Christmas cards are an inescapable fact of life these days, especially if you have young children. Like us, most of our friends have little kids, and many send cards every year. In our house they decorate our refrigerator. As I grab milk for my coffee each morning or pull out the night’s dinner ingredients, I can’t help but catch glimpses of my friends’ families. There are matching outfits, carefully staged poses on carpets of grass, and impossibly wide smiles. Cherubic apple-cheeked babies lit by halos of sunshine, lying on brightly colored rugs. Little boys and little girls caught mid-smile, mid-leap, and mid-laugh. These are families as they are supposed to look—bright eyes, strong limbs, and able bodies.
My daughter, JJ, received her diagnosis of Rett Syndrome four months before Christmas. Those months were filled with many things, but none of them are something you would want on a Christmas card. There were visits to doctors and long drives to specialists. Reams of paperwork to secure a spot in a special education preschool. New medications, new directions for therapies, and new medical equipment. A five-hundred-page Rett Syndrome Handbook. No one in our family had time to sit on carpets of grass. No one wanted to smile, let alone leap in the air. One of us couldn’t leap into the air, even if she wanted to.
It was not an easy time and the Christmas cards weren’t helping. Sometimes multiple cards arrived on the same day. I would open them, one after the other, and stare down at all the smiling faces, not knowing what to do with them. I couldn’t bring myself to put them on the refrigerator anymore. Twelve months of looking at those strong, healthy bodies? I couldn’t stomach it. Instead, I shoved the cards to the back of a cubby-hole in my desk—something to deal with another day.
It was a batch that arrived two days after Christmas that finally broke me. Three cards arrived together, each sweeter and more sunlit than the last. I looked down at those lucky children whose limbs, minds, and genetic code all worked the way they were supposed to, and the tears came. It felt so unfair. Those children had bodies that did what their brains told them to do. They spoke effortlessly. They could grow up to be whatever they wanted: dancers, accountants, football players, or computer programmers. A future of high school dances, SAT prep courses, marriages, children, jobs, and mortgages unspooled before them. I could imagine none of these things for my youngest daughter. Barring a miracle drug or gene therapy, JJ would never have the skills to leave home. She would stay with us—sweet and quiet and vulnerable—and I would continue to act as her voice, hands, and protector as long as I possibly could.
Part of the reason for my grief was the sudden progression of her disease. In the spring she had hands that couldn’t do all the things hands are meant to do, but she could manage some things. She could crinkle tissue paper and enjoy the sound and texture of it. She could splash water in the bathtub. If we loaded it for her, she could lift a fork to her mouth and take a bite. But by December she did none of these things. Her hands sat limp in her lap, or she would wring them together uselessly, as though lamenting all the things happening to her little body. At the beginning of the summer she could walk on her own, but two months later her steps had begun to falter. She lurched around the room like a tiny drunkard, knocking into walls and pieces of furniture. By fall she could no longer take any steps on her own. If we let go of her hand, she would wobble and crumple to the floor. It was one of the unexpected regressions that can happen to children with Rett Syndrome. With no warning, they rapidly lose skills they had mastered, and no one can say if those skills will come back. My husband and I spent the late summer and early fall donating toys our daughter could no longer play with, procuring a gait trainer to keep her safe and upright, installing ramps in our living room, and holding each other with all the force we had every night. I wish I could describe the grief those changes brought on, but it’s not possible. Even though I’m a writer, I don’t think I’ll ever find the words.
These were the things going through my mind as I stared down at the holiday cards sent by kind, well-meaning people whose lives used to look like mine, but who now seemed like alien creatures I barely recognized. A child who is so different, a future full of such wild uncertainty—these things separate us from the people around us. It may not be something we want to acknowledge, but the separation also makes us angry at those people. Once I lost the future and the child I thought I would have, I began to feel things I wished I didn’t. I felt jealous of my friends and their healthy children. I felt angry at people who complained about anything that wasn’t a small child’s suffering. Most of all, I felt resentful toward a world that continued on around us, oblivious to our pain.
As special needs parents, I imagine we have all felt this disconnect. Not everyone can understand the uncontrollable, uncharted path of our new lives and the troubling, inescapable feelings that rise up in its wake. As much as we wish there were a way to explain what it is like to travel this path, there simply isn’t. We don’t have the vocabulary to describe it to someone whose life remains unchanged.
We all react to this disconnect in different ways. Some of us refuse to admit it is there, pretend to lead the lives we always have, and try to connect to the people around us in the ways we did before. Some of us drown our differences in alcohol, drugs, television, or food. And some of us do what I had begun to do—cut ourselves off from the rest of the world. I thought that if I couldn’t erase the new disconnect in my life, at least I could control it. I could push away my friends and their healthy, happy children before they made me feel those shameful things that turned me into an ugly, distorted version of myself.
JJ’s ghost—the child she could have been without her disability—hovered over every social interaction. When I spoke to my friends and family, I was only partially present in any conversation. All I could see was this difference, this one significant way in which I was no longer like other people. While we talked, my thoughts always traveled along the same track. You don’t understand. You don’t know. You have no idea. Everything was slotted into a hierarchy of pain: Is yours lesser or greater than mine?
In the fall and winter after JJ’s diagnosis people talked and talked and talked around me. About plans for the holidays or vacations they were going to take. About their children’s dance lessons. About the difficulties of juggling a job and daycare. About a funny thing their son or daughter said. I didn’t care about any of it. I was too busy measuring it all against my own life. Our holidays would be spent caring for a child who could no longer use her hands. Vacations? What were those? My child would never take dance or say cute, funny things out loud. I’d given up the career/family juggling act when I quit the job I loved to care for her. I couldn’t relate to anything these people were celebrating or complaining about. After all, what does someone who worries about tantrums and takes their kids to dance lessons have in common with someone who worries about their child’s life expectancy and carts her to multiple therapies and medical appointments?
Thankfully, I have a wise, kind-hearted therapist I talk to regularly. She is an older woman who has raised a special needs son herself. She has spent decades both learning about how people process emotions and thinking about what it means to have a child who is different. She was the perfect person to talk to about the new disconnect in my life. So I told her about my anger and the relationships that were beginning to fray. I wanted to do something before those threads snapped completely.
My therapist has mastered the art of giving simple, insightful advice. She reminded me that I still had things in common with other people. “You’re more than JJ’s mother,” she told me. “It’s okay not to talk about that part of your life. It’s okay to talk and think about other things.” I realized she was right. I was more than a special needs mother. I was also a runner, a writer, a book lover, a wife, a world traveler, and a language learner. In my pain, I had forgotten most of this.
After we become special needs parents, it’s easy to discount the other roles we fill. But even if our child takes up ninety percent of our time, the ten percent we spend on other things is vitally important. It’s a percentage we can’t afford to ignore if we want to stay sane and keep the relationships that are important to us. It’s the bridge that connects us to the other people in our lives.
After I spoke to my therapist, I decided to be honest with my group of close friends. These were women with whom I had a good amount in common: We had two sets of girls around the same ages and had been in a book club together for years. In a text message I admitted I was finding it too difficult to talk about our youngest daughters. The stories they told about their children were just too painful. They reminded me of all the things JJ would never do. But let’s talk about other things, I wrote. Our oldest daughters, books, movies, politics, romantic relationships. Anything else you want. These were women I loved, who had stood by me, who had always accepted me for who I was. I was determined to hold onto these friendships. I had lost enough already. Our paths had diverged in a significant and unforeseeable way, but we could still travel our separate roads side by side.
I don’t know which relationships have come untethered for you since you have become a special needs parent. I’m guessing there are at least a few. I hope you have not let those people drift out of your life. (Unless they weren’t worth keeping there in the first place). If, like me, you are struggling with the disconnect between your family and theirs, it’s worth keeping that ten percent in mind. The differences between our lives and those of other people are not likely to go away, but they will fade more and more with time. If we want to stay close to the people who love us, if we want to nurture friendships that made us happy before, then let’s not forget what we have in common with the rest of the world. We are the sum of our parts. No one is just the parent of their child. We are all so much more than that.
We are linked to the other people around us, however different they may seem. We might never have Christmas cards that look like theirs, but we have beautiful children we care about. We have families worth celebrating. We have love in our lives. These might not be things that can always be captured in a photograph, but they’re there and they’re important.
There is a caveat, however. If we sometimes have to turn away from other people’s good fortune, able bodies, and ordinary struggles, that’s okay. It’s what we have to do to get by. We’re allowed to skip parties we know will make us sad, redirect conversations that stir up grief, and put Christmas cards in a cubby-hole for another day. There will always be something we need to shove away in order to maintain our sanity. The people who truly care about us should accept that.
The role of special needs parent doesn’t get easier, but it does become more manageable. My daughter’s diagnosis and the wounds it has caused are still fresh for me. But with time, I think that pain will fade. When it does, I hope the people I care about are still in my life and that I have found a way to be happy for them. Someday—one year or two years or ten years from now—I’ll stop hiding their cards away in a cubby-hole. Someday, I’ll have the strength to put them back in plain view.
Which relationships have changed for you since you became a special needs parent? In what ways are those relationships different now?
Leave a comment and tell me below.