Upon hearing the story of what happened to me at age 28 (getting sick; the beginnings of physical disability), most people look at me with pity in their eyes and sympathy stitched on their faces, and tell me how sorry they are. I understand this is a response born of compassion and of a desire to comfort. But it also stems from the inability to relate, ignorance of how this part of my life experience has played out and affected me, and misunderstanding of my feelings concerning my illness and disability.
You see, I am not sorry about becoming ill and disabled. And if I’m not sorry, why should you be? It’s true my life changed completely back in 2009 – all the dreams, goals and plans I’d had for myself fell out of reach; all the hard work I’d put into earning my Master’s degree and being a Special Education teacher became meaningless; life as I’d known it for 28 years disintegrated. At first, I admit to being full of self-pity. I felt wronged by life, a victim of cruel circumstances. I felt depressed, angry and hopeless.
One evening, I was crying out through sobs and tears, “Why me?” over and over. All of a sudden, a new and seemingly alien thought occurred to me – why not me? I was perfect for this situation! I knew how to modify my environment, sometimes with ordinary household items; I knew the services and organizations that were at the disposal of the local disability community; and the whole time I thought I’d been teaching, I’d been the student. The children I worked with had shown me how to be determined, motivated and enjoy the life I was given. I could choose to wallow in grief and pity or I could embrace the new circumstances of my body and do my best with what I still had.
Since then, I’ve gone through many stages physically, mentally, emotionally and spiritually. I’ve learned a lot about myself, about how strong I am, what I’m able to handle. I’ve learned new coping skills. I’ve learned to accept my illness and prognosis and have arrived at a peaceful place with it. I’ve learned how to use my voice to advocate for myself, and now for other parents with disabilities. I’ve learned how to educate and be effective in my community. I’ve learned that my abilities and strengths far outweigh my limitations and weaknesses.
I’ve also been brought so much closer to God. I didn’t even believe in Him back when I was diagnosed, but can look back at that night and get chills because I now believe He loved me enough to be in the ER with me that night, regardless of how little I thought of or felt about Him. The director of the ER had written his doctoral dissertation on my extremely rare neurological disease and was able to diagnose me, which not only brought back some of my eyesight and saved my life, but ended the three-month-long search for what was going so wrong with my body.
My faith is strong these days and carries me through the difficult times, the scary times and even the times when doubt may creep in just enough to cause worry lines to form on my face. I believe He’s watching over me and loves me very much. He doesn’t see my failing body, my medical equipment or the awkward way I sometimes wander through the days – He sees my heart. To Him, I’m perfect. And, most days, I’m able to see myself through His eyes.
Because of getting sick and losing so many abilities of my body, I’ve been able to find gratitude, which I honestly didn’t have much of before becoming disabled. I’d spent 28 years taking every moment and each movement for granted. Now I savor each day and rejoice in what my body is still capable of doing. This has been yet another gift from what so many people seem to view as “a tragedy” in my life.
Please don’t feel sorry for me. For 28 years, I lived in a healthy, able body but had a broken, damaged and deteriorating spirit. My outlook on life was negative and my self-esteem near non-existent. Since my diagnosis, the situation has reversed itself. Now, my body doesn’t work so well, but my heart and soul are overflowing with joy, peace, contentment, self-confidence and a zest for life. I’m grateful for each day and enjoy every moment. How could I be sorry about that?
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My mother is a hardworking women. She is not perfect, as she often expresses, but to me she gets pretty damn close. I know that no matter what I do, she will always help me to the absolute best of her abilities. More than anything, she is always there for me when I need her. She was my nurse 24 hours a day, seven days a week through all the months that I spent in the hospital. Not once did she leave my bedside. Never once did I ever hear her complain.
All my life, my mother has been my greatest ally. My father took the cautious approach to raising a child with a disability. I do not blame him for this; fear can affect the best of us and it was simply his method of making sure I wouldn’t get hurt. Every time I expressed interest in a new hobby, my father was quick to shut it down, saying whatever I wanted to do was just too risky considering my impairments. How could I swim with only one functional arm? How would I go away to summer camp and pee in the woods with only one leg?
I was always adamant about what I wanted and I am extremely lucky that my mother and I shared the same spirit and enthusiasm for life. She would advocate to my father on my behalf. I participated in so many activities and gained wonderful experiences thanks to her belief in me. I went on to be a camp counselor and swim competitively at the national level. I know that without my mother, these dreams would never have materialized.
One memory that stands out vividly is when during a particularly hard time in my life, struggling with a lot of physical and emotional pain, I decided to self-medicate. She never once judged me or chastised me for my actions, but instead came to me with the most immense compassion and strength, telling me over and over again how much she loved me, no matter what I thought of myself.
My mother’s life has not been easy. She has seen her fair share of sorrows and setbacks, but I have never seen anyone else handle their struggles with such grace.
Congressional Republicans, spearheaded by Speaker Paul Ryan and Vice President Mike Pence, are under deep pressure to pass legislation which would repeal and replace the Affordable Care Act — the groundbreaking health care legislation passed in 2010 under President Barack Obama. Under the AHCA, Medicaid funding would be drastically cut – with such severe restructuring that it would be the end of the program as we know it. The legislation also eliminates protections for people with pre-existing conditions to have guaranteed access to healthcare.
As someone with a disability, this legislation has a deeper impact than most other pieces of legislation do on my day-to-day life. Health care is critical for anyone with a disability, because our disabilities are so inherently impacted by our health. My body is impaired and constantly working to keep up with the rest of the world despite facing significant barriers. Health care provides me with pain relief, physical therapy, and answers. Medical professionals help me understand my body in ways WebMD cannot and should not. They provide me with the answers that ensure I can take care of my body, and help me learn to love and cope with the negative implications of my cerebral palsy.
Health care is a bridge for people with disabilities. It bridges my disabled body to resources and support that allows me to be the strongest I can be. Health care anchors me in a deeper understanding of my own body, my limitations, my weaknesses and my strengths. And perhaps most importantly, health care gives me compassion and support.
When the government prevents people with disabilities from accessing health care, they are ultimately barring us from the very services that help us exist and thrive with our disabilities. We already exist in a world with structural and physical barriers that make it harder to live with a disability, such as unfair stereotypes, stairs, buildings without ramps etc. Denying us health care creates an even more terrifying personal barrier — a barrier that prevents us from accessing our own bodies and our own health.
According to the Center for American Progress, more than half of children with disabilities rely on public insurance coverage, such as Medicaid, for medical services and supports. Medicaid is a critical program that allows millions of people with disabilities to access necessary health care.
As someone with a disability, I have a lot to lose when our government decides they can mandate whether or not I have access to health care. As someone with a disability, health care is not a mere checkup, but the difference between whether or not I can live without pain. It is the difference of whether I merely survive, or thrive. It is symbolic of whether my country wants to help me utilize my strengths, or will allow me to be barred by the untreated limitations of my disability. For many people with disabilities, access to health care is simply life or death.
Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
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The show stars Micah Fowler as JJ DiMeo, a teenager with cerebral palsy who uses a letter board to communicate. Like his character, Fowler also has cerebral palsy. John Ross Bowie, Kyla Kenedy, Mason Cook and Cedric Yarbrough also star.
“I hope as people watch ‘Speechless,’ they get to know JJ as a very normal person, to the point that the don’t even see the disability. I specifically hope to bring a huge amount of public awareness to cerebral palsy,” Fowler previously told The Mighty. “[M]ost importantly, my hope is that the show will make people less uncomfortable around people with disabilities and more encouraged to interact with them, to look beyond the physical or other limitation and see the real person, the heart, the personality, the love and yes, even the humor.”
You can catch the season finale of “Speechless” on Wednesday, May 17. An air date for the second season has yet to be announced.
One of the high points in parenting is getting to read books to and with your child. It is a bedtime ritual that has been practiced for decades upon decades. Whether it was “The Adventures of Dick and Jane,” or the now ever-popular “Harry Potter” series, books at bedtime are a staple in a household with children.
However, when I went looking for a bedtime book I felt my child could relate to, I came up short. Actually, I came up empty. I searched local independent bookstores, well-known chain bookstores like Barnes & Noble, and even online looking for a book that had an African-American girl in a wheelchair on the cover. I quickly discovered there was nothing. It simply did not exist.
Let me put this in a broader context: My child did not exist in the books written and designed for a group she is clearly a part of: children.
While I did find books that talked about children having a disability, the books often focused on the child’s disability, and never the child. This would never do for my kid. At the time, Emory was a spunky, sassy 4-year-old (not much has changed four years later) who was so much more than just her wheelchair or communication device So, I decided to take matters into my own hands. I wanted a book about a kid being a kid, doing kid things. It was fine if there was a message because as a writer, I do feel like children’s books should have a point, but I mostly wanted her to see herself — a fun, loving, silly kid — who by the way also has a disability.
Now truth be told, I wrote “Meet ClaraBelle Blue” in a fit of frustration (and maybe a little bit of mama bear rage). How could an entire genre of books that is supposed to serve my child not include my child? It didn’t make sense and seemed terribly cruel and unfair. As I shopped the book around to a few agents, I found out why books like mine are not included. My child and children like mine (and possibly yours) are considered too “niche” for the publishing world.
I remember the feeling that came over me when I heard those words through the phone line. It was akin to the feeling I had when a child care center once told me that my child was a safety hazard because another child might trip and fall over her stander, so at age 2, she had to remain in the infant room. That feeling? You might be familiar with it. It’s rage. It’s pain. It’s frustration. It is a heartbreaking sadness. And if you’re anything like me, it culminates into the fiercest determination this world has ever seen.
Nothing about my child, or any child, is “too niche” to be seen in a children’s book, and no child is too niche to be recognized as existing in the world they live in. This awoke a giant in me, and I decided to self-publish “Meet ClaraBelle Blue.” My book is currently the only children’s book featuring a young African-American girl with a disability the cover, and once you read the book, you quickly discover that it just may be the only book of its nature.
This book that was once labeled as “too niche” to be considered for representation has quickly become not only my daughter’s favorite book, but a favorite in households across the country. With the story’s overarching theme of “ClaraBelle Blue is just like you,” and often hilarious images, I have been told parents have had a hard time convincing their children to pick a different book to read at bedtime.
With “Meet ClaraBelle Blue,” I set out to not only create a book my daughter could see herself in, but also a book that could help typically-abled children see that children like her aren’t so different from them. Inadvertently, the book has also helped parents start the conversation around disabilities, and keep it at a child-friendly level. Children of all abilities and races can relate to ClaraBelle Blue as they read about her making interesting “snacks” for her mom, trying to help with laundry, and playing her favorite childhood game, Duck Duck Goose.
However, what drives the story home for children and parents alike is the sweet, touching end of the book. I won’t give it away, but I can tell you I often have a hard time keeping it together when I get to the last few pages when reading it to my daughter, or to groups of children I visit in schools. I can always feel my throat getting a little bit tight. I’ll look around, and I can see the moms and dads wiping the tears at the corners of their eyes, and I know then that they got the point too. Needless to say, I don’t look around too much when I get to the end.
My goal is to have “Meet ClaraBelle Blue” on every child’s bookshelf and in every library and bookstore across the country. I know the story of a kid just being a kid is not “too niche” for kids to understand. This is also why I plan to release more books about kids with disabilities just being kids. “Meet ClaraBelle Blue” is the first book of the ClaraBelle Series, but I’ll soon be introducing ClaraBelle’s friends, like LuAnn, who lives with childhood anxiety disorder, JoJo, who lives with ADHD (attention deficit hyperactivity disorder); and ClaraBelle’s typically-abled/neurotypical best friend Tessa, driving home that necessary message of inclusion.
Right now you can only find the book available at Barnes & Noble, Amazon, and on my website, but if I have my way, it will be everywhere — and soon.
My kid is not too niche. Your child is not too niche.
The 14th of May is Mother’s Day in the U.S. — a day to celebrate being a mother or celebrate your mother. There are many for whom it is a bittersweet day to remember a mother who is no longer with you. No matter what your circumstances, it is a day to think about motherhood.
There are children in places around the world who don’t have a mother. Children born with a disability in third world countries, in places like Eastern Europe and Asia, are often discarded into orphanages. They aren’t given the chance to know what it feels like to be held and loved and picked up when hungry or in pain. It is these precious children that Reece’s Rainbow serves.
We find families for children who otherwise would spend the rest of their lives languishing in orphanages and institutions. We have worked for going on 11 years to find mothers and fathers for these precious children who were blessed enough to be born! More than 1760+ are home with their mothers right now.
In honor of Mother’s Day I am sharing the stories from four of our Mothers. Each one is at a different stage in this process of adoption and becoming a mother of a child in need of one.
A mother of a child with Down syndrome tells her story of how she learned of Reece’s Rainbow and what led her family to the choice of adopting another child with a disability.
The first time I ever met someone with Down syndrome was the day my son with Down syndrome was born. Michael was my second biological child, born just 10 months after our wedding, when we had become a new blended family of seven. His five older siblings, ranging from 8 to 21 years old at the time adored him and he brought us closer together as a family.
When I was pregnant with Michael and I told people in my local church family that my child was going to have Down syndrome, I kept getting the same response. People would tell me about another family who attended our church who had four… or five… or six… kids with Down syndrome. (I think they had all lost count.) In my naiveté I would think “What causes that?” and start worrying about the probability of all my future kids also having Down syndrome.
Of course, I soon figured out they had gained their chromosomally enhanced children through the miracle of adoption. But I was a little confused as to why anyone would choose to adopt children with Down syndrome. I mean, I was OK with having one child with Down syndrome since that is what I was given, but I didn’t think it would be something I would ever choose. (Please remember that I had still never met anyone who had Down syndrome.) Also my thoughts surrounding adoption were pretty much limited to it being something people did only after dealing with infertility. The reality of the orphan crisis, or institutionalized children were never on my radar.
After Michael was born I still didn’t know anyone else who had a child with Down syndrome. So when this adoptive mom from my church showed up on my “suggested friends” list I contacted her. Her kids were adorable and it turned out that they were in process to adopt another beautiful little girl with an extra chromosome from Bulgaria. Of course she was sharing a lot about the adoption, which led to me reading a lot about international special needs adoption in general. My eyes opened wide. It is hard to explain but I went from being completely clueless to feeling completely broken-hearted about the struggles of institutionalized children.
When I was watching my son do physical therapy, I would think about kids in cribs with no one who cared if they learned to walk. When my kids cried for me to come rock them at night, I thought about the kids who had no one to come and rock them if they cried. I would stay up late spending hours looking at pictures of kids on Reece’s Rainbow, crying my eyes out.
And then I took all that and put it in a box. I stopped reading the articles and looking at the waiting children. Because we couldn’t adopt, not then; maybe not ever. I wish I could say that in the waiting I spent my time advocating for orphans, or raising money for orphans, or committing myself to serious intercessory prayer for orphans, but that would not be true. I wish I could say I was OK with letting my heart be broken even when I didn’t have an action plan to go along with it, but that would not be true either. I felt powerless and inadequate and wondered why I felt this burden to begin with.
Psalm 37:4 says “Delight yourself in the LORD, and he will give you the desires of your heart.” I believe the reason he gives us the desires of our heart is that he is the one who gives us those desires in the first place. He places burdens on us so we will be spurred to the “good works, which God prepared in advance for us to do”. (Ephesian 2:10).
Of course I believe God follows an entirely perfect timeline in comparison to my short-sightedness and impatience. On January 24, 2017 we found out we were officially committed to adopt a little girl with Down syndrome from Eastern Europe. In the waiting we have grown, both as a family and individually, in ways that I believe will help us immensely on the journey to becoming adoptive parents. And I will never wonder again why someone would choose to have a child with Down syndrome. We are so lucky and grateful to soon be the parents of two.
Michelle began as one of our Reece’s Rainbow families, but has become our Grants & Operations Manager and then in March when our Founder/ED retired has now taken on the Executive Director role! She and her husband Brian adopted Lilya in 2010. One of their other five children, daughter Ruby, was born with Down syndrome which is what led them to Reece’s Rainbow.
Once we started the process, in our hearts, Lilya was ours. We had to temper our expectations – we knew it wasn’t official until we met her and accepted her referral in country. But to us, she was one of our own, and we would do everything we could to bring her home to us.
For me, the process mirrored my pregnancies with my other children. The waiting, the expectations, the dreams for the future… and right from the start, from our initial commitment, unconditional love.
When the paperwork was completed and we were waiting for the next step – the steps that were out of our control – that wait seemed endless. One of the greatest gifts we received during that endless wait was a short video. It was a brief video, only a couple minutes, and there was the shortest snippet of Lilya. This tiny view of a little girl – she was not the subject of the video, but she was the center of the universe for us. I watched that video more times than I could count – the little girl with the crooked bangs was no longer a photo, an image — she was a real life, walking, wheezing, tiny girl.
Even now, almost 7 years ago, I remember the smallest details of the process. We were halfway around the world from our children at home to bring another child into our family. To us, she was ours, just as much as our other children. Driving around the capital of a foreign country, with the referral paperwork in hand… sitting and waiting in the office of the orphanage director… and in enters this tiny girl who had no idea how her life would be changing.
Visiting Lilya at the orphanage was such a unique experience, a moment in time unlike any other. We would go play with her, and she soaked in the attention of these two new adults with the funny language. And much as my memories of my children being born are etched in my memory – I will never forget the days of walking up to the orphanage and a tiny blond girl running out to meet us with her arms wide open.
Crystal is a Reece’s Rainbow adoptive mom but also a professional writer. I’ve included the link to her contributor bio here on The Mighty! She is sharing about their adopted daughter, Guyana who is already home.
I set her down in the sand, watching for a reaction. Her Hershey-brown eyes, already nickel-sized, grow even bigger, and her hands by her sides freeze. The newness of ancient rock and shell and bone bits touching her skin would have overwhelmed Guyana a year ago. Though she’s still unsure now, she trustingly glances up for reassurance, to make sure she’s still safe. “What is this place?” she asks, dramatically gesturing toward the water.
That’s what used to separate us, I think. But I tell her it’s the ocean. Guyana takes it all in, nothing in her five years of Armenian orphanage life preparing her for the sight of the Atlantic. Her daddy scoops her up, her 24 pounds nestled safely in his strong arms. And together they step into the waves. Soon, after a brief moment of panic, she is floating on her back in wonder, her paralyzed legs held up in total trust by someone who crossed the world for her.
Watching them, I realize I feel unsure at times like Guyana does now.Last Mother’s Day, I flew eastward to become a mother for the fourth time. Since our newest little birdie came home, her smile, giggle and extraordinary spirit have kept us all flying high. But I have had brief moments of panic, too. I’ve touched newness — unpronounceable diagnoses, bureaucratic hospitals, insurance nightmares, public ignorance — that nothing in my 32 years prepared me for. At times, I have felt overwhelmed. “What is this place?” I ask dramatically.I glance upward for reassurance, to make sure I’m still safe. And inevitably, someone scoops me up and swims for me, and I’m safe in the arms of a community and family who see not only my girl’s worth, but mine, too.And together, we keep stepping into the waves, floating in total wonder.
Monica is a mother from Norway and a very faithful Reece’s Rainbow warrior! She and her daughter are an invaluable help with the RR twitter & Instagram! She is introducing one of our waiting children. This is a child we have on our website in need of a mother.
This is Lucas. He lives in an orphanage in eastern Europe but what he really needs is a forever family, a mom. There are so many children in the orphanage and but very few nannies.
Lucas doesn’t speak much but he knows how to ask for food, because he is always hungry. He used to cry a lot, felt lonely and hopeless, but the nannies may now be giving him medicine to sedate him.
He will soon be transferred to a mental institution for adults, and there he will be left in bed all day, because there are fewer grownups there.
The good news is that Lucas can still be adopted, though the odds are stacked against him.
Lucas has cerebral palsy that affects all of his limbs. That means he will need therapies and medical care. The good thing with CP is that it won’t get worse. It is what it is, and his condition can improve with the right therapies. Where he is now, he doesn’t get any therapies at all.
He was born in 2008 which means he is no longer a sweet, squishy baby. He’ll be 9 this year and parents looking to adopt usually want babies as young as possible. Lucas wasn’t made available for adoption until he was older, so he lost that chance.
As well, Lucas is a boy. Did you know that for every boy adopted, two girls get adopted? A lot of boys sit and wait like he does. He is such a quiet and sweet boy.
For Mother’s Day I know Lucas wishes for a new Mama. He can bring so much joy. He loves to smile, and loves music. He dreams of smiling and laughing, even singing with a forever family!
Please visit his profile on Reece’s Rainbow to see more photos of him, learn more about him or inquire into adopting him!
We would like to wish all mothers, every kind of mother, a very Happy Mother’s Day! If you would like to learn more about how to adopt a child through Reece’s Rainbow, please visit our website. We help families raise the money they need to offset the expenses of international adoption. We also have many ways you can change the course of a child’s life forever, even if you aren’t in a position to adopt. We have both a child and family warrior program if you want to focus on one child or family. As well, one of the easiest ways to help our children find their forever families is simply sharing their need on social media. You never know if that child’s soon-to-be mother will be reading your post!