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To the Cruel Disease That Tried to Break Me: You Failed

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Dear Dysferlinopathy,

I bet you thought you could break me.

You came into my life after I graduated from college, an unwelcome visitor when I was just beginning to experience all the world had to offer. You took the dreams I had for my life and threw them to the ground. Spit on them. Buried them in the same dirt I would fall facedown on years later.

You attacked my muscles slowly at first, just subtly enough for me to shrug it off as laziness and fatigue. I would work out hard, but you kept coming back harder. Eventually I would learn that the more I tried to preserve my muscle mass, the more you would destroy my muscle cells. You’re a cruel disease. You killed my cells when I was active. You killed my cells when I was inactive.

Three years ago, you almost broke my spirit. Falling face-first onto the sidewalk for the first time – you almost had me. The gravel, the blood on my hands, the torn jeans — those were minor inconveniences compared to the emotional toll it took on me. I’ve never felt so down in my life.

In your perverted world you took pleasure in my misfortune. You kept knocking me down over and over and over again, always making me fall right when I built my confidence back up to go outside and attempt to live a full life.

You turned the city I live in and the city I love – Boston – into a prison. I can’t go for walks anymore. I can’t go to many places in this historic city because they have staircases. For the longest time you turned me into a hermit, building up my immunity to cabin fever. I can no longer be spontaneous, as you require that I plan out how to get from Point A to Point B in excruciating detail. Some days you are miserable to deal with.

But in your ignorance and pride, you made a fatal mistake. You picked the wrong person. 

You have unlocked a determination in me I never knew existed. You thought my frustration, my sadness, my depression would cause me to withdraw from society and take away all the joy in my life.

You failed.

Instead, you’ve taught me the importance of relationships with friends and family. You have connected me to muscle disease researchers determined to reverse the effects you have had on my life. You may have forced me to see the world through a different lens, but that lens shows me the open doors, not the ones you have closed.

It turns out you are the weak one. I mean, you don’t even have an official name – I have to call the disease different names to different people depending on the audience because you are so hard to diagnose. Miyoshi Myopathy. Limb-Girdle Muscular Dystrophy. Distal Muscular Dystrophy. Whatever you are called, your reign is coming to an end.

You’ve given me a purpose in my life I never would have known. And that purpose is to make sure that you and all your muscle disease friends are defeated once and for all. Someday you will be the one that falls. Someday, when someone receives your diagnosis, you will be nothing more than a footnote in a medical record, treated and forgotten about.

Dear Dysferlinopathy,

You thought you could break me. But you failed. You will never touch my soul, the part of me that is unbreakable. 

I never would have known that without you coming into my life.

For that, I thank you.

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] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When I Wrote to A.C. Moore About Featuring People With Down Syndrome in Ads

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I’m what you call a bit of an advocate. I have a son with Down syndrome, and I spend a lot of my time raising awareness, raising funds and trying to make a difference for people with Down syndrome.

On my own, I write to companies that have inclusive advertising practices. I thank them for including people with Down syndrome (or other disabilities) in their ads. And for companies that don’t have inclusive advertising, I write to them and ask them to start inclusive advertising practices.

Then I became aware of Changing the Face of Beauty. This organization is trying to do exactly what I was trying to do. So I started posting on social media, using the hashtags #changingthefaceofbeauty, #imready, and #15in2015 (now #100in2015). The goal was originally to have 15 advertisers commit to including people of different abilities in their advertising campaigns, but it’s been so successful that they’re going for 100.

Earlier this week, I wrote an email to the “Contact Us” page on A.C. Moore’s website. Their ad and their website featured a beautiful little girl with Down syndrome because of a fundraiser they were supporting. When I wrote, I hoped the email didn’t go to a black hole.

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I said the ad brought tears to my eyes. I said that I have a 4-year-old son with Down syndrome and mentioned that it’s rare to see a television show, advertisement or any type of media that featured a child that looked like him. I told them all about Changing the Face of Beauty and the campaign for inclusive advertising. I also loved that the ad was in such close proximity to World Down Syndrome Day. I asked A.C. Moore to consider including children with Down syndrome in their advertising… but not just for a fundraiser.

I wasn’t sure the email would go anywhere, but…

Just a couple of hours later, I saw there was an email from an unfamiliar name: Mike Lyons, the VP of Marketing for A. C. Moore. Holy heck!

He said he’d thought about my email, and he couldn’t think of a place in the media where kids like my son were featured either. He didn’t know about World Down Syndrome Day, and he hadn’t heard of the Changing the Face of Beauty organization or their campaign.

He wanted a change. He wanted to have his company be one of the 100 companies. He wanted inclusive advertising, and he wanted to figure out how, on a moment’s notice, to celebrate World Down Syndrome Day at A.C. Moore.

He continued the conversation with me and with Katie Driscoll, founder of Changing the Face of Beauty. He wanted to put something in their daily email recognizing World Down Syndrome Day and Changing the Face of Beauty. Most companies move like molasses and make apologies when timing doesn’t work out. Mike and A.C. Moore were moving at lightning speed, embracing our request and celebrating those with Down syndrome who were also their customers. To all companies out there, when responding to your customers’ requests about inclusive advertising (or anything else, for that matter), this is what GREAT looks like!

ac moore world down syndrome day ad  Sometimes, when we send emails to the “Contact Us” section of a website, it goes nowhere. But sometimes, you find a Mike Lyons and a company like A.C. Moore, and it brings about a big change in the form of an ad celebrating World Down Syndrome Day and announcing a company’s commitment to Changing the Face of Beauty.

Keep writing, everyone. More and more companies are starting to figure out that those touched by special needs are their customers, and their customers of all abilities want to be recognized and heard. As more and more companies participate in inclusive advertising, we’re going to approach the holy grail… a time when inclusive advertising is the norm.

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How a Little Voice in My Head Helped Us Cope With the Diagnosis

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Dear Down Syndrome,

michelle brown the mighty When I first began to think about what I wanted to say to you, I searched my heart for anger or resentment. Surprisingly, I found none. I was so certain that I must hold some negative feelings that I attempted to force the words. None came. I realized that my feelings toward you were neutral.

While I acknowledged your presence and your impact, my heart can’t hold any anger. It is too full of love.

My baby boy, Sebastian, was born 21 months ago with Down syndrome. We didn’t know prior to his birth. We elected not to undergo any genetic testing because we knew we would not choose to do anything other than welcome and raise our child.

michelle brown sebastian the mighty I knew little about you but was flooded with negative images of delays, health issues and burdened parents. When we found out our beautiful, precious little boy had Trisomy 21, I cried. I grieved. I worried. I prayed to God, and I was consumed with fear.

A small voice kept telling me it was going to be OK and that Sebastian was a gift. I held onto that voice and the feeling of strength it gave me. The voice grew and became stronger than my doubts and fears.

As I held my little baby boy, cared for him and looked into his eyes, I knew the reassuring voice was right.

Sebastian is a gift. He has a special magic about him. His smile and his steady, wise gaze confirm this for me daily. I know I’m his mother and I’m biased as all mothers are and should be, but this little guy is something special. When he looks at you and smiles, you feels as if two souls are meeting. He engages the highest, best part of people and elicits such amazing love.

I can’t help but think that you, Down syndrome, played a role in this. Sebastian got an extra dose of the beauty of humanity along with that extra chromosome. For that, I’m so thankful and feel so blessed.

We created one amazing little boy, Down syndrome. Thank you.

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] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Little Girl at the Pool Realized My Son Has Autism

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EMTs, firefighters and police officers all have something in common. When crisis arrives and everyone’s running away from it, they’re the ones running towards it. They’re the first on the scene to help, to rescue and to serve. In my world, the term “first responders” means something a little different.

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The first year after my son’s autism diagnosis — now five years ago — was by far the hardest. The news hit us like a mack truck. We were lost, confused and in many ways, in a state of grieving the “what could’ve been.” But probably more than anything, I felt alone. I’ll never forget our first responder, “Dana.” She was the first one to reach out. She has a son with autism, and she told us the first year would be the roughest… but she also told us things would get better. She said we’d find our therapists (we did). She said we’d find a school (we did). She said we’d find our “village”(we did). She said we’d find our way (we did). She was the first of our “first responders.” I’d later meet all the aforementioned amazing people who would also become first responders. The ones who reached out. The ones who came to help. The ones who came to “rescue.” The ones who’d devoted their lives to serve kiddos and families like ours. “Dana.” She was the first of my first responders. That’s something you never forget. That’s something I hope one day to pay forward to someone else in need. I hope one day I can be someone’s first responder.

Spring has sprung, and the weather is getting warm again. I can’t help but think about summer. I can’t help but think about the little girl named “Jade.” Last summer we were living in an apartment with a community pool. We would venture out early to avoid the extreme heat, the crowds and to be honest, yes, to avoid the stares. One time a gentleman (term used loosely here), after looking at my son, motioned to his wife that circular motion between his ear and head. You know, the one people use to indicate someone’s “crazy.” Yeah, that happened. People aren’t always kind. That day, as we walked back towards the apartment, I contemplated all the things I could’ve and should’ve said. And I may have possibly considered running him over with my Prius. OK, maybe not run over but at least tap him with my front bumper (That’ll teach him!) But instead of doing any of that, I went home and I cried, and then I cried some more. I avoided the pool after that as much as I could. My son stims… and he stims a lot. Finger-flicking, hand-flapping and squealing. Behavior that makes him appear “weird” to some people. Kids never initiate play with him, and typically when one has, as soon as they realize he’s different, they walk away. They always walk away.

Except this one time…

son happily playing in the pool I was sitting by the pool watching my son splashing and squealing, doing his stimmy thing, happy as a clam.  In walks “Jade,” somewhere between 7-8 years old, blond hair, freckles across her nose, all 50 pounds of her, if that. She spots him by himself and proceeds to initiate play. She talks, asks him questions and as usual, he doesn’t respond. About this time, I fully expect her to walk away, just like all the others had before her, but she doesn’t. She doesn’t walk away. Instead, she looks at me and asks, “Does he talk?” I respond, “No, he does not.” She asks, “Does he have autism?” I’m not going to lie here, the question stunned me a little. I wasn’t entirely sure how to explain autism to a girl so young. Either way, my response was short and simple, “Yes, he does.”  She turns around and changes her approach with him. Instead of asking him questions, she starts telling him what to do. “Here, get on the float, I’ll pull you,” “I’ll throw the ball, and you catch, OK?” Whoa! Was I really seeing what I was seeing? Was my son playing? Did my son finally have a friend? For about 20 minutes, until the little girl had to go, I got to watch two kids laughing and playing together, and for the first time ever, one of them was mine. Thank God I had sunglasses on because I was a mess. A blubbery, emotional mess at what I’d just witnessed.  

Had I not ventured back to the pool because I was too scared to have another encounter like the one with the “gentleman,” I would’ve missed out on two of the remarkable things. The first one was this: in about 20 minutes, the little girl named Jade gave me something I’d waited six years to see. My son, mine, play with a friend! And the second thing I witnessed, well that was as equally remarkable: That warm summer day, I got to see a first responder being born. And that, my friends, is something you never forget. 

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6 Tips to Consider When Planning to Adopt a Child With Down Syndrome

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I was recently asked to share my experience with adopting children with Down syndrome. My hope is that with this post, I can share my heart as well as give some practical insight into what this journey has been like for our family and me.

Adopting a child with Down syndrome was not something I’d dreamed of all my life or had even been contemplating when we began our adoption journey. It came at me out of the blue one day as I was celebrating with my brother-in-law and sister-in-law, Derek and Renee Loux, as they committed to adopting three precious children from eastern Europe. I was on the phone with Renee, and she was talking me through an adoption website to show me the photos of the three boys they were planning to adopt. At the last moment, she said, “Oh Trace, scroll down to the bottom and look at the photo of the little blonde boy with Down syndrome. I would bring him home too, but Derek said, ‘Only three, Renee!’”

I scrolled down to the bottom of the page, and my eyes landed on the photo of the most beautiful little boy in the world. I fell in love. From that day on, I would always believe in love at first sight. In the deepest part of my heart, I knew this was my son. I would move mountains to bring him into my home and call him my own. Within seconds, I was on the phone with my husband, who came home to check on his crazy wife. My children were in the background, asking, “When can we go meet him, Mom?”

I didn’t plan this. I believe God did. I believe He knew from before time began that this little blonde-haired, hazel-eyed boy would be my son.

Aiden was 3 years old when we adopted him. Our first year home with him was filled with so many doctor’s appointments that I eventually lost count of them. We visited every specialized department under the sun: cardiology, infectious disease, our regular pediatrician, the Down syndrome clinic, ophthalmology, dental clinic, endocrinology… the list goes on. We had him evaluated through the school district for educational services, physical therapy, occupational therapy and speech therapy.

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At this point, here’s what I expected:

I expected to love this child.

I expected him to have developmental delays and possible medical issues.

I expected him to have fear and anger because of a painful past.

What I did not expect:

I did not expect to be admitted to the hospital within months for a lung biopsy because of a positive tuberculosis test or that he would eat an orange crayon in the dental clinic waiting room, making his exam impossible.

I did not expect to clean up the most horrible poopy messes on the planet from his hands, the walls and his crib rails.

I did not expect that one child could bring so much joy and delight to our family.

Two years later, we felt prompted to renew our home study again. This time, we would pursue a domestic adoption of a child with Down syndrome.

391985_10150414477863595_530028594_8485965_2130662424_n We were matched with a birth mom carrying a little boy with Down syndrome. Because of late prenatal care and diagnosis, there was a chance he would have a heart defect, but we were prepared to walk through that if needed. We prepared to welcome Mattie into our home the best way we knew how.

I expected to love this child, and I knew we would give him everything he needed to have the best life possible. I was grateful that we lived near such an amazing medical facility and that we had a wonderful Down syndrome community in our area. I felt ready.

I did not expect to spend the first 11 months of my son’s life in the hospital watching him face life-threatening illnesses, four surgeries (two open heart surgeries, a feeding tube placement and a tracheostomy). Some of my posts on this journey: “Fix It,” “Love and Machine,” and “Love Heals.”

I did not expect to take my child home on a ventilator needing the support of skilled nursing to care for him at home.

I did not expect that one child could change my life, show me how weak and how strong I really am and bring more joy and love than I could have ever imagined.

Practical tips and things to consider when planning to adopt a child with Down syndrome:

1. Be prepared. If you’re considering the adoption of a baby still in the womb, you will need to be prepared for anything because there are a lot of unknowns. Heart defects are common in children with Down syndrome and can often require surgical correction. Children with Down syndrome can also face a number of other medical issues including thyroid issues, feeding issues and vision issues.

2. Educate yourselves. Read and get connected. The National Association for Down Syndrome and The National Association for Child Development are great resources.

Look into your local Down Syndrome Guild — here’s a link to ours in Kansas City. Read books like the ones on this list. I’m currently reading “Down Syndrome Parenting 101.” So far, so good!

3. Insurance. Find out what coverage your insurance has, but also keep in mind that your child may qualify for Medicaid because of the Down syndrome diagnosis. A child with Down syndrome who is adopted domestically may also qualify for an adoption subsidy to help offset other costs related to their care.

4. Preparing for the future. A child with Down syndrome can achieve a great deal of independence, but it goes without saying that he or she will need extra support even into the adult years. This is another great reason to meet and talk with parents of older children and adults with Down syndrome. Think about who will care for your child if you and your spouse should pass away, possibly a family member, an older sibling or a close family friend. Here is a site with great advice on guardianship and another about estate planning.

5. Educating your child. You will need to look at all of the resources available to educate your child. Early Intervention programs can provide in-home training and speech, physical and occupational therapy. Once a child reaches age 3, those services are available through the local public school system. We were blessed that our children with special needs were able to attend an amazing public preschool where they received all of their special services. Your child will have an Individual Education Plan through the local school district.

If you choose not to utilize public school and opt for private school or home schooling, your child should still be able to be evaluated and receive special services through the school district, even if he or she is not attending full time.

6. Family and siblings. Our children with Down syndrome have been fully accepted into our family. Our children who were already in our home have been amazing. They have learned so much and have become stronger, better people because of the impact their siblings with special needs have had on their lives. We have been blessed with an incredibly supportive extended family, but there are times when you may have to educate and prepare your family for welcoming a child with Down syndrome.

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If this little bit of personal information has been helpful and you are interested in learning more about adopting a child with Down syndrome or any other special needs, please email me about our Special Needs Adoption Program, tracie@christianadoptionconsultants.com 

This post originally appeared on From the Heart.

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When March 21st Wasn’t a Happy Date for Me

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Everyone has at least one day in their lives that they could call “life-changing.” When applied to my life, there are a few moments that come to mind: high school graduation, my engagement and subsequent wedding, the night we found out we were expecting our first child, her birth, the day I found out we were expecting again. I can tell you the month, date and year all of those things occurred; they’re important moments, monumental moments, moments that changed the course of my and then my husband’s life. One thing they all have in common is the joy that came with them and the tears shed by me or others looking on with love and pride.

But there’s another moment, one that will be with me until the end of my days. It’s a moment I’m not proud of, a moment full of anger and hate and tears. Three years ago today, I was blissfully unaware that I was about to add another life-changing moment to my list. I had no idea that less than 24 hours from now, I would be given news that would expose my truest of feelings and leave me shaken, ashamed and confused.

When I think about it, I don’t really remember much about March 20, 2012; it wasn’t anymore special to me than any other day. I couldn’t tell you what I had for breakfast, lunch or dinner. I couldn’t tell you what I wore, if I was at work or home, if I did anything special with my spouse or daughter. I’m sure I was happy or as happy as a pregnant lady chasing a toddler could be. We had some scary news earlier in the pregnancy that had seemed to resolve itself, and although I knew the results for our amniocentesis would be in soon, I wasn’t too concerned.

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And then the next day came. I remember going to work and having a fairly pleasant day in triage. I chatted with friends; few knew we had an amnio, so it wasn’t on the forefront of my mind. As I was leaving I checked my voicemail, there was a message from our perinatologist to call him back; our results were in. So I did just that. I called him back, and then March 21st was added to my list of life-changing days. It wasn’t a happy occasion; the tears shed were not ones of pride, joy or love.

I can sometimes still feel the fear and confusion I felt after hearing the doctor utter two little words “Down syndrome.” I can still feel the tears that rushed down, soaking my steering wheel and t-shirt. I can still picture the confused look on the old man’s face, who tapped on my window to check on me. I can still hear the three words I shouted in anger at God as I pulled out of the parking lot: “I hate you.” And I can still hear the thoughts echoing in my head about my unborn son: “I don’t want you.”

As I said, it wasn’t a moment I remember proudly. My initial reactions left me feeling guilty and angry at myself.  I went home that night, kissed my sleeping daughter and changed into my pajamas. My in-laws came over to discuss our results. I ate cold Ramen noodles. I’d told my mother-in-law, “I like them cold,” when she urged me to eat them. I didn’t want to tell her I had no desire to eat anything. I cried some more and then went to sleep. And then it wasn’t the 21st anymore.

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Over the following weeks and months I learned as much as I could about life with a child with Down syndrome. I prayed. A lot.I forgave myself. My love for Gabe grew bigger and bigger, just like my belly, until it felt like my tummy and heart couldn’t expand any further. Then Gabe came and slipped seamlessly into our lives. Mommy, Daddy, daughter and son — our perfect family. I like to think of the days before Gabe as the days “Before Down Syndrome.”

Those were the days before words like “chromosomes,” “trisomy,” “low tone,” “therapy,” “advocacy” or “acceptance” were part of my everyday vocabulary. The days before I understood what it meant to use people-first language. They were the days before I felt like I understood the meaning of true and unconditional love. The days before I had friends, best friends that spanned the globe, before I had the confidence to stand up for my children’s needs and before I knew what it meant to take a timeline, throw it out the window and be OK with it. Those were the days before I fell in love with a blue-eyed boy, before I knew how wonderful, amazing, challenging and perfect it was to have a child with Down syndrome.

I wouldn’t give them up for anything, and even though sometimes I miss the simplicity of them, I wouldn’t give up a single day that has came After Down Syndrome either.

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This post originally appeared on Hand Me Downs.

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