Becky Carey

@becky-carey | contributor
Becky Carey is busy wife and mom of three: one preteen stepson and two toddler daughters. She is also an author of a children’s book. As the mom of a child with Down syndrome who happens to also be a cancer survivor, Becky shares her personal experiences about parenting through her blog, where she navigates life’s ever-changing directions.
Becky Carey

People With Down Syndrome Are Not 'Always Happy'

“They’re just so happy all the time; not a care in the world. I envy that…” A woman said this to me yesterday morning in casual conversation, referring to people with Down syndrome like my 7-year-old. She was sweet as she spoke, and I could tell she was genuinely coming from a good place. My mouth wide open, unable to respond, I briefly closed my eyes and took a moment. I know myself and I likely wouldn’t have said anything if I wasn’t getting my teeth cleaned, so I withdrew to my comfort zone, where I could process and write it out later. I also just got home from a retreat for moms of kids with Down syndrome, and I’m feeling a little soap-boxy and inspired. This phrase… sigh. The “they’re always so happy” phrase. If you have a child with Down syndrome, you probably know what I am talking about, and maybe you can relate. It doesn’t offend me, I swear. Believe me, there are far more harmful perceptions than this. It does, however, carry a certain sort of ickiness that implies individuals with an extra chromosome are angelic. It’s a common blanket statement that groups all people with Down syndrome by suggesting they live their lives blissfully unaware of knowing anything other than happiness. That they carry on without having real feelings. I’ve never heard anything so well-intended that makes me grimace as much, and yet I hear it often. The frequency with which I hear this sentence tells me how much farther we have to go, so I’ll share my two cents. Having Down syndrome has not shielded my daughter from experiencing a wide range of emotions. It has not hindered her ability to process them either. I know this to be true because I have fought back tears as she cried in my arms when she felt left out. I have watched quietly from the other room when she tells her little sister she is annoying her at breakfast. I listen as she expresses her frustration every morning when she attempts to tie her shoes independently. I’ve witnessed her prideful victory dance after she whooped my butt in a game of Trouble. She has screamed with excitement when she received a birthday party invite from a friend only to be incredibly jealous when her sister got an invite of her own a few weeks. And if someone ticks her off, you better believe she will let them know. My daughter is compassionate and shows empathy toward others accordingly. She knows the weight that words can carry, and she absolutely feels it when they are used to hurt. She cries when she is upset, and sometimes she yells when she is mad. She laughs when she finds something funny and hugs when she feels the need. She says things like “I love you,” “you’re the best,” “you’re really annoying me,” and “you’re a meanie-head,” and she means all of it. An extra chromosome doesn’t mean her thoughts and feelings are the exact same as any other person with Down syndrome. She is not a carbon copy of someone else. That 47th chromosome doesn’t make her live in a state of constant happiness. Nor does it mean she is always nice or that she never makes mistakes. She learns life lessons the hard way and apologizes when she has let someone down. She certainly is not happy all the time, and we do not expect her to be. Like our other children, we encourage her to express herself any way that is comfortable and share how she is feeling. To say when she feels hurt, angry, abandoned, sad, frustrated, annoyed, uncomfortable, joyful, bored, amused, confused, nervous, excited, ashamed and of course when she is happy. She is a real person who is capable of understanding and experiencing emotions, complete with her own set of thoughts and views on life. Just like you, me and every living human being, she has feelings and they are valid. To suggest anything otherwise devalues her and everyone else this phrase is intended for. We can’t possibly envy something we all experience, even if it may translate differently from person to person. Appreciate her honesty and genuineness. Acknowledge her feelings and know she is aware of the world around her. None of which has anything to do with the fact that she has Down syndrome.

Becky Carey

Where In the World Is Down Syndrome Going?

I really should avoid drawing attention to this negative topic today, on my daughter’s 6th birthday. However, it is probably as good a day as any to discuss an issue that is weighing heavy on my heart. During a few moments of free time this morning and afternoon, I shamelessly scrolled through Facebook to pass some time because…why not? Within a few swipes up, I realized nearly all my news feed was saturated with posts about CBS running a story on Iceland and the country’s extremely high termination rate for babies given a prenatal diagnosis of Down syndrome. It was probably more noticeable to me because a large majority of my friends on Facebook are fellow parents of a child with Down syndrome or self-advocates. Other countries like Australia, are part of a very similar discussion. I would like to point out that CBS actually used this headline: “Iceland Is On Pace To Virtually Eliminate Down Syndrome Through Abortion.” On pace? How nice. Are they racing someone? The idea of eradicating Down syndrome is a controversial subject, and obviously it does not sit well with me. My college roommate used to always say, “Variety is the spice of life, my friend.” While the phrase used to crack me up, she was absolutely right. Maybe she wasn’t referring to people as much as cheap beer selections. But seriously, since when do we as the human race get to decide a population of people no longer gets to exist or that those lives have no value? Most importantly, what are the reasons that justify this? Six years ago today I sat in my hospital bed, isolating myself from reality while I digested the news of my daughter’s surprise birth diagnosis of Down syndrome.  Like many unsuspecting parents, our world was rocked.  When we were offered prenatal testing while I was pregnant, we declined knowing we would not change anything about our pregnancy, and that our arms and hearts would lovingly welcome our child.   Did that make receiving the diagnosis less difficult? No. Were we scared? Out of our minds. We had no idea what to expect. We were left with our own drawn up versions of what we thought Down syndrome was based on, what we could remember as kids — which was basically nothing. Thankfully for us, our doctor was compassionate and kind. She was all we had at the moment to tell us anything about a baby born with an extra chromosome. While she did deliver some common, basic facts about Down syndrome, she did so in an unbiased and professional manner. She also reassured us our daughter would live a full and wonderful life with us, and that she was certain we would all be fine. I can only imagine what these parents in Iceland are told their lives will be like with a child like mine, and how untrue what they’re told really is. Conflicting, outdated and biased opinions about Down syndrome as a whole. But you know what? It is happening right here, too. The horrific diagnosis stories I have been told by mothers here in the United States continue to blow my mind. I wonder if doctors and parents saw another side of Down syndrome — the human side — would the percentage decrease? Truthfully, I can only speak from my perspective, and I am comfortable with my beliefs. While I am aware there may be other factors and circumstances such as additional complex medical situations that contribute to the decisions made, I wonder about the decisions made to terminate based solely on the diagnosis, and whether or not the information given is accurate and consistent. Let’s not forget about the individuals with Down syndrome who are alive. What does this message of “eliminating Down syndrome” say to them? That they don’t matter either? It sure sounds that way. Patricia Heaton for the win on twitter on Monday: As parents, we spend a lot of time fighting and advocating for our children. Much to our dismay, we often seek to prove our children are capable of so much more than the limitations society places on them. We push for inclusion in school and the workplace, we fight for health care coverage and we encourage people to see their value. Now we fight for their right to walk on this earth. You do not need a heart of gold to raise a child with Down syndrome. But you do need an open mind, the courage to embrace something unfamiliar and the belief that each life has value. You know what? We are fine. Totally fine. My beautiful girl, charming and wicked smart, does not suffer from having Down syndrome. She never has. Her siblings have not suffered either. Anyone who has met her would tell you how awesome they think she is. Something prenatal testing cannot predict about anyone. Is raising her easy? Not always. Raising my spirited 4-year-old without Down syndrome isn’t easy. Helping to parent a stepchild also isn’t easy. There are few things about parenting that come with ease. Period. The hardest part about having a child with Down syndrome has not been the diagnosis itself; it’s the annoyance of having to explain she deserves to be here. We are weeks away from sending our 6-year-old to her first day of first grade in a mainstream school, and today we celebrated her 6th birthday with her friends. In another part of the world, parents are being told their unborn child (who may or may not be born with Down syndrome) does not have a place here. Where does this end? If Down syndrome is no more, who else will fall under the magnifying glass? While Iceland is “on pace” to “eliminate,” or kill, Down syndrome, I am on the fast track with a community of others who share the world is big enough for everyone — including people with Down syndrome. That’s just my two cents on the matter. Follow this journey at Dear Tessa. We want to hear your story. Become a Mighty contributor here .

Becky Carey

Sharing Our Daughter's Down Syndrome Diagnosis With Her Siblings

The moment we learned our daughter was born with an extra chromosome, my mind raced in many directions.  I was particularly struck by what Down syndrome would mean in the lives of her siblings, even though at the time she had just one.  As she grew, I watched her older brother dote over her the way he would have if she did not have Down syndrome. In time my lingering concerns about the impact her diagnosis might have on him began to slip away. Kids are innocent and often quite intelligent. They know what they are taught, and they also absorb the world that surrounds them; how they are influenced helps shape how they view things and who they will become. It is a conversation I have shared with parents just like me over the last five years. Is specifically sharing the diagnosis with siblings necessary? I really believe it is a personal choice; however, I knew early in my daughter’s life that I needed and wanted to share her diagnosis with her brother, and that I would do the same when we had more children. To me, Down syndrome was not secretive. While it is not our entire life, it does play a part in our family. A dash of creativity teamed up with some inspiration and a tag board helped create this special moment for my family a few years ago. My stepson was 7 when we decided to tell him, and his sister was still a baby. Questions about his baby sister became more frequent – like why she had so many therapists and doctors’ appointments, and why she could not sit or crawl like her cousins. We often shared with him that kids, especially babies, develop differently and at their own pace.  But he knew something was different. Now, nearly five years later, we found ourselves facing similar questions from our youngest about her older sister.  Their questions have always deserved honest and real answers. We wanted to empower our children with knowledge and positivity about Down syndrome, and encourage them to celebrate what makes what makes us all different. It was really important that our kids learn about the diagnosis from their parents first; that way they could be prepared with appropriate responses to conversations that may happen in the future.  It is my sincere hope that by doing so, we are building up their confidence to advocate with their whole hearts. That is not to say we sugar-coated anything.  Our children understand that parts of having an extra chromosome are challenging, but they have become their sister’s biggest cheerleaders. And more importantly, they never treated her differently after learning about her diagnosis. My daughter’s siblings do not label her by her diagnosis, like I was once worried about. They have awesome relationships – typical sibling relationships that include everything from annoying one another to playing together. Tessa, who has Down syndrome, has also been able to talk about her own diagnosis with her family, which has made for some heartwarming and teachable moments in our home — like if Down syndrome ever goes away, or if our dog has it, or how come only one of us was born with it. There is nothing I would change, and I do not regret sharing with our children all that an extra chromosome brings to our party. Since sharing our home video project on YouTube in 2012, we were contacted to create a story that has helped parents share what Down syndrome is with children in the home, classroom or elsewhere.  “ 47 Strings:  Tessa’s Special Code” is a children’s picture book that explains Down syndrome in a kid-friendly and positive way that is easy to understand.  A portion of the proceeds benefit the Down Syndrome Diagnosis Network, an amazing organization that supports families who have just received a new diagnosis. We want to hear your story. Become a Mighty contributor here.

Becky Carey

Giving My Daughter With Down Syndrome More Independence

My daughter is ambitious and driven, and I will happily take some credit for that along with her dad. Even though this is sometimes worrisome, I marvel at her will to try new things. After all, this is what we have been pushing her to do since her first therapy sessions as an infant after we learned of her Down syndrome diagnosis — to face obstacles with courage while slightly nudging her outside of her comfort zone. We hope to encourage and inspire her to rise above life’s challenges; to show her what she is truly capable of accomplishing. Our challenge now is knowing when to hold her hand and knowing when to let her fly. I find myself conflicted between the two more often than not – like a constant battle of whether or not I am making the right choice with either option. The tide is shifting now. Where I was once reassuring her to make her leap, she is now looking for me to let her go.  She is getting a little older, a little more brave and definitely more vocal about her wants and needs. With that comes the tightening of my grip, when all along I have been promising to loosen it up as she got older. This little girl, my firstborn, is so curious about the world she lives in. Yet I sometimes catch myself holding her back from experiences because I am afraid for her. In stark contrast to everything we have been preparing her for, allowing her to further explore her independence feels more difficult than ever. It comes with the territory. For me, being a mother to a child with a disability has caused the emotional tides to change in different phases of parenting her. While these phases are unpredictable, they usually offer a unique vantage point, a place where I can look out and evaluate where we are together. Perspective might hit me at a doctor’s appointment or when she is standing on the edge of a diving board; places that prove how far she has come or how much ground we have yet to cover. It doesn’t escape me… the blessing of her being able to have these opportunities, the option to choose things for herself and the chance to see who she is becoming as she turns another year older. I am undeniably grateful for that. She is getting ready for kindergarten this fall and going to her first friend birthday party next week. These are wonderful and amazing things. Things I once worried about, but now I am watching her thrive. For me that is the most beautiful part of this journey — knowing we can still do this all right alongside her, while keeping enough distance for her to seek experiences for herself. Knowing even more that if we allow her to keep trying new things, she will only continue to learn and grow tenfold. And, finally, having the revelation that parenting a child who happens to have Down syndrome isn’t so different from parenting a child without it.

Becky Carey

How My Daughter Would Respond to People Who Call Her a ‘Downs Child’

October is Down Syndrome Awareness Month. One of things the Down syndrome community strives for in our goal for awareness is using person-first language. In short, it means the person comes before the disability in a description. I’ve had people refer to my daughter, Tessa, as a “Downs child” or that “Down syndrome girl,” instead of referring to her as a child with Down syndrome. When people say “Downs child,” we feel that automatically defines her. When in reality, her extra chromosome is a small part of the bigger picture. By encouraging others to use people-first language, it’s my sincere hope we can look past a diagnosis and recognize people for who they are — people with names, hobbies, talents and feelings like my daughter. My name is Tessa. I was born with Down syndrome. I am not Down syndrome. I am not identified by my extra chromosome. My name is Tessa. I am not a “Downs kid” or “that Down syndrome girl.” I am a person…with one big beating heart. My name is Tessa. I have feelings and emotions just like you. I am expressive. I have good days and I have bad days. Sound familiar? My name is Tessa. I am complex and beautiful. I am simple and sweet. I am way more than you think you know. My name is Tessa. I am not special because of my chromosomes. I am not a mistake. I was perfectly created to be me. My name is Tessa. I am smart. I am funny. I am capable. I am not suffering. I am strong. My name is Tessa. I have family who loves me. I am accepted, not judged, by my friends. My name is Tessa. I am not a punching bag for the narrow-minded. I am a positive influence in this world. I have a lot to offer. My name is Tessa. And that is what I like to be called. Follow this journey on Dear Tessa.

Becky Carey

Response to: Leukemia Is the "Good Kind of Cancer"

I took a break this morning between dropping off Tessa, my daughter, at school and an appointment for myself. I stopped at my favorite little coffee shop and waited for my latte so I could go sit in the corner and return emails. As I waited, a woman approached me. “That’s a sweet sticker you have there,” she said. Confused by what she was referring to and it took me a moment to remember Tessa placed this sticker near the bottom of my shirt this morning. I smiled, “Oh! Thank you. I forgot my daughter put it there this morning. She was putting these stickers on everything today.” The sticker reads “I Care For Kids With Cancer.” We have a few of those laying around that somehow resurfaced after a good house cleaning this week. She paused and looked at me with a curious smile, and in that moment I felt very driven to tell her my daughter was a cancer survivor. That should explain this sticker, I thought, since it seemed to warrant some sort of explanation. Clearly I caught her off guard. “Oh wow. May I ask what kind?” “Leukemia,” I said. After brief conversation regarding her slight connection to the pediatric cancer world came a phrase that punched me in the stomach and nearly knocked me to my knees. “This seems a little weird to say to a stranger but, you know… if you’re going to get cancer, leukemia is the one you really want to get. That’s the good kind.” No. No it is not. There is no good cancer to get. From the time Tessa’s doctors first uttered the word leukemia to us, I can assure you it was not at all what we had hoped for or wanted. There were no high fives or cheerful embraces. I stood there quietly with my eyes staring at her blankly, holding on tight to my tears. In what felt like ten minutes (but was realistically five seconds), I relived the horror of what leukemia did to my daughter and what it stole from my family. Eight months of worry leading up to her diagnosis. Six and a half grueling months of chemotherapy and hospitalizations. Nearly ten weeks of isolation. Debilitating nausea and violent vomit attacks. Handfuls of hair laying on her pillow and on my lap — lord how the falling hair hurt me. Trips to the hospital barber to shave the last few strands of hair from her beautiful head. Skin rashes and mouth sores. Central lines. Tape stuck to and ripped from her body on a daily basis. Sponge baths… awful sponge baths. Well over ten bone marrow biopsies, and too many needle pricks and lab draws to keep track of at this point. All of this and so much more at the tiny age of 2. Certainly this woman wasn’t suggesting Tessa’s courageous fight against cancer was a breeze, was she? Because she believes leukemia is the “good” kind? No, she had to be referring to the survival rates… right? Just for the sake of that speculation, take a look at St. Jude’s statistics for AML survival rates here. It says the five-year survival rates range from 65 to 75 percent. I hope these are not viewed as “good enough” statistics because, to me, they are not. I collected my thoughts, recalling what I have learned from my therapist: we can’t do anything about what people say, but we can do something about how we react. I took a deep breath and tried to think of an appropriate response. “Well, sort of. For the kind of leukemia my daughter had, and given the fact she also has Down syndrome, statistically there does tend to be higher survival rates for this situation,” I said, followed up with “But that isn’t always the case and, after all, those are just figures.” Here we go again with statistics and ratios and probability. What the hell kind of answer was that, I thought to myself. Tell her she has no idea what your daughter went through. Tell her about the relapse scare. Tell her how rare Tessa’s case was. Tell her how about the fears — all of them. Tell her there is no way she understands that gut-wrenching pain. Tell her how much that just hurt you. Come on, just tell her! But I couldn’t. Because I could see she believed she was coming from a good place, and I believed her intentions were from the heart even though her words cut me deep. Just because Tessa survived does not mean her fight (and victory) is any less valid than someone else’s. It also does not mean anyone’s else’s fight who did or did not survive because of any kind of cancer is any less honorable either. And I can also tell you firsthand after living the cancer lifestyle, others I knew then with cancer weren’t envying someone else’s. Do you want to know why? Because every kind of cancer sucks. Everyone is fighting to survive — no matter what kind of cancer they have. The only victory lap I ever did because of leukemia was in honor of Tessa as she walked her first survivor’s lap at our family’s first Relay For Life event. I left her with the woman with this. “She is 3 years old now and doing very well. She’s in full remission. Thank you.” She smiled and wished me well. Maybe I should have told her. Perhaps I could have shed some light on my viewpoint about cancer. But I didn’t, and I feel OK about it. I took my latte back to the plush chair in the corner and reflected on what had just happened. Only a few tears this time. This is not the first time someone has made a remark about Tessa’s Down syndrome or her leukemia, well intended or not, that just hurt. I know it will be far from the last, too. These times are unpredictable. They appear out of nowhere and I am forced to confront words and phrases I would rather avoid. I wore that sticker on my shirt intentionally after my coffee shop run-in for God only knows how long today. Somewhere throughout the day I lost it, but it didn’t leave my mind. Had I only known this sticker would have stirred up so many emotions in me today, I may have taken it off. But man am I glad I didn’t. I do not care how old or young a person is. I am not interested in what specific kind of cancer someone has. All for one and one for all. I am throwing my fist up in solidarity to everyone facing this awful disease, in all of its forms. To the woman in the coffee shop and to people everywhere, please know this: There is no good cancer to get. Period. A version of this post originally appeared on Dear Tessa. The Mighty, in partnership with Fuck Cancer, is asking the following: What do you wish you had found on Google when you were first diagnosed? Find out how to email us a story submission here .

Becky Carey

How Our Whole Family Benefited From an Extra Chromosome

Dear Down syndrome, By now we’re becoming well-acquainted with one another. I suppose you could even say we’ve developed a bit of a history together, complete with misunderstandings, anger, frustration, sheer joy and love too big to grasp. Until you came into my life, I was a naive 23-year-old newlywed who thought she had it all figured out. It has been quite an adventure so far, wouldn’t you agree? Before you came around, I was a fiery and wild-spirited young woman, jumping from job to job and indulging too much on weekend festivities. Even though I thoroughly enjoyed my fun lifestyle, I wanted to be married and have a family early because I already “knew” how life worked – -get a job, fall in love, get married, have babies, live. While that plan seemed to be falling into place, I was only seeing the big picture with blinders on. I was totally oblivious to everything that actually existed outside of my plan. Like Down syndrome. I became pregnant just three months after I got married. I felt great, and as far as I knew, I was rocking my pregnancy. My husband and I elected to skip any prenatal testing and to even forego the standard 20-week ultrasound. I remember the conversation in our living room the day before we could have had testing done. “If anything happens, it’s meant to be, and we won’t change a thing. Let’s not stress ourselves out. We have no idea.” My husband’s words stick to me like glue even today because he was right. We had no idea. We hadn’t even the slightest clue that when our daughter would arrive, she would greet us with a shocking surprise. What we needed was a hefty dose of reality, and you were the one to deliver it. But you, Down syndrome, you already know all of this. Because you were there all along waiting to reveal yourself. Our daughter’s birthday shared the spotlight with the possibility of you. In that moment, I was forced to face the unknown. As terrified as I was, I learned quickly that loving my daughter fiercely included embracing the parts I was not prepared for. And to you, I have this to say. Thank you. Thank you for remaining steadfast during the heartache and for allowing me time to understand what Down syndrome means. Even though you crashed into our lives like a tidal wave, thank you for weathering the storm right along side us. Thank you for helping me find contentment in your presence. Thank you for opening my eyes to a brighter world and for exposing me to hidden treasures I know I would have missed otherwise — for showing me beauty exists in many forms. Because of this diagnosis, I’m equipped to face challenges with strength I didn’t have before. Thank you for reminding me to slow down and drink up even the tiniest of moments and milestones. There are days when I wish you had no part of her life or mine. Periods of grief move in and out in gentle phases, and the tears fall. I think I expect it will be this way for a long time. I could be angry about this road, the one I wouldn’t have voluntarily reached for, but without you, I wouldn’t know the things I know now. I wouldn’t have seen the things I’ve seen. I wouldn’t love the way I love. I’m thankful for the challenges and the triumphs shaping my entire family, and I’m still learning along the way. You teach me something new every single day. Most important, you make my daughter who she is. And that’s always something to be proud of. You’re exactly what I needed when I didn’t know I needed it. You chose my daughter knowing we would all benefit from an extra chromosome. Life has a funny way of taking us by surprise. Love, Me 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 to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Becky Carey

Why the 'R' Word Is Not 'Just a Word'

Every year, I try to create a post highlighting why I feel it’s important to support and practice the “Spread The Word To End The Word” movement. In an attempt to sum up just how I feel, I’m going to redeliver last year’s post with a few changes. We live in a society where having an opinion is often an automatic right to discount the opinions and feelings of others and, essentially, where compassion is lost in a cloud of arrogance. Let this not be a lecture. Let this be a simple message. I wrote this post in the hospital last year while my daughter, Tessa, was finishing her last round of chemotherapy for what I hoped would be for the rest of her life. I remember a fire igniting in me when I realized that in addition to fighting for her life, she was also fighting for respect in everyday life outside of cancer. There are many words I can use to describe Tessa’s journey to today. “Retarded” is not one of those words. And it never will be. On March 4, 2015, I stand united with thousands of others and encourage people everywhere to hear our voices. We ask for this pledge to be signed, understood and practiced — not just today but every day. I’m talking about the movement ending the use of the r-word. “Retard.” “Retarded.” It is more than a word. It’s a classification labeling people who don’t deserve the label. It’s a word that minimizes the vast accomplishments my daughter and others make each and every day. I’m not stripping anyone of their first amendment rights (yes, I’ve heard that one before). I’m challenging people to be better for others and for themselves. Why? Because we need a reminder to be considerate, compassionate and polite. It might not mean anything to some people, but to many others, like me, it does. This world places limits on people with intellectual disabilities and challenges them to rise above. But those who place the limits fail to stick around for the good part. Not only do these people rise above, they soar far above the expectations. They conform to the standards of everyday life. They persevere. They do it all, but the word still exists. It’s still used. It’s still hurtful. Tessa is more than the word used to reduce her. She deserves better. Everyone does. I’m not over-sensitive. I’m a mom of a child with special needs. I’m a mom of typical children. I’m a human being asking for a shred of decency and respect. Please spare me the speech about the r-word implying nothing about people with differing abilities, because it absolutely does. Preaching that we are over-sensitive is a bad excuse for poor behavior when it’s so easy to be better. So if it is just a word, then please pick a different word. A better word. Sign the pledge. Remember it. Pass it on. *Steps down from soap box.* Visit http://www.r-word.org to learn more. This post originally appeared on Dear Tessa.