I
n the years since my daughter’s medical mystery was solved, I’ve struggled to silence the what-if voices that whisper to me in quiet moments. What if we’d figured this all out when she was two? What if we’d figured it out when she was four? What if we’d figured it out at five? What if her care had been managed by a multi-disciplinary team from the very beginning?
These what-ifs serve no purpose. They don’t change anything about the moment I inhabit right now, a moment in which Sammi, my resilient, remarkable kid is currently riding an enormous horse with her best friend after gobbling pizza with her last night and sharing pancakes with her this morning. Her legs fill in her jeans, her cheeks are full and bright and sun-kissed, and I am truly, honestly, not worried about her. The what-ifs can’t touch that. They can’t touch her future.
Still.
Still, they smack my past around like a cat with a mouse. I wonder how the clinginess might have been, the sleeplessness, the tantrums. I wonder how the slow reading might have gone, the pigeon-toed walk, the texture issues with food and fabric. Maybe they would have been no different with accurate, correct treatment. Maybe she’d be a totally different person. There’s just absolutely no way to know.
I wrote the piece below for Role Reboot Magazine because we’re not supposed to look backward. We’re not supposed to engage with the what-ifs. Role Reboot is a magazine about life off-script, against the grain, mucking with the status quo. It was a difficult one to write, but also cathartic. Role Reboot covers a huge swath of topics, and it’s very easy to slide down the rabbit hole of reading one essay after another there. It’s definitely worth a nice long browse.
excerpt from These Are the Things I Will Never Know
originally published in Role Reboot Magazine
…I read to Sammi, as I had to her sister, all the time. We sat together, the three of us, as my finger pointed at the words, and I lent voices to characters and described the pictures. Her sister became a voracious reader. She did not.
Her intelligence seemed just as keen as her sister’s; she navigated the world easily, identified colors and sang songs from memory, but she did not read. She squeaked along in school just at or just under grade level, her frustration with decoding letters into words and words into sentences reaching an explosive level, mediated only slightly with each year of maturity.
I wondered if her inability to eat well was affecting her ability to concentrate. Myriad gastrointestinal issues had kept her from eating more than a few bites of food at a time for years, a schedule not easy to manage during the school day. I knew she was always under-fueled. Could this be keeping her from staying on task with reading?
Her teachers said no. They said she was fine, that some students take to reading later, that she was not flagged for reading specialist support.
However, after a second cardiac surgery at age 8—to free her aorta, curling itself into her esophageal walls—finally gave her the ability to eat well and quickly, her reading abilities jumped several levels in a matter of months. Chapter books and series began to fill the shelves beside her bed. I need the next one, Mommy became a common phrase.
Does that mean that her teachers were wrong? Did she need the better nutrition for her brain to accommodate the reading her grade level dictated, or is this a coincidence of that magical developmental step they said she’d take when she was ready?
I will never know.
by 
by
As a person without children, I can’t speak to your worries except to say that I know I can’t understand them. As a person with multiple disabilities, many of them misdiagnosed for years, I can relate to the frustration you feel because you’ll never know how an earlier diagnosis might have changed a long-term outcome; I feel the same way every day. However, there is one area in which I might be able to give you some insight.
I am, at 32, not quite 4’11. I was given growth hormone injections (actually, I was taught to give them to myself), but–for reasons involving doctors not listening–they didn’t really work for me. I recommend, if such injections are still an option, that you consider them. Being short as a kid is frustrating, but being under 5 feet tall as an adult is more problematic. I have difficulty seeing over counters to talk to service people. Without a stepstool, I can only reach the bottom shelves in my apartment; with one, I still can’t reach the highest shelves. In stores, I often have to ask passersby for assistance in reaching things. My height is among the multiple reasons I don’t drive.
As I’m sure you know, having navigated the disability community for so long, there are always accommodations. High heels can be a blessing. Foot pedal extenders for cars are available. I would likely be more comfortable in an apartment designed to be accessible for a wheelchair user. However, as I’m sure you also know, accommodations are not always easy to come by. High heels have their own problems, and also do only so much. Car adaptations can be expensive, and only work in one car; borrowing or renting a car is much more difficult. Wheelchair-accessible apartments are few and far between.
I give you this information not because I think I know better than you–I don’t, and, in particular, I don’t know your daughter: how she feels about herself, her height, etc., nor how well she can picture the future–but because I hope you might appreciate seeing the perspective of someone who has been there, instead of just saying you’ll never know…though, in my case, the “never know” feeling is strong on this topic: what if the doctor had listened? What if we’d gone to someone else? What if…what if…what if I’d started my injections at 9, 10, 11, instead of 14? Would I be tall enough to navigate the world as a “grown-up”? I’ll never know.
Barrie, thank you for writing. Sammi is now nearly 11 and no longer really eligible for these injections. A close family friend is 4’10” and we spent some time talking with her about whether she regretted her mother never pursuing growth hormone. She does not. We also checked with the doctors to be sure that Sammi would be able to carry a pregnancy and drive a car if she wanted to when the time came, and the doctors felt sure that was possible.
Everyone is different. Perhaps Sammi will come to regret that we never did this for her, but I feel at peace with the decision. Years later now, she is suddenly growing faster — improvements in her health and ability to eat well have made some difference. I’m only just over five feet tall, and so she was never destined to be very tall anyway. We’ll just have to see. In the meantime, she’ll enjoy my favorite part about being short — buying shoes in the kids’ department for half the price!
Ha, yes: I wear a kids’ 3 in shoes! Even though it’s frustrating sometimes to find what I’m looking for, you really can’t beat the price!
I’m also really happy to hear that Sammi is growing; at shorter heights, even an inch can make a difference, so if she’s growing, that’s really all that matters.
And, I’m thrilled to hear that you did ask someone who would know how they felt about growth hormone. I should have asked if you had; I forget how far it’s come since I took it more than 15 years ago. (I never knew anyone who was even offered it.)
Anyway, I was really happy to read your response. I really enjoy your blog (which I found via the linkup on Love That Max).
Thank you so much, Barrie! Sometimes I feel like no one is really reading this blog, so it’s especially nice to hear from people in the comments. As for the shoes, I wear a kids’ size 5, and I especially love that when it comes to the more expensive brands. Same shoe, SO much cheaper!
[…] middle school drama and also, of course, right there on her shoulder blade, slit through twice as doctors pushed her rips apart to get to her aorta. The world, I want to tell her, might never change its heart, might always look right over her head […]