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Whew. 2020, am I right?? In my year end review for 2019, I claimed that 2020 would be the year for vision and clarity, and through the struggles, I think that’s exactly what we found. While experiences across the nation and the world were different, our overwhelming feelings at the end of such a challenging year were those of gratitude. Gratitude for the love and support of family, friends and even strangers. For health care workers who continue to put themselves in harm’s way to care for us. Gratitude for our jobs and our home, for our safety and health. We know all too well how quickly those things can fall away and how in an instant…it can all be gone.
Continue reading “2020 Year in Review”

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…

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.

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!

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.

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.

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.