Marc: In His Own Words

I’ve started this at least 10 times already, but I must get it right. See, I’ve written to/about you before, but that was my blog, my space. Now, your Mommy gave me the honor of writing something in your name where your army of supporters will see it, and to do you justice, it must be perfect. Because, my gosh, you were perfect, sweet Kate. You were too young and vibrant and loving to be anything but perfect. Too perfect…

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Megan: In Her Own Words

Kate has had an incredibly large impact on my life. She provides me with a sense of calm, passion, and perserverance; things I historically struggled with.

When I get tired and feel overwhelmed, I remember how tired she was during treatment and that cuddling on the couch with her mamma made her happy. So I take to my couch and cuddle. When life gets busy, I am reminded to look for the little joys and embrace them. Often baking with my girls and talking about “our Kate” as they call her.

My heart lights up to see Kate’s photo or the Kate’s Cause logo pop up in my notifications, knowing I will have a chance to share her story and honor her memory. When shopping, I often find things Kate would love and purchase them for my girls or to donate to the children’s hospital in her memory. We have dinosaur salt & pepper shakers and a dino cookie jar, both purchased at moments like this.

When I feel helpless in the fight against childhood cancer I donate platelets which are used to treat leukemia patients at Inova. I visit her often; I stop by on random days when I am in the area, on rainy days when all is quiet and still, and on warm sunny spring days. I leave feeling peaceful and connected to her.

She makes me a better person, a better friend, a better mother daily. She makes the world a better place.

Thank you Kate! Love you always!

A Letter Today, Just Because I Miss You

March 3, 2019 1:27pm

I’ve spent less time in here. Have you noticed? I feel like I should have more…or maybe better things to say besides how much I miss you. But here, among your things and your bed and your sweet clothes, it’s the only feeling I have besides how much I love you. Is that okay? That nothing more interesting or profound comes to mind? Nothing more earth shattering?

Funny isn’t it? That I say that? Feels pretty profound and earth shattering to me. Maybe only to me and those who love you. But that feels like enough to make the Earth stop moving. But it hasn’t. And I’m still not sure how.

I miss you. And I love you. And I have no way to tell you, so I say it out loud every day. I think I speak to you all day, every day, don’t I? I don’t even know anymore because I don’t think I ever stopped. I think you are around me like the air.

I am terrified of forgetting you. Your unique “you-ness.” Your smell. Your touch. Your weight. The feel of your breath. But how could I, really? Here, in your room, I remember it all. It hurts so much, but it feels so right. Necessary. Because it’s you, and the pain AND the love I feel for you are all I have left of you. What else can I do but say I love you and I miss you every day?

Love and miss you I do, my girl.  Love and miss you, I do.

When Facebook Memories Aren’t Needed

Facebook memories. They can be so helpful and hurt so much at the same time. Reminding me of little moments I may have later forgotten, or slowing down my pace to linger and smile over a chubby baby foot or get a chuckle out of a sweet thing she once said.

But there are days like today where no memory of anything that happened prior to or after January 10th, 2016 can erase what THAT day brings to mind. There weren’t any posts or pictures but it’s burned into my head and heart deep and searing.

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Kate’s Kindness Award 2018

Kate’s Cause had a really great morning. We got to surprise our friend Campbell with the first ever Kate’s Kindness Award, which is a gesture of thanks and appreciation for the kindness shown not only to our family but to Kate’s Cause. This is the first we’ve granted and something we hope will be an ongoing thing for years to come and it kicks off a new year in such a positive way.

Campbell is 12 years old and she and her family mean a great deal to us. It was such an honor getting to see her sweet face (and her family & friends) today. The video is posted below, along with what we shared with Campbell and her family:

“We’re here surprising Campbell Neiman with a very special, first-of-its-kind award, which is a gesture of thanks and appreciation for the kindness shown not only to our family but to Kate’s Cause. This is the first we’ve granted and something we hope will be an ongoing thing for years to come.

The award is called the “Kate’s Kindness Award” but it is truly inspired by Campbell.

Campbell’s efforts, passion and kindness towards our family, Kate’s Cause and OTHER organizations supporting children with cancer are astounding. For a girl who just turned 12 a few days ago (happy belated birthday!) Campbell has done some truly amazing things.

When she was just 9, Campbell marched & rallied with us at CureFest. She made posters and joined us in our protest march to the Capitol. She knew at just 9 that childhood cancer was something that needed MUCH more attention than it was getting and she was going to make her voice heard – alongside Kate’s Cause. Something we will NEVER forget. For her 10th birthday, she asked for nothing for herself, but rather, donations to Kate’s Cause. On that birthday she raised $160 and would continue this trend for years to come. In total, for Campbell’s last three birthdays, she has raised $880 for the Cause. All her idea. All her choice.

And then, this fall, Campbell and her travel soccer team called the Shenandoah FC (Football Club) Elite worked on a community service project as a team and together, chose to support Kate’s Cause with their efforts. Their fundraising brought in over $2300 for Kate’s Cause which blew EVERYONE away.

Campbell has attended every Kate’s Cause event she can – the PanKate breakfast being a favorite. This year, she recruited friends! She volunteered for the Kyle’s Kamp holiday store, helping patients select & wrap presents for their families. (What other 11 year old do you know who would do that??) She advocates, remembers and honors Kate at every chance she gets and she supports us in a thousand other ways.

Campbell, we are so grateful to have you in our lives. Your passion and dedication to help children with cancer is so contagious. We wish some adults had a fraction of the heart you do – to make our children a priority. There is something really special about you, and you are the embodiment of what I say often – that kids today are going to change our world. You already have. You do. And we are so proud to know you and get to have you in our circle.

To Daryn & Michele, Campbell’s parents and my friends from high school, I know how immensely proud you are. Thank you for letting Campbell be a part of our lives, and for letting us love her like we do. The apple obviously does not fall far from the tree here, and we are so thankful for your WHOLE family for the support we’ve been given from day one. It’s really amazing.

When we first started to discuss the idea of Kate’s Cause…a way to honor our daughter, I had these huge, grand ideas that we wouldn’t be successful unless we CURED childhood cancer. Unless we raised MILLIONS of dollars. Unless we got the attention of every doctor and researcher in the world and made strides no one else had. A cure was the only thing on our minds. While a cure remains our number one priority, I realize now that the feeling of Kate’s life having impact is what is most important. Her legacy lives on in people like you, Campbell. Because she touched your life, you’ve carried that flame. There is no greater gift to a parent who has lost a child than that.

Campbell, you’re the first award recipient of the Kate’s Kindness Award – there truly could be no one else. We love you and we thank you!”

To Those at My Table

Maybe you’ve stood in a store, mindlessly running your fingers over the glittery ornaments that seem to be made just for you and your child, but you wonder if you should buy them because…well…

Maybe you’ve stood in that same store, or maybe it’s another one (because you’ve gone to 10,) and cursed everything in your path because try as you might, there exists NO store that carries anything perfectly suited to decorate a four-year old’s headstone for Christmas instead of her play room tree. Maybe you’re crying as you move numbly aisle to aisle, hearing her in your ears and wondering what she would be like today, cringing as the little girl with cat ears and pink boots twirls by.

Maybe you have a rack in your garage like me, with organized bins and shelves full of decorations of the past 3 holiday seasons and now you ache and cry and wonder if anyone really knows what that feels like. That a quarter of your garage is dedicated to storing cemetery decorations because you cannot bear to throw anything away because it’s all you have left; all you have to give anymore. This is life now. This is “normal.”

Maybe the very thought of the holiday tears you in half because you WANT (oh how you want!) to remember the good holidays for a moment or shoot, you’d even be okay remembering the bad ones when chemo threatened to destroy your memories. You’d actually give anything for the bad ones again because they were REAL. They happened. They were actual, real life and now, you can no longer create more of those new, real life memories, hard as they were at the time. And you feel torn because how in the hell can anyone ask you to feel thankful, grateful and blessed when the world has ended and left its mark as ashes at your feet? You know you are all of those things, but you are also and sometimes MORE devastated, isolated and broken?

Maybe you feel one day like it’s okay to be angry, but cry yourself to sleep because you feel AWFUL at being angry because you know it’s so very, very far from what your little girl wants for you. There is a face that others see, but even that is cracking and you feel like screaming and spitting like a caged animal at the rage you feel inside because no one really understands that YES, GOD DAMMIT, IT DOES STILL HURT THIS MUCH!

But then you catch one glimpse of her face in a photo and for a moment, you go back in time. Maybe you close your eyes, but I know you wish with every cell in your body that you could just stay there forever. Or for one second, because even that long would be okay. You relive the “lasts” you experienced with your love over and over again. All of the “befores” and “untils.” You cherish the perfect family photo from that last Thanksgiving that you still get a giggle over because of the blasted turkey carcass in the background that is now part of a larger story and you wonder “how many times did I tell her I love her that day?”

Maybe it’s not your daughter. Maybe it’s not your child at all. Maybe it’s your husband or your mother or a very dear friend. Maybe it’s your first season without them or your 20th. In my third this year, it hurts worse than I expected it to because she’s still gone. And she will be gone for the rest of my life and something about that just can’t be explained to people who just don’t know. Something about that kind of pain longs to be felt, explored, examined, revered and honored, but in doing so you feel you could die from how much it hurts.

If you have read this far, somehow I think we might be feeling the same things this holiday season. I don’t have a Thanksgiving table anymore, but if I did, know that you would belong there. For whatever reason you are hurting this Thanksgiving, I see you. Lord knows I don’t know how to help, but at least you know you aren’t alone in my house and in my world. I’m grateful for those who see me and welcome me with open arms despite how very hard I am to love right now and I pray that you feel the same, even if it’s just from this. I pray for a peaceful and gentle Thanksgiving to those who are hurting and I send you my love all the way to Kate and back.

Kate, I love you. I miss you. Best friends forever. I promise.

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.