I’m saying thanks today. Thanks you, and you, and you in the corner. Thanks you, all of you, for everything.
For the last 5 months (it’s hard to write that, actually) we’ve been in absolute crisis mode at my house. In early March, my daughter started throwing up. And throwing up, and throwing up, and throwing up. I figured we were in the middle of a winter stomach flu, like every other kid we knew. From the time school starts in September to the time we finish in May, my kids always get at least one major flu. It’s just part and parcel of being a kid. But after a week of my Sofie throwing up around the clock, we went to see the pediatrician. The doctor ran a few tests and sent us home. It was the flu, we were told, so we went home to ride it out.
Halfway through week two of round-the-clock puking, we went to Instacare. Sofie was throwing up between 10 and 15 times a day. She had lost 10 pounds in 14 days, she was pale and listless, and I was officially worried.
The doctor at Instacare took 8 vials of blood, ran 2 bags of I.V. fluid, and sent us home. School was out of the question. My girl was up all hours of the night and day, vomiting over and over, and over again. She slept with a puke bowl next to her head and ran to the toilet constantly. I wasn’t sleeping, my girl wasn’t sleeping and we got run down really, really fast.
I know how to do long-term sickness better than anyone, sadly, so I did what I do, and started making lists. I did research in-between work, and ran the house like a general. We borrowed dozens of movies from friends, went to the library to check out stacks of books, had friends bring home homework from the Junior High, loaded up on Gatorade and ice cream, and got into a basic sick-kid routine. Sofie and I got up every day and did the same thing: get my little guy off to 3rd grade, push meds, push hydration, watch movies. We tapped companionably side-by-side on our laptops while we watched every movie known to man, until my son came home and we all left for afternoon swim practice. Then it was dinner(ish), and bedtime.
About every other week, we went to the Emergency Room to get re-hydrated with I.V. fluids. Sofie did homework and annotated books while I made bad jokes about teen pregnancy (every.single.doctor. ran multiple pregnancy tests. That got old pretty fast.). That’s while she’s giggling in the photo below.
We live near one of the world’s best children’s hospitals Primary Children’s Hospital, where over the course of several months we met with almost every pediatric specialist available. Our pediatrician called almost weekly at the end of his workday, to check in and offer comfort and new theories about what this illness could possibly be.
We tested, and tested, and tested some more. DNA tests, obscure autoimmune blood tests, MRI’s, CAT scans, CT scans, gastric emptying studies. Every day was filled with specialists and nurses and blood draws.
Sofie remained calm and collected. She stayed on top of her homework, dragging books and tests and math homework everywhere we went. We became friends with the nurses and doctors in the E.R. I hauled my laptop around with us, meeting deadlines by working through middle of the night urgent visits to the emergency room, in the dark of hospital rooms while my baby was infused and medicated.
At some point, I hit my limit. I cried myself to sleep every night in order to keep a brave face for my girl during the day. I figured somehow, some way, there had to be a lesson in this. What was the point, if there wasn’t a reason? I’m not sure there’s a reason for suffering, but sometimes life needs a silver lining. So I decided it was time for hope. Hope and love and universal kindness and support.
I reached out to all of you, asking for help and good vibes from across the globe. I started a hashtag called #HopeAndLoveForSofie. Every time I found a heart, anywhere, I posted a photo on Instagram and Facebook and Twitter.
I knew Sofie needed some outside encouragement so I asked the universe to send us hearts, and happiness, from everyone. And hundreds of you responded, taking photos of a heart in your morning coffee, heart shaped clouds and leaves and shrubs, hearts in the sand with Sofie’s name in the middle. Hearts from all sides of the world.
Hearts in the floor tile of my master bathroom shower.
My friend Kirsten found a heart in the sky at an air show.
My friend Ruth found a sea glass heart. Happiness, all around.
Sidewalk graffiti heart in Chelsea, NYC from my friend Kris.
My friend Erin painted a photo of Sofie, with a heart in the corner.
My friend Ez has been finding them everywhere. This was her daughter’s breakfast cereal (a daughter who’s coincidentally the same age as my daughter).
My back-door-neighbor and friend Ellen ‘heart attacked’ all our windows during the night, the day after I asked all of you to find hearts. A lot of you sent packages and goodies to keep my girl sane. Notes, emails, FB messages, and hearts poured in and we definitely felt #HopeAndLoveForSofie.
So thanks. THANK YOU. Muchas gracias. Danke. Ddziękuję.
It means so, so much.
It’s teaching my girl that when you need help, it’s okay to ask. That people are mostly kind and amazing, and looking to help the rest of us out. That when it’s her turn, when she’s well, she will know what to look for, and how to help those who don’t know how to ask for help.
These are massive life lessons for anyone to learn at any age, let alone 14, and you’re to thank for that. It’s a big deal, and I’m forever and ever grateful, amen.
We’re still struggling, big time. We’re 5 months into this illness, and we’re all tired. We’re worn down, we’re tired and discouraged. The house is a mess. I’m holding on to my routine and my work and my life by a thread. A tiny, little thread. We have entire days where we all just cry. Because it’s not fair, and we don’t have answers, and we’re done. Nada MAS.
I routinely get in bed at the end of the day (6:30 pm after swim) and just sit. I lie back with a frosty cold caffeinated beverage and read terrible books from the library. I look at the ceiling and try to find answers in the textured paint. I haven’t found any so far, but it hasn’t stopped me yet.
I’m eternally optimistic; always have been.
So thanks my friends. Thanks to all of you, strangers, friends, new friends, acquaintances, old friends, family. THANK YOU. It redeems my faith in humanity that you’re all out there looking out for one another, and for those of us who can’t quite look out for ourselves.
If any of you are interested, my dear friend Nancy has set up a job chart of helpers. It’s basically a job chart, anyway. Email Nancy at: Rally4Sofie@gmail.com if you’re interested in helping from a-near or afar. Nancy is a dream come true and is lining up all manner of help while we can’t do it ourselves. Thank you, all of you, for being made of magic and wonder. I love you. We love you. THANKS.