There is lint on the cold, beige tile floor. There is always lint on the floor but, this morning, it is particularly annoying. I’m on my fourth load of laundry in 48 hours and this time I mixed my husband’s lights with my reds. His favorite khaki shorts are slightly pink. I tell myself he won’t care.
I hear my leftover fried rice buzz in the microwave so I speed up a bit. It’s what I eat for breakfast the day after I have Chinese food for dinner. It’s also my comfort breakfast when I’m depressed.
I drop the basket of reds and slightly pink lights next to the baskets of unfolded towels that no one will touch until I tell them to and grab my depression meal. I got difficult news yesterday, and this is how I am coping.
We are a Marfan’s household. I have Marfan syndrome, a connective tissue disorder that is often referred to as a congenital heart disease, because the most important connective tissues in the body are in the heart. But it can affect any of the connective tissues in the body, including the knees, elbows and eyes. About 75 percent of people with Marfan’s get it from a parent. In my case, though, neither parent had the disease. But two of my children, my six- and three-year-old, have been diagnosed with it. Yesterday was the first time in the three years since their diagnoses that I found myself sobbing over what that means.
When I was 20 years old and a junior in college, I went in for a pretty routine chest x-ray (called an “echocardiogram”) and was shocked to hear I needed emergency open heart surgery. I was still covered under my mother’s insurance at the time, so I didn’t have any concerns about health care access. But the idea of stopping my entire life, changing my diet, prepping my body for surgery and pausing my studies was terrifying.
I fell into a deep depression. Afraid I wasn’t going to wake up from surgery or that, if I did, I wouldn’t be able to finish school on time or at all, I recused myself from many of my social circles and isolated myself from everyone except my partner, who is now the father of my children and my husband of nearly 12 years.
So he understands this Marfan thing. He has seen me struggle with it.
After that surgery, he and his mother nursed me back to health. I was unable to stand or sit up on my own, and they gently cared for me for six weeks as I recovered. I had to learn to breathe on my own. Walking more than 10 steps left me weary, weak and near passing out. Even something as simple as turning over in bed required minutes of breathing, preparation and pillow-assisted exercises to perform on my own.
I was just 20 years old, and I was trying to train my body to work again.
I was diagnosed when I was 13, and I had already been subjected to years of tests, medications, follow-ups, pokes and prods. I am 6 feet, 4 inches tall — a hallmark of the disease — which meant I spent more time being gawked at by doctors than spoken to.
The medication I took caused fainting spells. It made me sleepy and irritable when I wanted to hang out with friends. It, along with the Marfan’s, took so much from me. I didn’t want it to do the same to my children.
So, recently, when doctors told me that my six-year-old was showing signs of an enlarged aorta that could require surgery, my heart dropped into the pit of my stomach. She’s nothing more than a bundle of knobby knees, goofy phrases and hope at this point. She spells “like” with no “e” because she prefers it that way. She would rather wear the same pink skirt three days in a row than put on a purple one.
She is perfect, and weird, and chatty, and giving, and sweet. She is only 6. How dare Marfan’s — or anything else — try to take any of that away from her?
As a queer black woman in America, I know that “normal” isn’t a thing. I know that I can’t protect my children from everything. I am not naive. I know my children will have to face the realities of the world before them. As black children in this country they will probably have to grow up too early and on someone else’s terms, without their consent, no matter how they — or I — feel about it.
But that doesn’t mean I am not going to try to lessen the impact that will have on their childhoods. The medical situation, though, angers me, and it hurts.
Being a black woman in America has meant that I have become adept at navigating the complexities of public space. As a queer mother, I have all but mastered the daily process of encountering microaggressions, and have attempted to control my environment as much as possible to reduce unwanted interactions that remind me how unfair the world can be.
But, having a disability and raising kids with disabilities reminds me that some obstacles are simply out of my control. They show me that — regardless of my relentless focus on minimizing risks and maximizing benefits — my body and my kids’ bodies will just function as they will. They may not follow any rules. They may not perform in ways that are predictable or even reliable. And, while I understand and accept this truth, it is still a difficult part of my reality that I must confront every day.
So, yes. This hurts more than the stuff under my control. It hurts more than my lived realities with racial bigotry and the resentment I experience when I glance across the news cycle. I can prepare myself for those things.
I keep telling myself my kids will be okay. I say it out loud, half attempting to convince myself and half attempting to fend off an onslaught of emotions.
“Maybe I wasn’t ready. Maybe I just need to toughen up.” As a parent with disabilities who parents children with disabilities, these are the things I tell myself. I don’t have all the answers. I’m just doing the best that I can.
Today, all I know is that I am crying into a bowl of fried rice. I have four baskets of clothes to fold. It is Friday. And we are a Marfan’s household.