When we first learned our daughter had special needs, my husband mentioned it to his physician at his yearly physical. It turned out that his doctor had a teenage daughter with Down Syndrome and advice for a special needs parent just starting out. One thing in particular stuck with my husband. “You’re going to happen upon some wonderful people on your journey,” his doctor told him. “Some of the best people you’ll ever meet.”
After our Rett Syndrome diagnosis, I spoke to a fellow parent—a woman from the International Rett Syndrome Foundation. On the phone she asked what she could do for me. I told her to give me some hope, that I needed to hear something good in that moment. She described how friends had organized a fundraiser in honor of her daughter and donated all of the proceeds to research. The woman said nearly the same thing my husband's doctor had: “The people are the best part. We’ve come upon so many kind souls since we’ve been dealing with this. You’re going to be amazed.”
My husband and I think about these predictions often. Since we’ve started down this path with our daughter, we’ve come across people we never would have met otherwise—a network of helpers that was invisible to us before. People who believe my daughter and everyone like her matters. People who choose to walk toward pain, instead of away from it. People who see my child instead of my child’s diagnosis. People who want to make her world better and her suffering less. As you might imagine, some of these people are nurses and doctors, but there are so many others besides: therapists, home health aides, special education teachers, bus drivers, scientists, researchers, fundraisers, social workers, paras, and medical equipment suppliers.
First off, there are the people you never meet but whose work and dedication change the fabric of your life and, quite possibly, the course of your child’s disease. These are the ones behind the science and the money, like the academics, scientists, researchers, and drug developers who work toward a cure. But there are also the families who volunteer for trials and drive or fly their children hundreds of miles to pioneer new medications, therapies, and cures. And of course there are people who work tirelessly to raise money for these medications, therapies, and cures—the fundraisers, grant writers, philanthropists, and everyone who donates money to the cause. In the world of Rett Syndrome, as in most others, there are so many excellent examples. The doctor who spent eighteen years of his life creating a natural history study of the disease in order to lay the foundation for future cures and therapies. Or the mother who went from restaurant owner to head of a research foundation that raises millions of dollars for cutting-edge genetic therapeutics.
Then there are the other stories, more humble but no less important. A young girl who forewent birthday presents and asked that people donate to find a cure for her friend’s condition instead. A teenager who created her own online clothing business to raise money and awareness for her sister’s condition. There is an entire world of people who design products, throw parties, and hold fundraisers to raise money for wheelchairs, eye gaze devices, and medications for the people in their lives who need them.
I will likely never meet any of these kind souls. But some days, the fact that they are out there working, fundraising, sacrificing, researching, trying, failing, and trying again is enough to keep me going. Nothing that happens to my family or my daughter can take away that work, love, or sacrifice. Whether my child gets worse, gets better, gets sick, gets cured, it doesn’t change the fact that there is a large and passionate community that cares about people like her.
Then there are the medical personnel we have come across since JJ’s diagnosis. These are the doctors, nurses, specialists, and therapists who have done all they could to make her comfortable, to help her thrive, and to ensure that she leads the best life she possibly can. My daughter undergoes five different kinds of therapies, which means she has a host of therapists rooting her on at every turn. They see her potential and are willing to push through medical barriers and slog through repetitive daily exercises so she can become her best self. Most of these people have come to care more than we could have possibly imagined. One woman taught my daughter to take her first steps and soothed, rocked, and held her in the hospital in the aftermath of an unplanned brain surgery. “I love you,” she would whisper to my girl as she headed out the door at the end of a long day of therapy.
Nothing could have prepared me for this level of dedication and caring from people paid by insurance companies, hospitals, schools, and clinics. To them, my daughter is so much more than a paycheck. She is rare and precious. She contains infinite potential. She is worthy of dignity, respect, attention, care, and love. Every step she takes, every thought she communicates, every object she grasps in her shaky hands happens in part because of them.
These are far from the only people who care, however. There are also the other special needs parents—the ones who offer help and advice, sympathy and strength. I have spent hours on the phone with parents who wanted to offer me hope in the wake of our diagnosis. In the private spaces of Facebook messages, texts, online chats, and emails, other mothers have described their children’s struggles, celebrated my daughter’s milestones, and told me that somehow, against all odds, things would get better. Without this community of people who draw from their own pain to help others, this would be the loneliest of roads to travel. Instead, we travel it together—one smile, one word, one step, one surgery, and one sleepless night at a time.
Since our daughter has begun to struggle, I have also seen the best from the people who were already in our lives. Our neighbors organized a meal train when we returned from the hospital after our daughter’s surgery. A friend from the gym brought by a week’s worth of crockpot dinners. Family members donated to Rett Syndrome research. My mother volunteered to pick up my daughter from special education preschool four afternoons a week. People offered their time, money, kind thoughts, advice, love, prayers, and help, all without being asked.
My husband and I often remind JJ that she is not alone and that she never has to suffer on her own. It is comforting to know the same is true for us. We are never alone unless we choose to be. We are always in someone’s thoughts, even in our darkest of hours. In the wider world, all of us are so often faced with the disappointing side of human nature—nasty online comments, stories of hate-filled people, violence at every turn. But people are not always like this. Often, they surprise you in the best of ways. Show them a family that is struggling, a child who is suffering, and many will do all that they can to help. There are few silver linings in a life like this, but this is one of the very brightest.
There is one more important group of people I have yet to mention. These are the people closest to me—my husband and my oldest daughter. When you have a child with a serious medical condition, it means everyone in your family must work together as a team. You have to shore up your household and strengthen any cracks in its foundation if you want to make it through intact. Many of us manage to do this, somehow, and we manage to do it with love. Life is asking us to bear more than one person could possibly bear, and so we all shoulder it together.
Every day, in hundreds of tiny ways, I am reminded of my husband’s integrity, dedication, and infinite capacity for love. He feeds, holds, rocks, and bathes our child. He walks her to and from our mailbox around the corner whenever the weather permits, and when it doesn’t, he walks her around and around the living room for as long as her little legs can stand it. If she manages to hold on to her mobility, as our doctor has told us she could, it will be in large part thanks to her father. With every new piece of medical equipment he retrofits, every lap he walks with JJ around our house, every mouthful of food he spoons out for her, my respect and love for him grow.
My oldest daughter is no different. We send her up and down stairs, inside and outside, carrying messages and fetching objects we need in order to care for her sister. She does this all without complaint. She doles out hugs and tickles, models going to the bathroom, and explains what her day at school was like to her sister, even though she never receives an answer in return. She pushes JJ in the gait trainer, plays their favorite songs on my phone, and makes contraptions out of paper and tape meant to help with JJ’s therapies. As the disease has closed in, the three of us have kept formation. We’ve tightened our connections to one another and harnessed our collective love for JJ.
Everyone in the world has just been through an extremely lonely time. Month after month, Covid reduced our lives to our nuclear families and our households. For special needs families, this loneliness has been particularly difficult. We’ve been alone with a child who needs not just a village, but an entire county in order to thrive. We’ve spent countless nights lying awake, worrying about the therapies, school support, and medical help our child no longer has access to. We’ve tried to stay in touch as best we could to all of the kind, caring people I mentioned in this post, but it hasn’t been easy. We’ve had to connect to them from behind screens, text messages, emails, telephones, and masks.
Thankfully, this time appears to be coming to an end. As I begin to venture out into public again, I plan to make sure I appreciate all of the people who make my child’s life happier and more comfortable. Now that hugs and handshakes are possible again, I’m doling them out liberally. And if I come across families with a new diagnosis, I try my best to give them the hope they so desperately need. I never hesitate to tell someone about the very best part of the special needs world: the people who are in it.
Who are some of the kind, caring people you have come across since becoming a special needs parent? What makes them special? Do you have any stories you’d like to tell about them?