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Hurting for the Holidays

It starts at Halloween. Her favorite, I think. Kate was diagnosed in August, so the Halloween that followed was an absolute blow for her. She was so sick and in so much pain that for that particular year, it was all about what we could do. We crafted, we looked at decorations online and in our cul du sac. We couldn’t go far, so she developed a love for the holiday from the safety of her covered cart at Target. She loved the decorations and the costumes. She’d choose 10 things each year she would like to be. She only ever got two REAL Halloween adventures, but she loved those two nights so completely. She didn’t even care about the candy, really. For Kate, Halloween was all about the build up. The days leading up to. Now, I can’t even answer the door. All the costumes that grace my Facebook feed or parade around my neighborhood only serve as a reminder of who she would be.
Thanksgiving hasn’t ever been my favorite holiday, but since Kate passed away, it has almost become so. I think it’s more that it’s a favorite memory than anything. Kate was feeling so, so well her last Thanksgiving and she was little miss personality. It was the very last day that I can remember her feeling good. Being 100% KATE. In love with life, her whole future ahead, family all around. Now, we bury our heads in the sand, sometimes choosing to half-hardheartedly participate, sometimes not. Each time we don’t, I feel I’m betraying her. How dare I not invite the whole family over for the same feast we’d served when she was here? How could I even think of not celebrating a day all about family; something she cherished?? But then when I do, I also feel it’s a betrayal, even considering a family gathering when she cannot participate. Afterall, WHAT is my family without Kate?
The sound of Christmas carols makes my stomach hurt. Twinkle lights make me cry. I went from being the mom who did it all – decorating, baking, shopping, wrapping, hosting, crafting – to…well…nothing. I don’t say that to sound arrogant. I really don’t. I’m a mom who LOVED the holidays and Kate just made my love and joy for them magnified x 1000. She allowed me to be the mom I always dreamed of being and together, we got to turn a whole month into excitement, joy and fun. She was my little sidekick and from as early in her life as I can remember, she was right there with me oooh’ing and aaah’ing at every sparkle that caught her (our) eye.
It breaks my heart, really. Kate loved (LOVED) the joy of celebrating. All of it! St. Patrick’s Day, Mother’s Day. It didn’t matter. Counting down to special occasions was something she truly loved to do. Having her family descend on our house, helping to set the table, just giddy with the excitement over the pure merriment of the season. Presents? Sure, she loved that part. Cookies for Santa and leaving him and the reindeer letters? Absolutely. But my girl just loved the JOY of it all. After all, she was at the center of our world and she just simply loved her life. She really did. We were told once “the short experience she had here was wonderful. She was not defined by illness. She was made to feel lived and important and she was cherished. Cuddled. And that was what really mattered to her.” She LOVED her life, her family and her world and I wish I could just live in that world again. It was magic, really, the bond of us three.
I dreamed of taking her to the Nutcracker. Dressing in special glittery, twirly skirts and taking her to a special tea or dessert restaurant and delighting in all things sugar plum fairy-ish. In fact, when I found out she was a girl, I think this might’ve been my very first thought.
I want…I SO WANT…to be able to celebrate for her. To rejoice in the feelings, do all the things she couldn’t. Because I know with every fiber of my being that she’s right there with me in spirit and to me, that means something. “In spirit” doesn’t just mean “oh she’d love this.” No, to me, it means she’s THERE. In my lap. holding my hand, twirling in a pretty skirt. And she wants me to. OH HOW SHE WANTS ME TO. I just don’t know how. I don’t know how to pretend it’s okay when it just simply isn’t.
The holidays are just so, so hard. I want to be okay and I just don’t feel like I ever will be. For her, we will keep on trying to find out how to carry forward with her in my heart.
Kate, you made every single part of my life better and I’m trying as hard as I can. I love you. I miss you. Best friends forever. I promise.

Another September

Yesterday was September 1st. Another start to another September…the third, in fact, since our Kate flew home. September 1st, as you likely well know, is the start of Childhood Cancer Awareness Month, and a very important month for organizations just like ours. Our biggest event of the year takes place in just 3 short weeks, and we’ll stand with others on the National Mall two weeks from today for CureFest to be heard with one voice that we are #goldstrong but that we still need MORE THAN FOUR.

But otherwise? I’ve somewhat let this month and its importance settle within me. You see, I have no choice but to be aware. I have no other option but to know the intimate, horrific, often overlooked realities of childhood cancer because of how it played out in my world. My personal Facebook news feed is overwhelmingly gold with my baby’s face gracing the profile pictures and shared posts of friends and family alike. I often wonder if my feed is so gold because people know Kate or, if it’s because childhood cancer is so NOT rare that a vast majority of my Facebook friends are people whose lives have been deeply impacted, just like mine. This year, I am choosing to believe that in my little personal corner of the world, I have done my job. I have raised awareness.

But what about the rest of the world? What about the politicians and the media and the influencers of this great nation who can DO something about it? One of our three goals at Kate’s Cause is simply put, “to raise awareness.” I struggle with how to impact the big, broad sea of people who don’t know, turn the other way or care more about something else. I don’t know how to make people care about how currently, the federally funded National Cancer Institute (NCI) only allocates 4% of its annual budget to research for childhood cancers. Small organizations such as ours cannot do it alone. We NEED the government to help make our children a national priority and provide MORE THAN FOUR!

But. We will do our part. We will do whatever it takes. Whatever we can.

Yesterday, on the start of this very important month, at the suggestion of a friend, we kicked off Childhood Cancer Awareness Month in the most Kate way possible…at The Color Vibe 5k with dozens of families supporting ours with Kate on their shirts and in their hearts. The work family and board members who ran, skipped, walked and smiled through the race raised awareness just by being there. “OH! There goes another dinosaur” was heard all along the path. The group was the largest organized group at the race and got called out while taking a group photo and everyone turned to see this amazing group of people who, likely just a few short years ago, didn’t know about childhood cancer either. I just know how much Kate would have LOVED watching all of the silly, rainbow colorful antics.

We might not have changed any lives yesterday by our awareness movement. But MINE was changed by these people many years ago when they decided to rally behind us and support our family with no stone unturned. So that for me, for this year, felt exactly right.

The Night Before Second Grade

All across the county, moms & dads are setting alarm clocks, packing lunches and desperately trying to adhere to their carefully planned bed times and routines. Littles will head to bed tonight; some nervous, some excited, some dreading the first day of school tomorrow. We’re one of the last counties to go back…most of our friends’ kids have been back a week or more now. I’ve watched for days. Photo by photo. Gut punch by gut punch.

Not every kid will go back to school. And even now, this much time later, it still simply blows my mind that mine is one who won’t.

She isn’t “old hat” at her elementary school. She doesn’t know the ins and outs, being a big-time second grader in what should be her third year there. She won’t ever know the cubby with her name on it. She won’t ever know the classmates who were robbed of a really special friend. No excitement over school supplies, backpack selection or that special first day of school outfit. What does a second grade shopping list look like? Would I pack her lunch with carefully planned sandwiches cut into special shapes with encouraging notes (that now she would actually be able to read?) Teachers will never know her clever, beautiful spirit. Friends will never know this brave, tender-hearted girl who changed lives. Other parents will shuffle through car line and bus stops and never know there was a girl who was supposed to be in attendance.

Her name is Kate. And she belongs there, too.

Please don’t misunderstand. I don’t begrudge families their special days. I truly don’t. I don’t blame you for being sad over sweet littles marching off bravely to kindergarten or big littles stiff-upper-lipping it though move-in day at college. I get it. It’s not nothing.

I just wish Kate got these special days, too. I wish I knew what it felt like. I wish I could be sad too, for different reasons. I wish I could miss her for just a day.

I wish I knew my second grader today. Her name is Kate. And she belongs here.

Kate Colored Glasses

It hasn’t happened like this in a long time. I found myself lying awake, writing in my head. I pay a really wonderful lady a pile of money to listen to me week after week so it seems writing doesn’t come as easy these days simply just because what I used to write here day in and day out…now I say to her.

I was thinking about J35, the beautiful momma whale carrying her baby now into the second week since it passed and I thought…”we’re really not so different, you and me, momma whale. Only difference is that the world seems to understand you and feel your grief.” It got me thinking: is it because people can see her calf? Is it because people can imagine carrying the physical weight of a lost child? And now, on the eve of two years and seven months without her, I’m here to tell you. I still carry Kate, too.

She isn’t a newborn bundled in sweet blankets, just up from a nap. She isn’t a squirming toddler ready to explore but unsteady on her feet. She isn’t sleepy and smelling divine, fresh from a bath. No, she’s not in my arms. She’s not got her head on my shoulder, breathing sweet breath on my neck. She’s not giggling into my ear, sending goose bumps down my spine. She’s not so tall with such long legs that her feet bang against my knees as I creak up the stairs, weary under the weight of her. But I carry her.

I carry Kate into each and every thing that I do. Her life is my life’s rose-colored glasses and now, I see everything through her. Should I be lucky enough to see the sun rise or a morning-glory in bloom, I speak to her about it. I speak to the bunny in my back yard, munching on clover as if she’s with me and we’re watching it together. I don’t make a change to the sheets on our bed or buy a new set of pillows without thinking about how I’ll part with the old ones…because she knew the old ones. Her physical presence existed with the old and anything new just HURTS. I don’t visit a new place or think about my future without her being intimately involved.

I seem to have what I now refer to as “Kate Colored Glasses.” They are part of me and I cannot seem to see without them. Every choice. Every thought. Every new experience. Every memory. Every plan. I wear them with her in my full front view. I involve her in everything. I carry her. Oh, yes, I carry her with me. You may not be able to see her, but I can.

I am her mother. And just like J35, I will carry her long from now. Forever. I have been all along.

Seventh Heaven

For the third year in a row, you nudged me awake right at 4:04am, the very moment your beautiful face entered this world. For the third year in a row, it’s bright and beautifully sunny outside instead of the forecasted gray and dreary. For the third year in a row, I have walked to your room and wished to the heavens I’d find you there. But for the third year in a row, you are gone on your birthday and I’m celebrating for you instead of with you. Continue reading “Seventh Heaven”

A Birthday of a Different Sort

This past Saturday, almost one year to the day of our official launch, we celebrated the first birthday of Kate’s Cause, our foundation built from love and heartache. We gathered with 254 of our closest friends, family and new faces alike and we celebrated our birthday. We celebrated Kate.

BECAUSE OF YOU, IN ONE YEAR, WE WERE ABLE TO FULFILL OUR PROMISE TO KATE.

Because I am at a loss for words, a rarity for me, I thought I would share my speech and our news with you here, since it expresses what I so wish to say. Continue reading “A Birthday of a Different Sort”

An Open Letter to Kendra Scott

My daughter loved my jewelry.

She’d play with it hanging on the hooks in my closet from the time she could stand, and she’d often be found on my lap playing with my bracelets & necklaces but ALWAYS commenting on what she liked best each day. Last night, the fine folks at your store in Reston Town Center invited us to partner with them to launch your gorgeous summer line. This was a big honor for us on many levels – it’s a big and exciting day for your company, and I’m told that we were chosen because the team loved our mission, loved our people and have enjoyed us in the past. To do an event like this where we remember Kate, raise funds for research AND have the opportunity to give back to other moms of patients with childhood cancer means more to me than you could ever really know. Continue reading “An Open Letter to Kendra Scott”