Bright Spots

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.

Family Matters

It was 8:15 on a Tuesday night, and I’m leaving dinner with a friend. I noticed that I missed a call from my dad. My parents are at the age where I’m both grateful for getting to talk to them regularly and worried when I get a call. So as I drove home, I called my dad back to see what was up.

After answering, Dad switched over to the speaker phone so I could talk to them both, and we started talking about our day. Then, like many nights, our conversation reverted back to Ally — my sweet daughter who died in 2020. We talked about losing Ally, but we also discussed the world, grief, age, and how sometimes life doesn’t turn out as we hoped. It could be the cocktail I just had with my girlfriend or maybe just the wisdom of growing older, but I felt acutely aware that our relationship is rare – that not everyone can say anything to their parents. That night, I felt especially grateful. I know I am lucky to still have both parents, and I’m lucky to have parents who love me unconditionally. More than that, as I was hanging up, I could hear love and pride in both of my parents’ voices. Even though I’m a grown woman, it still gives me joy to make my parents proud.

Readers, I’m sure you’d all agree that family is not always easy. I love my family to death, and sometimes they (still) drive me crazy. As a teenager, I felt like we were fairly dysfunctional. And yet as I’ve grown up, I’ve seen some truly dysfunctional families. I know now that mine is only moderately dysfunctional. (Kidding/not kidding!) I feel badly that when I was growing up, I had this inner voice telling me that my family was “wrong.” We didn’t have enough money. We didn’t have the right clothes. We didn’t do the right things. For instance, my Dad wore mismatched running attire when we jogged together — often by a “cool” friend’s house. Thirteen year old Crysta was mortified. You know what 50 year old Crysta would say to these notions? Bullshit. That’s right. I call bullshit on my adolescent views on life. I was young and dumb; I know better now.

I’ve mentioned my parents, but I should also talk about my sister. She drove me crazy growing up. I remember liking a boy in 6th grade, and as we were walking home from school, she went out of her way to embarrass me. I was again mortified. Now I know that she was just trying to spend time with me. I remember our neighbor punching her in the stomach, while I, in a near stupor, did nothing. This is one of my childhood regrets — that I did not defend my sister. If I could redo this moment in time, I would. And recently, I learned that my sister punched one of her friends for badmouthing me back when I was in high school. Jaime, I promise to fight back if “she who shall not be named” holds your arms again so her sister can use you as a punching bag.

My sister and I have had some horrendous emotional and physical fights, as most siblings do. We used to share an apartment, and you can guess how disastrous that was. (Don’t worry Jaime. I won’t share all of your dark secrets here!) But after time passed, we both had families, life went on, and we got past these adolescent spats. At the end of the day, I know she has my back and I have hers. I’m pretty sure I was the first person to know about my sister’s impending divorce and the reason behind it. And even though I have an amazing tribe of friends, I called my sister to be with me when my daughter was dying. Sisters. The most interesting love/hate/mutual admiration/I’ve got your back relationship on the planet.

My parents raised my sister and me to be strong and independent women. They wanted us to have our own opinions, and boy did we. That is one thing that hasn’t changed through the years. I’m sure they didn’t enjoy all of our arguing and debating as kids, but as adults, one of our favorite things to do together is to sit at the dinner table and discuss relevant topics. All of us chime in. And as I tell my friends who know what a talker I am, I am actually the 3rd quietest in my family. I almost have to raise my hand to get a word in. I understand now that not all families communicate like ours does — for better or for worse.

On a good night, my dad will get out a napkin and doodle his view of the world. I know someday I will miss his napkin missives. And my mom, well, as a kid she’s always put a note in my lunch when I’d go on field trips. That used to embarrass me; now, I’d love to have saved one of her notes. I know now what I believe no kid understands when they are young — how devoted and hard-working my parents are and were.

When I was in college, my sister and my dad used to create crazy scenarios just to come for a quick visit. Jaime had to “borrow an outfit for school.” Or Dad was just “driving through town” and thought he’d stop by. During my first years of teaching, on the days I felt dejected and ineffective, my mom would come to my apartment and either sit with me or drag me out of the house to get a Sonic drink. I guess what I’m trying to say is that my parents, like my sister, have always supported me. That doesn’t change with age or with distance or differing opinions. For that, I am eternally grateful.

As an adult, I understand that my parents may not like my choices, but they will support me even if they disagree. I know there’s nothing I could say to my parents that would make them turn me away. I can let down my guard around my mom and dad, and even on my worst days, they will still love me. Best yet, my parents don’t just love me; I think they legitimately like the Crysta that I’ve grown into. Good thing I’ve matured because sixteen year old Crysta was a pain in the ass. They must have worked hard to tolerate her.

I am going to end with a quote from Erma Bombeck, which pretty much sums up my upbringing from my parents’ point of view:

“Someday, when my children are old enough to understand the logic that motivates a mother, I’ll tell them: I loved you enough to bug you about where you were going, with whom and what time you would get home. … I loved you enough to be silent and let you discover your friend was a creep. I loved you enough to make you return a Milky Way with a bite out of it to a drugstore and confess, ‘I stole this.’ … But most of all I loved you enough to say no when you hated me for it. That was the hardest part of all.”

30 Things

black flat screen computer monitor

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).

  1.  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.
  2. 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.
  3. 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.
  4. 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.  
  5. 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.
  6. 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.
  7. 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. 
  8. 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.
  9. 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.
  10. 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?
  11. 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.
  12. I’m thankful for the cards that still pop up in my mail.  Thank you for never letting me feel alone.
  13. 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.
  14. 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.
  15. 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.
  16. 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!
  17. 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!
  18. 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. 
  19. 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.
  20. I’m thankful for writing, which allows a place for my thoughts, joys and heartaches to land.
  21. 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!  
  22. 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.
  23. 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!
  24. 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.
  25. I am grateful for all things girl-power and Wonder Woman because they remind me of my sweet girl.
  26. 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.  
  27. 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.
  28. 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. 
  29. 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.
  30. 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