The Art of Disability Parenting - Six Mothers Share Some Tips

By Maureen Swinger

DECEMBER 20, 2021

“Jean needs to get out of the house. Can you get her over for a campfire or something? She needs a good laugh.” The text was from Reuel, in the hospital for the fourth time this year with their son Robert. “On it!” I zapped back – no hardship hanging out with my friend. We had the campfire, we had the laughs, but (and I daresay Reuel knew this was going to happen too) we also had some tears traitorously raising the water levels of our gin and tonics.

Sometimes you can’t party yourself out of dread and uncertainty. Sometimes you’ve prayed all the prayers you can think of, and still your child is in fragile condition in the ICU. Robert has cerebral palsy, and he has weathered multiple complications in his seven years. I don’t know what that’s like, to mother this beautiful boy through every hour of every day. I knew how to sister an amazing brother for thirty-one years longer than the doctors thought he’d be around. But much as I loved my brother, sistering is not mothering.

I think of my own mom, Mengia, who loved Duane so fiercely and proudly, who still gazes at his photo every day ten years after his death with a look that says, “I got to be his mother.” She’s an honorary grandmother to Rob too, and an advocate for the disability community in our neighborhood. “Of course it’s hard,” she’ll say. “But it’s hard in a different way than people might expect. And it’s much more wonderful than they can imagine. I’m sorry for people who are scared of suffering. I don’t think they will end up knowing how to live.”

I asked some other mothers around the world who do know something about how to live: how do they help their children navigate disability in a world that’s not always welcoming? Here’s what they told me:

Jean, mother of Robert
Montgomery, New York

Robert has fiery red hair to match his fighting spirit. He has had to fight all his life for all the things most of us take for granted: breathing, eating, moving, staying warm, and sleeping. Innocent suffering is the hardest thing to see; for a mother it’s like a sword in your heart that never goes away. But when he smiles I feel like I’m connected to something deep and beautiful. Physically, he needs help every moment of every day. Spiritually, he gives us the gift of being needed and loved.

It’s impossible for outsiders to imagine the daily effort it takes to care for a child with profound disabilities. Sometimes I feel like a Titan; I can take on the world to make it roll for him. Other times I have to give myself a pep talk to get out of bed.

Then there’s the toll of constantly having to make decisions that could have a huge effect on his quality of life. It’s hard when my husband and I disagree about a treatment plan, or whether or not he should come to an event. When the child we both love intensely is sick, or needs a medical intervention, tensions run high and little things can set us off. We each handle a crisis so differently and we’re both raw and hurting in different ways. But we’ve also learned to work together and forgive.

Robert grounds us to taking a day at a time – it’s the only functional way to survive. No matter what else is happening – a world crisis, a personality conflict, a family upheaval – he still needs the same care, and this is surprisingly freeing and rewarding. It hurts when he doesn’t respond how I imagine a child would to something kids typically love, like festivals, birthday parties, camping, or Christmas. I’m thankful he has friends who gather round him and celebrate with him in Robert-style.

The best support are those friends who choose to enter our pain and stand by, even though we are faced with problems we can’t solve. Often these friends are carrying their own crosses bravely. Sometimes I feel like wearing a sign, “Don’t talk to me until you’ve walked with me.” Still, to those who want to help, but don’t know what to do or say, something is better than nothing. I’d rather have people say the “wrong” thing because they care than to ignore us for fear of offending.

When Robert was a few months old and I was still in shock, I met Barbara, a mom of an older child with similar challenges. She welcomed me with such warmth and rock-solid faith: “You are setting out on a wonderful journey. Your son’s soul will always be free! There will be pain and it will be hard but when other mothers are aching for their children’s souls, you will know your son is free.”

In his vulnerability, Robert is able to cut through the fluff of our human ideas and agendas. He takes us to the place where there are no answers. He allows those he touches to feel love. We know it is changing the way his siblings see the world. What is success? What are you going to go out and live for?

Berky, mother of Sebastian
Walden, New York

Sebastian is funny, loving, and caring. He enjoys riding his trike, swimming, and going for car rides. He loves music, and his interpretation of singing! He was born prematurely at twenty-three weeks, weighing one pound. He uses a wheelchair, is blind in one eye, and has a low IQ. He fills my heart with joy.

Before he was born, doctors had told us he may not survive, that we’d be better off aborting. As if he could not have joy in his life. The total opposite is true. We are all the richer. People have sometimes treated us with pity, as if our life must be so much worse than another family’s without this challenge. Is it? Our challenge is different, but not worse. Other children can make terrible decisions that hurt their lives or their families. For sixteen years, Sebastian has only given us love.

Jo, mother of Moy Moy
Dehradun, India

Moy Moy is from a remote village in the Himalayas. Her birth mother attempted sterilization after her twelfth baby, but Moy Moy was conceived anyway. Determined to get an abortion, her mother came down to Dehradun – and chose the one obstetrician in the city who doesn’t do them. She decided to go through with the pregnancy.

A few months later, coming for a routine prenatal appointment, she went into labor on the bus. The bus pulled over and Moy Moy was born on the side of the road – twelve weeks premature, weighing in at two pounds. Her mother wrapped her up in a shawl and brought her in to the hospital, where a doctor said her sister would adopt the baby. The sister was me. And the baby, miraculously, against all odds, came into our lives and changed everything.

She wasn’t meant to be conceived, but she was. She wasn’t meant to be born, but she was. She wasn’t meant to survive, but she did. She wasn’t meant to be our daughter, but she most certainly is.

If I could advise my former self, the bewildered new adoptive mom, I would say this: You don’t realize it yet, but Moy Moy’s disability is going to be your ticket to a new life, a life you could never have imagined. She’s going to introduce you to some of the most amazing people on the planet and you are going to laugh louder, dream bigger, and care more deeply than you ever thought possible. She is going to teach you about a whole new world beyond ambition and personal striving. She’s going to show you a different way to live.

One highly qualified doctor is going to tell you, when Moy Moy is three and you already know that something is up, that she is perfectly fine and you have nothing to worry about. Another will tell you that she will die by the time she is nine. They may know more than you do about this syndrome or that genetic disorder but you are the world’s foremost authority on Moy Moy. No one knows her as well as you do.

That said, you think because you are young and self-reliant that you should handle this all on your own. But you can’t and you shouldn’t. It’s not good for you, it’s not good for Moy Moy, and it’s not good for anyone else. People are out there just waiting to be asked. Moy Moy is bored with your face being the only one she sees every single moment of her day. The fact is: everyone needs a social life. Everyone needs something to look forward to and everyone likes a little fun.

Look around! Reach out! We think we can’t just walk up to a person we don’t know and try to make friends. I learned from Moy Moy that we can.

Jeanie, mother of Sarah and Serin
Gangwon-do, South Korea

When Sarah was born, we had no idea there was anything the matter until she started getting major seizures at nine months. We had tests that showed delayed development. She was my first child, so I didn’t know what to look for. I thought, maybe she will get better with therapy. At eighteen months, she spent her mornings at a special needs center, but when I watched her through the window, she didn’t have any expression on her face. She sat there and did nothing. I ended up bringing her to the daycare where I worked. Suddenly, she was all over the place, crawling up the stairs to the little attic with the other children, pulling toys around, laughing.

When Sarah was two, our son Sejune was born, and Sarah was so happy for a baby brother. He had no developmental difficulties. Our little family made the big journey to England to join the Bruderhof communities.

A year later, our Serin joined the family. With Serin, you could see right away that something was different. Most babies have this kind of bouncing strength, and she didn’t. She couldn’t suck, and her head was always drooping. It was a big shock for us, and we had no medical clarity on why this had happened to both our daughters. Both girls thrived in the communal setting, but we still struggled to balance their needs and (for my part) graciously accept the help offered! It’s not in my nature, and when a cheerful young woman would show up to lend a hand, it took a new kind of grace for me to say, “Yes, thank you, that would be great,” rather than, “No, we’re doing just fine.”

Sarah loved her friends and her school. Even though she had to contend with seizures, and mobility was difficult, she was not really aware of her difference until high school. She met someone on the bus who asked her point blank, “Are you disabled?” That evening, she came home and asked me with equal directness, “Mom, am I disabled?” It broke my heart.

Serin’s path is different. She needs more physical care. She can speak a few sentences of three or four words, but they’re the ones that matter. “I love you.” “You’re not happy.” (And if you’re not happy, you need to go do something about it, or she’s not happy.)

Now that our children are young adults, our patterns have shifted. Sarah and Serin join in the work and life of the Darvell community in England with their caregivers. My husband Kevin and I, my father-in-law, and our youngest son, Seroo, are living at Baeksan House, a small Bruderhof in Korea, while Sejune moved to London and became a physical therapist.

I’ve noticed something about our new family dynamic. We’re always squabbling! Much as we love each other, we miss our daughters’ influence. For their sakes, because of their sensitivity to any tension, it was important that family time was grounded in peace. Whether we got there through singing, prayer, reading, or quiet, we prioritized it.

Now, four opinionated people sit down to dinner, and wow, let the brawls begin!

Hedwig, mother of Patrick
Kent, England

Patrick has a cheeky smile, a big belly laugh, and the capacity to talk to anyone. In fact, you will not be able to escape a conversation with him; like it or not, he will ask you: “What did you have for breakfast? Did you have any dreams last night? What will you do today?”

Ever since Patrick was born and we found out that he would have lifelong challenges due to a chromosomal condition, I go through times where I feel a sort of tension, a space between guilt and grief that explains the hurt but doesn’t put shame anywhere near an innocent child. I don’t want to inconvenience anyone, but I feel like that is what we are always doing. We rely on the help of friends, neighbors, medical professionals, teachers; you name it – we seem to always need it. And there is also an intense grief, because Patrick suffers, although he has never cried in pain. Not even when he shattered his ankle. He did groan, but he didn’t cry. When he had internal damage to his knees from incorrectly adjusted orthoses, he kept on walking. He could not say, “My knees hurt.” He just got angry with everyone. Although he is incredibly verbal, he cannot tell me if he is hungry, thirsty, tired, cold, hot, or in pain. There is a link missing that we have not been able to find.

I feel that somehow because he is mine, because I bore him, his suffering is my fault. Don’t tell me: “You shouldn’t feel like that. It’s not true.” Because it’s how I feel – not all of the time, but sometimes. Then there is the protective mother lion in me that will stop at nothing to advocate for my child. To make people understand what he needs and to make sure he gets it.

People say things like, “Sure, we’d love to have him over any weekend for an hour,” but when you’ve tentatively asked three times over the course of a year, and it never seems to work, you certainly never want to ask again, and you’re mad at yourself for asking, and at them for offering and not meaning it. But there are those who do. Patrick knows where he’s welcome! His current caregiver just told us, “This is my dream job!” No one has ever said that to us before.

You don’t choose your family, although with selective abortion some people try. I could never do it, and I say that now more than ever; now when Patrick at fourteen is as tall as me and it takes all our strength and ingenuity to figure out how to get him to do what he doesn’t want to, from eating a decent breakfast to taking a shower.

Are there happy times? I’ll say. Patrick is pretty darn smart and hilariously funny. He has endless terms of endearment and nicknames for his favorite people. Catching sight of me after a day at school, he announces, “Woman in Love!” in his raspy, half-broken bass bellow, “I love you in my heart!” And I am bestowed a bone-crushing embrace and an enormous wet smack of a kiss.

There are also times that make me marvel at what he understands. Patrick may not have the ability to tell us what’s happening within his body, but he has an incredible sensitivity, a sixth sense, for a different communication. There are times when he shows such an empathy for others who suffer, and a lively connection to a very real and living God.

Every year at Easter we have the worst behavior of the whole year from him. He breaks toys, kicks walls, yells, disobeys, snaps his glasses in half. This year on Good Friday we finally realized why. Our church gathered for a service in the nearby cemetery, where three crosses were erected. We read the stories of Christ’s torture and death. Patrick sat silently, chewing his nails and grinding his teeth. “Were you there when they crucified my Lord?” we all sang. He had been singing this to himself for days. But as usual, he did not join in when there were others singing.

After the service we had a day off to reflect and take time to think of Jesus and his sacrifice for us. During dinner, Patrick turned to me and said, “Mom, who will go to the cemetery and take Jesus off the cross?”

“Were you there when they crucified my Lord?” Patrick was. For him it’s so real it happens now.

Patrick has disrupted our lives in a way we would never have imagined. He keeps doing it over and over again in ways that surprise, elate, exhaust, and exasperate us. And the challenge to us is to welcome the disruption.

Gretchen, mother of Alan
New South Wales, Australia

Thank you for asking me to tell about Al! You wouldn’t believe what an affirming thing it is to see his name in print. To go weeks, sometimes even months without anyone saying anything about him or even speaking his name is very hard. It’s been almost two and a half years and it seems like forever since we last saw him, but also like just yesterday that he died. I’ve tried and tried to think what I could say about him, but I came up short every time. So I ended up writing to him instead:

Dear Al,

As I sat down to write to you, I had the sudden peculiar feeling that you were right here at my elbow, watching what I was doing. I knew instinctively what was coming next. You were going to take my pen away and tug on my hand till I came along with you for a walk outside or a family joyride. It makes me laugh, it’s all so familiar. Unfortunately, it is just memories. And so I am left sitting here with a pen in my hand.

You were the sweetest baby in the whole world. Perfect, although the medical world saw you with very different eyes. They saw anomalies, abnormalities, handicaps, significant cognitive and developmental delays, a seizure disorder, and a life expectancy of months at the most. Pain and suffering were your constant companions. Surgeries and trips to the emergency room. Sleepless nights and seizures. Do you know how often I prayed that I could take away your pain? It broke my heart. I did what I could, staying by your side, loving you through it all.

But perfection does not depend on a perfectly functioning body. Your perfection was a pure soul and an unconquerable spirit. A wicked sense of humor and the gentleness of heaven. Best friend and hero for your younger siblings, someone for them to look up to and try to emulate. You taught us lessons I hope we had time to fully absorb: unconditional love and trust, childlikeness and vulnerability dished out in equal measure with laughter and high spirits. Tears and laughter, Al. These we had in abundance in the twenty-two years of your life. Thank you.

We were privileged to be together with you at the end when you took your final breath and your soul burst free. I have never felt such grief before, or such wonder and thankfulness.

Now you are gone. Or are you? I guess part of you lives on in us, although sometimes you feel very far away, and I miss you so much. I always try to imagine what you are doing now. Hopefully one day I’ll find out.

I don’t have a tidy way to end this letter to you, Al. It’s mostly just a jumble of words trying to express my love. And anyway, you would never have let the pen stay in my hand this long. For you, words were not that important … just something to fall back on when all else failed. So I will take the hint, and only say once more how much I love you. You are forever in my heart, in the hearts of our family – your family.

Mom.

Maureen Swinger is a senior editor at Plough and lives at the Fox Hill Bruderhof in Walden, New York.