Hamilton and Grief

If you’re like me, you’ve spent the better part of this past month watching Hamilton on repeat (thank you Disney+.) I was a late Hamilfan, and my mom and sister delighted with glee over my newfound discovery (that they’d long since discovered and loved.)

I’d been warned about the child loss connection in the show, but I also knew the story (not the show) so knew his son died in a duel. I’d read several stories that biographers wrote about how devastated Alexander and Eliza were and how much it changed them. (Even writing that sounds absurd to me…because OF COURSE THEY WERE. Of COURSE it did!) I think a lot of people figure that hundreds of years ago, people were used to some pretty horrific things, so death of your son by duel just “happened” back then. We know how far society has come in accepting grief as a constant part of the bereaved parents’ life and while we are light years ahead of where we were even just from the 1960s (and certainly from the 1800s) it is still an ongoing uphill climb for those of us who live with the pain every day.

I imagine most would assume that the song “It’s Quiet Uptown” would be the one that guts me. There was commentary done about how smart Miranda was to have Angelica actually sing that song. It was too painful for Alexander and Eliza to do so. So she had to speak for them. It’s true. It’s a beautifully written song, but if I’m being honest, it’s not the one that haunts me or the one whose lyrics sing out in my mind.

The very last song. “Who Lives, Who Dies, Who Tells Your Story” utterly destroys me. I have watched the show (embarrassingly about 6 times) and I’ve only watched through to the end once.

“The Lord, in his kindness
He gives me what you always wanted
He gives me more time (time)”

…”Will they tell our story? (will they tell your story?) Oh, can I show you what I’m proudest of?”

…”And when my time is up, have I done enough? Will they tell my story? (will they tell your story?)
Oh, I can’t wait to see you again!
It’s only a matter of time ”

When you lose your child, nothing matters more than keeping their memory alive. Cultivating their legacy. Keeping them “in the narrative.” Nothing matters more in my life than hearing Kate’s name on the lips of others. We don’t have any other children to tell our story when we’re gone. We have you.

Thank you for helping us tell her story.

Thoughts at 4am

We bought our house 11 years ago next month. It’s a cute little split level in a great neighborhood with a lot of charm. It has a big back yard and four bedrooms. We painted every square inch of this house, including the baseboards and ceilings before we moved in with two very specific exceptions. The two spare rooms upstairs were left “as is.” I won’t say we were expecting that those two rooms would become our babies’ rooms, but there was hope that at least one would. So we held off on painting those rooms…until.

I never liked that the house had just a one-car garage, but there was a driveway and plenty of street parking, so I got used to the fact that the garage would be more of a storage and workshop area instead of housing a car. After all, we’d bought a beast of an SUV with the very same “hopes” of needing lots of car seat space and trunk room to accompany what families of four typically need and use.

We later painted one of those two rooms a beautiful robin’s egg blue complete with a sunshine yellow closet interior. That room would become Kate’s bedroom and the garage became much more than just a workshop for Daddy’s tools. It housed our gigantic stroller, push cars and sidewalk chalk. It was where we shed muddy boots, sandy toys and dinosaur umbrellas.

We always hoped we’d have a reason to freshen up that second room, but never did. And that garage now houses actual storage racks that we bought with storage bins built to fit. Those bins hold decorations organized by season for Kate’s cemetery plot. And that beast of an SUV doesn’t carry a car seat or anything in the trunk except a cemetery readiness bin with gardening tools, spare batteries for various decorations and a blanket where I can spread out when I visit.

11 years ago, we closed on this house overwhelmed by the space we’d need to fill. It’s not lost on me that now, 11 years later, we are again…

She Would be Nine

Nine.

Nine years ago, I got the job I never knew I always wanted, but was soon to realize it was the only thing I’d ever been truly good at. Nine years ago this very morning in the wee hours, I became mommy. And not just any mommy. Kate Olivia’s mommy. I was blessed with five extra weeks of her beautiful, sweet, calm soul and I’ve been counting my lucky stars ever since.

She’s now had more birthdays in heaven than here with us. I don’t even know what a 9 year old looks like. It hurts so much to miss her, particularly on days we should be doing nothing but celebrating her WITH her. It’s so easy to become overwhelmed with unimaginable sadness, but it’s also so easy to find JOY because SHE WAS BORN. She was mine and I got to be mommy to Kate Olivia.

Today, I’m going to try be more like her. I’m going to find the joy. Lord knows she always did. I’m going to smile through the tears. She did that, too. I’m going to remember that the day she was born changed my life and gave me purpose. Because SHE WAS BORN.

Happy birthday in Heaven, my beautiful girl. I love you so much. I miss you. Best friends forever. I promise.

“There’s a light that you give me when I’m in shadow. Tthere’s a feeling you give me, an everglow…”

2019 Year in Review

Hello and Happy New Year from Kate’s Cause! I sat down to write this post and became overwhelmed at just how BIG 2019 really was in our little corner of the world, and I just couldn’t wait to share it with you all. (I also realize how very behind I am on blogging it all!)

We had a tremendously successful birthday toy drive again this year and celebrated what would have been Kate’s 8th birthday by delivering the toys you so generously donated directly to the clinic.

Immediately after, we packed our car up and headed to Philadelphia with a $50,000 check to deliver to Alex’s Lemonade Stand Foundation for the two grants we would co-fund later in the year. While there, we were able to visit with our very first grant recipient, Dr. Christian Hurtz, PhD, and got to tour his lab, ask questions and learn how the dollars YOU spent is helping in the battle with childhood cancer. In the coming days, you’ll hear all about the two new research teams we’ve chosen!

Perhaps one of the most rewarding moments of the year was being able to dedicate Kate’s Book Nook to the clinic with over 500 brand new books thanks to YOUR donations! We decorated the space fit for any dinosaur loving love bug and presented a $10,000 check to Inova Children’s Hospital.

After the busy summer, we entered into September and worked really hard to ready ourselves to entertain 500 of our closest friends with Kegs & Corks for Kids Cancer! Even more special this year, was that the creator of the event and Kate’s nurse, traveled across the world to be there for the event as well as the weekend following in Wisconsin. The two events totally blew us away by raising a combined $43,101.24 for us to continue our research grant work well into 2020.

We launched a brand new merch line! We raised our voices at CureFest once again this year and we hosted the clinic’s Halloween party for patients, families and staff! We had a fantastic event at Kendra Scott for Giving Tuesday! And we wrapped up the year giving our 2019 Kate’s Kindness Award to a very deserving candidate.

All of this because of YOU.

As we settle into our season of deepest grief as the fourth anniversary of Kate’s departure for Heaven, it is so important that we pause and extend our truly heartfelt appreciation for you. Without you, there would be no us. Because of you, we get to keep our promise. Because of you, we get to do for them.

We are humbled and oh so very grateful and we hope you’ll join us for another amazing ride in 2020. It’s the year for vision. Clarity. Let’s find that cure together! Until Childhood Cancer is Extinct!

2019 Impact Report

When we decided to co-fund grants with Alex’s Lemonade Stand Foundation, we were especially thrilled about the fact that we would get annual impact reports and status updates from the researcher on the project. We have been fortunate to forge a relationship with Dr. Hurtz over the last year (and some months) and were able to visit him in June and tour his lab.

We are pleased to share here the 2019 impact report for Dr. Hurtz’s research to show you how our grant is being put to work.

Kate’s Book Nook

On Friday, August 9th (on what turned out to be National Book Lovers Day!!) we dedicated our very special, long-awaited project at the brand new Center for Cancer and Blood Disorders at the Inova Schar Institute, Kate’s Book Nook! (Click the link to watch the video!)

Over a year in the making, this space was a dream come true for us as we sought to find a permanent place where Kate’s spirit could shine through and continue giving back to this community of pediatric cancer families.

With the help of countless people from the clinic, Inova Children’s Hospital and beyond, we are thrilled to share that the Book Nook officially openes tomorrow and that patients and their families will be welcomed to snuggle up and read over 550 titles donated by YOU, Kate’s Cause supporters. We have books for all ages, books about special needs and big subjects like cancer and surgery. We have books in braile, books in Spanish and books about different cultures and parts of the world.

Our celebration was made complete by presenting a check for $10,000 to Inova Children’s Hospital to our very own Doctors Lawlor and Dulman.

We are so proud to dedicate this space to our Kate, who loved books from the time she could sit still.

KitKat, we love you. Until we read again…

My Grief Secret

I miss and often long for those early days of grief. The ones when everyone understood that my world had ended. The ones where she was just here yesterday or last week. Or last month. The ones where her juice, milk and snacks were still in the refrigerator and her cups were in the dishwasher. The ones where the towels in her bathroom were still damp from the night before. Or where her books and toys lay out from when she last played.

I miss and often long for those days because I could still smell her and feel her physically in our home. Her laundry basket held clothes she’d just worn. When I slept, I still woke expecting to find her. Expecting that reality was actually a nightmare and my life WASN’T really turned upside down.

I miss and often long for the days when it was accepted, embraced and expected that I cry and wail in sounds my voice now only makes in the stillness of my mind or in the privacy of when I am alone. When all that was expected of me was to ache, mourn, speak of her in the present tense, wonder out loud how on God’s green Earth this happened? When putting on a show, getting “better” at this fake life or being asked, however gently, to “move forward” wasn’t even conceivable.

I miss when my world had just stopped turning and when it had stopped for everyone around me, too. When Kate’s name was on the lips, in the hearts and in the soft-spoken sound of prayers from those around us. I miss when the pain was so overwhelming, I just didn’t even bother to get off my knees.

Now? I am expected to stand. I am expected to fake it. I am expected to move forward. I am expected to be better. I am expected to smile at the thought of her before I cry at the thought of missing her. 3 and a half years later, I miss being understood to the point where I didn’t have to explain myself.

Time doesn’t move in a way I understand anymore. There is nothing I wouldn’t do to go back long, long before I had a grief secret to keep. Long before I understood what could, and ultimately did, actually happen. There isn’t a single part of me that doesn’t wish for that every day. But as the days and hours pass, I still find that I bargain with God. Myself. The Universe. For what, I don’t even understand anymore. When she lived, when she was here, when she was real…THAT is what’s starting to feel like a dream. I’m losing my memories of her and it’s happened so, so fast. Too fast. I’m starting to forget what it felt like to be mommy. I’m forgetting what it felt like to live in that world of family. It’s where I felt most at home. It’s where I felt the most myself. There, I am still mommy. There…is where she is.

But. My grief secret is that I’d also go back to when this loss and pain was fresh and new. Because there, Kate was as much a part of other people’s lives as she is mine. Because it was so raw, I could remember that life with such ease. Afterall, it was just yesterday. Last week. Last month. Because in this new world of normal that is anything but, walking around with my broken heart bleeding and oozing from my chest as a bereaved mother is  the only place I feel naturally myself after the sun abruptly set on the life I once knew and cherished so deeply.

The Mind Behind the Magic

In 2018, for Kate’s birthday, Kate’s Cause awarded its very first grant check of $25,000 to Dr. Christian Hurtz, PhD, for a co-funded young investigator grant with Alex’s Lemonade Stand Foundation.

This week, for Kate’s birthday, we got to meet Dr. Hurtz in person. I can’t even really describe what it was like; seeing the lab, hearing from his mentors and learning about the research. But even moreso, what truly got to us, what TRULY inspired us was watching Doctors Hurtz, Tasian and Carroll connect the personal dots to the money awarded for this grant. This research can exist because KATE LIVED.

The three of them were so generous with their time. They gladly answered questions, and asked them in return. They told us repeatedly how much it meant to them for us to be there, to take part in helping make those personal stories part of their approach. They shared stories about how this grant money allowed him to share successes and apply for (and receive!) further grants towards this research. Dr. Hurtz was awarded the 2019 American Society of Hematology Scholar Award in part…because KATE LIVED.

After visiting the lab, we toured the day hospital (what we call the clinic) at CHOP with Dr. Tasian, the Assistant Professor of Pediatrics, Division of Oncology, Center for Childhood Cancer Research. For us? Not a bad way to spend the day…not a bad way at all. We left behind a little Kate love to some of the patients we encountered (no photos for obvious reasons) but I wanted to rush in and wrap every single patient and parent in hugs. I hope our knowing glances, smiles and waves did the trick, but I wished I could have done so much more. Mike got high fives from two sweet loves in the play room, and I could have stayed all day.

They showed us the oncology and transplant unit a CHOP, a soberingly HUGE operation. Their unit was as large as our entire children’s hospital; I kid you not. We were even gifted the opportunity to talk with Dr. Gerald Wertheim, Pathologist, Hematopatholgy Lab, to hear about how his work coincides with the team at UPenn.

It was an overwhelming day. There were moments it got personally hard to take, but most of that I’ll save just for me. As we were leaving, and I looked out toward the building, knowing how many of my friends’ children were treated here, understanding that we were leaving with Kate’s Cause money in the very best hands with Dr. Hurtz and team, I felt an unquenched NEED to do more.

KATE LIVED. And I won’t rest until I’ve kept my promise.

With the utmost gratitude, I say thank you to Doctors Hurtz, Tasian, Carroll and Wertheim, for their time, care and understanding. This visit truly made an impact and I promise to do more.

When Life Hands You Lemons…

…you either taste the bitter juice and let it twist your face into knots or you add a little sugar, find the sweetness and make one giant pitcher of lemonade…to share.

We were asked several times this week “why carry on? Why continue in the fight? Why not curl up in bed?” As Mike and I were asked this question by several people, we realized that our answer was always the same. “We have to. We just have to.” For us it is that simple and that “easy” of an answer, though the actual process of doing so is not always so easy. It’s never simple. It’s making a choice day in and day out to face the absolute horror of our lives, to CHOOSE to tell Kate’s story over and over, to hurt to our core each and every day because the only reason IT exists is because she no longer physically does. It’s the belly of the beast every day and I am constantly aware of childhood cancer and constantly wanting and longing to do more, limited by real life “things” and responsibilities, never knowing if we’re doing enough.

Liz & Jay Scott are no different from us. They are parents. They are Alex’s parents. And during the busiest time of year for their team of nearly 60 (!!) at Alex’s Lemonade Stand Foundation, they opened their office and their time to us and made us fee like we were important. They made us feel like we ARE doing enough. Like we are exactly where we are meant to be with our grant co-sponsorship with them, and it was never more apparent than this week.

Liz & Jay sat with us, talked with us about our goals, about what we hoped for Kate’s Cause. They asked us about our events, about our strategies, gave us amazing tips and advice and asked about Kate. We were interviewed by their PR team about why we chose to co-sponsor a grant with ALSF and about why working with them has been so beneficial for us, as a small organization.

I am thrilled beyond beleif to share that while there, Kate’s Cause awared another $50,000 to fund TWO grants in 2019, bringing our total funding to $75,000 in just one year.

The first will be an Innovation Grant, designed to provide critical and significant seed funding for experienced investigators with a novel and promising approach to finding causes and cures for childhood cancers. This will be awarded to a project of our choosing in July, followed by a Reach Grant, designed to move hypothesis-driven research into the clinic. The two year grant is intended to fund developmental therapeutic studies in the late stage of preclinical testing and will be awarded to a project of our choosing in November.

I don’t have any facny photos to share. I don’t have any pictures of us with the team or snapshots of, well, anything. All I have is this photo of our big check and a bag full of dinosaurs. And a full and grateful heart for our supporters and donors, allowing us the opportunity to be a part of something so inspiring and exciting as these grant opportunities with Alex’s Lemonade Stand Foundation.