I met little Harper, her Mama and Aunt at 6am in the waiting room at UCSF. It was a first meeting but like all families I work with none of them feel like strangers. It’s like I’ve walked all the miles in all the shoes…they all just seem to fit. As we walked back to Harpers room I peered into the familiar rooms…the ones I’ve been in with Riley awaiting anesthesiologists and surgeons…I feel like a part of me still lingers in each of those spaces, like fragments of my soul are on the damn wallpaper or something…I get the urge to walk in and whisper to the curtains “It will be ok” but I refrain because the thought is poetic but the act?…that’s maybe crossing to crazy. I clicked away and chatted while they waited, entertained and soothed a baby who’s done this enough times to know what’s coming.
Her blood curdling screams at the eyedrops and how she’d calm down just in time for the next set. So familiar. The cries that are so intense there is actually zero sound…just a wide open mouth and bright red face. You don’t “shhhh shhh shhh” them because there is no sound to shush…you encourage them to breathe because they aren’t. Too familiar.
After they took her back for her procedure we all went down to the cafeteria and swapped stories…laughing about how bizarre our lives are to pass the time until Kelsie’s phone rang. The doctors would be looking into Harper’s eyes…well her eye. One has already been removed due to the tumor rendering it unsaveble. They were looking for more tumors, signs of progression…if it was there they would do a procedure right then. If all looked clear then they would wheel her back to recovery where the anesthesia would wear off right as her anger for being NPO for 12 hours would rise.
We made our way back to the waiting room and as the doctor began leading us into the little office where news is delivered he turned and spoke “Everything looks great…” Man, can I just say…I love when they do that. Just spit out some good news quick so you can exhale. That whole waiting until your ass is in the chair thing…not cool. Give the cliff notes on the walk…details at the table. Anyway…details were given at the table…the news they’d wanted they got. No new tumors, still cancer free. To be in a room when someone gets that kind of news is in fact pretty magical, who gets to experience that sort of joy? I do and I don’t take a single second of that for granted. In fact I bottle it and call on it for strength in the moments I witness that go the other direction. Now here is the thing about cancer. The second they got the answer they wanted…the question gets asked again and they won’t get their answer until next month. Every month…same time…same place…same question. For the next…oh…5 years or so. Just as you let out that sigh of relief you take in a big ol’ breath of “what if” and hold said breath for 4 weeks. You get used to it…you do. The situations you once could have never imagined are now penciled in as weekly appointments. Other peoples worst nightmares are your Tuesday mornings. It makes you weak and then strong…cry and then laugh. Crumble and then for some…create.
The Mark Makers exists because I crumbled and the only way to put myself back together was to create. To create meaning, to create purpose, to create connection, to create income that enabled me to care for my complicated child, to create something beautiful out of the horrors that is pediatric illness. Kelsie, like myself found a way to create. She turned a hobby into a business…a business that would serve her creativity and help support her family. Kelsie makes the absolute most adorable handmade bows, bows with a purpose. And let me tell you she is not stopping there. This is a mama with a heart of gold and a mission to bring good into this world thriving off the heartache she has endured.
How lucky I am to connect with these mothers…mothers like me who fiercely love their little patients and don’t stop there. I cannot wait to watch Miss Harper grow…to capture their bond, to support her healing and their mission. Get ready…you’re going to be seeing a pile of precious hair accessories on the heads of my little ladies and you will now know they are so much more than sewn fabric.
To learn more about Kelsie and Three Tiny Knots please visit…www.threetinyknots.com