feel all of the emotions. My ability to feel things is, in my opinion, my super power. I feel comfortable naming a feeling, working through it, and then moving forward. Rinse. Repeat. Over and over until I feel better. Most days, I am rational about what I’m feeling. I understand that life is filled with challenges, and mine are no bigger than anyone else’s. But right now, I can’t get a grip on feeling furious at the world. I don’t like this feeling, but I also believe that anger is a part of the grief process. It’s normal, but it’s just not where I want to land.

Right now my anger is directed at trivial things at work, imperfect relationships, and my own mistakes and imperfections. Yet, I know that this anger stems from one thing — not the little irritations in my life, but my grief in losing my daughter at a much too young age. Fifteen year olds should not die before their parents, and fifteen year olds should not have to battle an aggressive cancer like glioblastoma.

Where does this leave me? I’m not sure. I generally try to be optimistic in the face of challenges. I try to be hopeful, even in times of despair. But for the life of me, I can’t figure out how to stop feeling mad. Tonight I went for a walk with a friend. I wrote. I read a book. In my mind, I screamed at the universe. The rage persists. The rage is just not me.

Is there an easy way to rid myself of anger?  I don’t think so.  I am confident that the only way through my anger is through it.  I have to ride it out, recognize what I’m dealing with,wrestle with it a bit, and know that tomorrow will be a better day.  But out of all of the emotions driven by grief, anger is the hardest for me to sit with.  The challenge for me is to not let this anger consume me — to continue to work to be a good wife, mom, daughter, sister, friend, teacher and human.  I believe Brene Brown when she says this:  “Anger is a catalyst. Holding on to it will make us exhausted and sick. Internalizing anger will take away our joy and spirit; externalizing anger will make us less effective in our attempts to create change and forge connection.”   I have to find a way to let my anger lead me back to joy and gratitude. 

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

/ 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

The Marriage of Grief and Depression

/ crystabaier / 1 Comment

I recently developed a new mantra.  It goes like this:  It is not my job to make people comfortable.  I don’t mean that I’ll go out of my way to make friends and acquaintances ill at ease.  That’s not really who I am.  What I mean is that I am trying very hard to be honest about myself and my life.  If that makes people feel uncomfortable, then I need to let that roll off my back.  

With that in mind, I need to tell you that this blog post is not a happy one.  I’m purposely going for honesty.  Maybe someone out there needs to hear this and know they’re not alone.  Maybe there’s someone else who feels just like I do.  Today’s topic — grief and depression.  Unfortunately, this is a topic I know well. 

A few years back, I was diagnosed with depression.  This was before my daughter Ally’s illness, before I had experienced real loss. We were dealing with some behavioral issues with my son, which looking back, were insignificant compared to what we’d later face.  But still, I was struggling.  My therapist thought I had situational depression, and he suggested I talk to my doctor about this.  My doctor then put me on a low dose of Lexapro.  For several years, I stayed on this medication, and it worked.  It helped keep me level and able to cope with life.  

A few years later, life got really difficult.  My sweet, twelve year old daughter was diagnosed with brain cancer.  My family lived in limbo for the next 3.5 years, trying to stay afloat while also living in fear of what could/would happen next.  Those years were filled with joy, fear, hope, tears, love and a deep sadness.  I stayed on meds to keep going as grief was starting to creep in; I grieved a life of normalcy for my child, for my family, and for myself.  I had constant worry, a constant sense of ‘What will happen if…?’ 

In April of 2020 the if happened.  We discovered that treatments were no longer helping Ally.  On May 3, Glioblastoma took my daughter’s life.  And that’s where real depression kicked in.  Intertwined with this depression was grief, which has been a constant companion since then.  I’ve been trying to work through my grief, take the right steps to keep my depression at bay, and still be a functional human.  I’m on meds, and I recently adjusted them as I can feel that the holidays will be hard this year. I see a therapist.  I am doing life the best I can.  Up until a couple of weeks ago, I really thought I was doing okay.  But then depression swoops in, and I’m flat on my back again.

Now here’s the part I’m a little embarrassed to share.  I like to think of myself as a strong person.  I’ve had to be during my daughter’s illness and after her death.  I feel compelled to be strong at work and when I’m out in the world.  But the last few weeks when Rich and I sat in counseling together, working through our grief, I got called out by our counselor.  She said I was “awfully tearful.”  I was furious.  Of course I am tearful.  Counseling is hard.  Grief is hard.  Trying to piece your life back together after a devastating event is hard.  I thought I had been doing so well.  I get up in the morning and go to work.  I am trying to be a kind teacher, a reliable co-worker, a loving friend.  I exercise.  I read.  I stay busy with writing groups and yoga classes and happy hours with the girls.  And yet, I’m still depressed.  I had an epiphany:  I live in a haze of blah that I can’t fully pull myself out of.  And I’m so angry that I can’t outrun the grief and depression that hangs over me.  If a friend were to tell me about his or her depression, I’d tell my friend to get a good therapist and to consider medication.  Don’t give up.  Be gentle with yourself.  Practice self care.   Why can’t I be gentle with myself?  My therapist and my doctor both suggested I should give myself grace…which is hard.

In most of my blog posts, this is where I’d try to insert a positive reflection or maybe a bit of wisdom.  But this time I can’t because I don’t have any meaningful insights.  I don’t have a solution.  I’m still in the depths of trying to understand my loss and correctly treat my depression.  I will say this:  If you are hurting, if you feel low, if you are anxious about the holidays, you are not alone.  Do not be ashamed about asking for help.  Do not feel badly about needing therapy and medication to feel better.  And do not second-guess being honest about all of this.  Life is hard, my friends.  However, life is better when you love and grieve and share with and lean on your people.  As for me, I’m not giving up.  But dang, this journey of grief and depression is a long one.  Here’s to lighter days for all of us.

”Grief is so human, and it hits everyone at one point or another, at least, in their lives. If you love, you will grieve, and that’s just given.”  – Kay Redfield Jamison

Note:   If you are struggling with depression during the holidays or any time, you can call the Depression Hotline at 1-888-771-5166.  If you want to search for a therapist near you, go to the Psychology Today website at https://www.psychologytoday.com/us.  Most importantly, if you feel suicidal, call the National Suicide Prevention Lifeline at 800-273-8255. 

The Gift of Family Tradition

/ 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. 

My Thoughts on Prayer

/ crystabaier / Leave a comment
grayscale photography of praying hands

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.