Dear Phelan-McDermid Syndrome,

I’m writing this to you because I’m confused as to why you arrived at our doorstep. Not just you but your friends, polymicrogyria, hypotonia and cortical visual impairment, with their little groupies, seizures, acid reflux and “failure to thrive.” I just don’t understand why you’re here. I didn’t invite you. I was the pregnant woman who ate healthy, avoided my beloved ibuprofen and indulged in an occasional coffee (but immediately worried about it, so I really only ever drank half a cup). So why did you come to torment my sweet baby girl, to try to steal her from us? I did everything I could to keep you away. On the day I was told you were here I really didn’t understand all the ways in which you would impact our lives. Now I do.

Because of you, Bella will never tell me she loves me or call me “Mama.” Because of you, Bella will never play jump rope with her sisters or tattle on them for being mean. Because of you, I will never see her dance at her wedding or chase my grand-babies. Because of you, I sometimes cry myself to sleep. Because of you, I miss things like skiing with my big girls, and I often feel so alone and tired. You affect everyone in our family. Because of you, my husband often goes to sleep alone. Because of you, our extra money goes towards combatting you instead of towards fun things like vacations. Because of you, my big girls have told me they never get enough time with me, and it makes them feel cheated. Worst of all, because of you, I know I will attend my baby girl’s funeral — something no parent should have to endure.

To say these things make me angry or sad wouldn’t fully span the scope of my feelings. Some days your arrival feels like a tragedy I will never get over. Some days I hate you so much that I just want to scream and hit something.

But then there’s this… image

Because of you, I will never hear my baby say she hates me, like every little girl/teen says at some point. Because of you, Bella wants me to rock her every night and snuggle with her every day, even though she’s 5. Because of you, I’ve experienced unbelievable joy over such small but beautiful things: Bella grabbing my hand or hearing her most spectacular Ernie-like giggle. Because of you, I’ve found strength I never knew I had. Because of you I’ve felt the most intense gratefulness for every day she’s healthy and happy. Because of you, in a quiet moment my 11-year-old told me she thought I was so brave — the biggest compliment I’ve ever received.

And then I think about my husband, who’s used his mechanical know-how to create the most amazing things to help ease the burden of having you around. Because of you, I’ve seen a tender side of my husband that makes me love him even more. Because of you, our family sings and dances just to see Bella smile. Because of you, my older girls will walk up to someone in a wheelchair and introduce themselves. Because of you, I’ve seen a nurturing, selflessness in my 9-year-old that’s rare in one so young. Because of you, my big girls are so devoted to their little sister; they both aspire to be therapists when they grow up (and if they do, they will be amazing). Because of you, our family has adapted to what our life is, fought to find ways to make every day special and grown closer.

I imagine we will never know why you decided to show up or even whether you’ve been a blessing or a curse. I do know that because of you, we all rally behind Bella every single day. Because of you, we love stronger, we hold tighter. Because of you, we cherish every moment. If you’d not become our uninvited guest, we may be a different family. But maybe, just maybe, this family is exactly what we were meant to be.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Dear Spinal Muscular Atrophy,

Oh, what a tangled web you weave. I grew up hating you because that was what was expected of me, but truthfully, you’ve also provided a lot of good to my life. How can I find a balance between dealing with the issues you present and being proud of who I am as person with a disability?

Yes, SMA is progressive. Yes, my muscles have gotten much weaker in the 34 years we’ve lived together. SMA can and does kill babies, but thanks to medical advancements, we are seeing many living longer lives. And that is the operative word: “living.

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It seems to me, SMA, that the bigger issue is how others treat us because of you. The biggest barrier is the lack of accessibility of much needed services: equipment needs, access to healthcare and access to care. With those things, many of us living with SMA have the ability to achieve whatever goals we set for ourselves. I see advancements in equipment as forms of technology that put me on a level playing field. As it should be!

Attitudes others have toward you, SMA, are quite stifling. Yes, I believe we need treatment options to eradicate the negative effects on our bodies, like respiratory issues, muscle weakness and for some of us, constant pain due to lack of movement. However, must we talk about you like you’ve made us less than, suffering or broken? Must we speak about “fixing you” as if some part of us is missing because of you, SMA? Those sentiments lead society to figure those of us with you are broken and less than able-bodied people, making it even harder for us to get those much needed services.

Many of us have found success. We are mothers, fathers, sisters, brothers, teachers, lawyers, filmmakers, doctors, aunts, uncles, cousins, students, actors, technology gurus, athletes, artists, writers and more. We come from all walks of life — all genders, sexualities, races, religions, cultures and nationalities. SMA doesn’t have to have us. It doesn’t have many of us.

You’ve made me more compassionate. You’ve made me more understanding. You’ve made me a better person, SMA, and for that, I thank you. I’m proud to be a person with a disability. I’m proud to show the world that people with disabilities are just as equal, just as capable and just as worthwhile as anyone else. Sure, you frustrate me some days, SMA, but I don’t think I’d be as good a person if you weren’t in my life.

Having you in my life has certainly helped to shape my worldview. It’s made me the strong disability advocate I am today, and I wouldn’t change anything about having you in my life. So, thank you, SMA. Without you, I would probably be ordinary. Because of you I am so much more.

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


What’s one thing you wish people knew about Down syndrome?

We asked our Mighty community this question, and they came through with powerful insights. Watch their awesome responses in the video above or read their answers below. You may learn a thing or two — we sure did.

Katie Driscoll and Grace Driscoll:

We want people to know that individuals living with Down syndrome have the same hopes, dreams and aspirations for independence and employment that everyone else has.

Jamie Brewer, actress:

We can do everything you can do. We are active, social and creative. Just like you.

The Stafford family:

My sister rocks her extra chromosome.

Jillian Benfield:

Down syndrome has a way of changing both people and families for the better.

David DeSanctis, star of the upcoming film “Where Hope Grows

If I can remember 130 lines for my part in the movie, then can’t you see my abilities, not my disabilities?

Sharon Randall:

Down syndrome does not define my son. He loves basketball, he’s good at math and spelling, and he plays too much Xbox. He also happens to have Down syndrome.

Anne Grunsted with wife, Valerie, and son, Bobby:

People with Down syndrome have their own unique personalities just like everyone else. Our son is silly, sweet and a huge ham for the camera.

Carole Janine Guess, National Down Syndrome Congress Board:

Down syndrome will not determine what my child will be when he grows up. He will.

Mardra and Marcus Sikora:

Madra: Down syndrome is one thing. Marcus is everything.

Marcus [singing]: I want to thank you for letting me be myself…again. – from Sly & the Family Stone’s “Thank You (Falettinme Be Mice Elf Agin)”

Sara Weir, President of the National Down Syndrome Society:

In 2015, people with Down syndrome are going to college, working, getting married and living independently. But as a national advocate for people with Down syndrome, we have so much more to accomplish.

The Parman Family:

[My daughter] is awesome. There is nothing we would change about her, and there is no way our family could be complete without her.

Thank you to our contributors, and Dalton for the music!


Dear Down syndrome,

I was so smart before I gave birth to you. I knew almost all there was to know about everything.

I knew books were pure knowledge and that a doctor’s knowledge knew no bounds.

I knew the Internet was a great place to find important, pertinent information.

I knew stereotypes were overblown and didn’t have to be harmful.

I knew the school systems in place were tried and true and that educators knew better than I do.

I also knew support groups were for the weak and more important, that I would never need one.

I knew there couldn’t be injustices in the world and that everyone was pretty much treated equally.

And I knew one’s own community should lead the charge without much room for trailblazers.

Since I gave birth to my son seven years ago, I’ve learned so much about you. I also know I still have a lot to learn.

I’ve learned that books aren’t always spot on — they might even be outdated.

I’ve learned that stereotypes are rarely criticized and yet always harmful.

I’ve learned that people who wear long white coats, carry clipboards and drive fancy cars aren’t always right or even sensitive.

I’ve learned that the Internet can be a struggle to navigate and a painful path to ignorance.

Because of you, I’m getting an inkling that the school systems and staff have some changing to do.

I’ve learned that support groups can be necessary to survive, and that I specifically couldn’t exist without one.

I’ve especially learned that there are many injustices in the world and that not everyone is treated equally.

And I’ve learned that in our own community, there is plenty of room for trailblazers, just like the one my son has proven to become.

So, Down syndrome, I want to thank you for teaching me and the world around us every day.

Who knew that in seven short years I could learn things it takes others a lifetime to learn.

Love,

Shawna Lochner

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.


cp4 As a young mother and bride still in my tender teens, cerebral palsy came into our lives loud, demanding and uninvited. I didn’t have a clue as to what was happening, what would happen or what to do. Cerebral palsy became one of my best teachers.

I was such a shy young woman who loved her first born child with everything she had, so cerebral palsy was a guide I used to help me find my voice, my strength, my creativity, my purpose and my own sense of self-acceptance. The countless stories I could share would have us all laughing, crying and experiencing every range of emotion we have within us, but the truth of the matter is, every challenge taught me something and most important, it taught me about the power of love.

I never thought about thanking cerebral palsy in this way because it’s hard to imagine CP from a perspective of gratitude. I’m not sure what my life experiences would have been like if my son did not have cerebral palsy. I can’t imagine where I would be or what I would be doing, but I’m thankful for my life, and I’m thankful for all that cerebral palsy has helped me realize. We’re all human. We all have challenges. We all desire acceptance, love, respect and the opportunity to pursue our dreams no matter our color, race, gender, ability or disability.

Diversity is the fabric of this world. And cerebral palsy is just another cloth that adds to the many layers, so thank you, cerebral palsy. You’ve been an awesome teacher.

My son, Ajani “AJ” Murray, is 32 and an actor, public speaker and an advocate for justice. Check him out in a documentary featuring him:

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For my husband and I to get away on a little vacation, we had to arrange care for our 28-year-old son. Born with a diaphragmatic hernia discovered after a complicated birth, he experienced brain damage, leaving him with cerebral palsy. He’s our fourth son and our sixth and last child. His older siblings ranged in ages from 2 to 9 when he was born the beginning of the Christmas season, 1985. This new baby was just another brother in their eyes. My daughters still babied him and dressed him up in funny costumes. My sons wrestled and teased him, as he rightly deserved being the baby of the family. He was included in all family outings. We’ve had caregivers who have assisted us over the past 28 years — mostly people we knew from our church and my parents. We had a few young men who gladly took him to a basketball game or came off the bus with him from school and treated him like one of the gang. We had women I met who loved him as much as we did and wanted a little of his heaven to rub off in their arms. Mostly though, while growing up, his brothers and sisters took care of him if my husband and I wanted a date night.

When we moved from the town he grew up in, we said goodbye to his peers and our friends. His buddies and our children graduated and went on to live their compassed lives. We found ourselves in a new city. He’d aged out of the school system, and we were all set to begin a new season of our life. We found caregivers hard to come by, and they didn’t stick around long even when they were great. It’s tougher for me to get away now, and his care is more difficult only because he’s matured into a young man, and we’ve matured into old people! Some have asked me about our plans for his care in the future. When I quickly and assuredly respond that his siblings will care for him, some have queried, “Is that really fair?” “Do you really think that should be their responsibility?” The questions are delivered in a learned tone, in a redundant fashion; mostly it’s a statement, not a true question. Trying to explain to others what his presence has added to our existence is impossible.

author's two sons smiling

By a stroke of luck, most of our children ended up living near us, and we’re blessed once again with their presence but even more by their babies. When we left this weekend, we dropped him off at our daughter’s home. Her 2-year-old rushed to the door, “Hi, TJ!” she said with as much excitement as if he were Santa. She asks where he is if she doesn’t see him for a few days. She wants gauze taped to her stomach like he has, and the other grandkids fight over who gets to push his chair and feed him. His loud startling laugh doesn’t bother them, and when it upsets another child at a store, they can’t figure out what the big deal is.

four of the author's children when they were little

My daughter, with her four children, gladly welcomed him to their home to continue the lesson on loving one another, serving one another, helping those who can’t help themselves and not fearing others who look different, sound different, and yes, slobber. My son and his wife stepped in to help on one of the days. Their 17-month-old loves to climb on his chair and grab his bent and spastic hands. She loves his soft hair and wants to kiss him.

Is it fair? No, it’s not fair that others can’t have a built in angel like we do. Is it their responsibility? Yes, I think it is; just as we taught them to help the guy with the flat tire along the side of the road and the new family who just pulled up with a U-Haul that needs unloading and the widow who needs her lawn mowed and her gutters cleaned out. I’m blessed with a spouse and six souls, given to me for a short time to learn lessons here on earth such as how to love unconditionally, how to love others more than myself, and how to serve others to feel the love that we believe Christ has for all of us.

sister with her brother with a disability

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