So this has been happening! So proud of our girl. Her strength and determination are always surprising me. Never underestimate!
A couple of months ago the website The Mighty published one of my posts and it went on to be shared on social media over 14,000 times! I was super excited and more than a little curious as to where all of these shares were coming from. So I took to Google searching for that picture of my gorgeous girl in the white dress featured in the post.
In hindsight, I should’ve known better. Of course you had lovely photos of kids with beautiful brushfields and links to blogs championing the successes of people with Down syndrome. But then there were the memes – pages after pages of images of people with DS plastered with hurtful phrases.
“My mom calls me special”
“I can count to potato”
“Mom said I have Get Down syndrome”
Those are the tame ones. My stomach flooded with fear, rage and sadness. The kind of sadness that stays with you even after you’ve moved onto another thought and you’re forced to remind yourself why you feel so bad. I also felt ashamed – had I ever found anything like that funny before?
Internet, since having a child with Down syndrome I’ve known you to be a source of information, education, reassurance and comraderie. I guess I always knew the opposite was out there, but, Internet, why do you have to be so demeaning and hurtful? Will people who are innocently searching your pages see the Down syndrome I know or the one portrayed by these memes? I guess it’s naive to think that we might eradicate them all, but I wish people would see our side of it.
I wish they would see Baby Emily, a heart warrior showing her amazing strength as she fights to recover from her multiple surgeries. Or sweet Josee, 3 years old and full of confidence, working the camera as she reads and counts for her Facebook audience of over 20,000. Or Sam and Mattie, best friends who, with the help of a Kickstarter campaign, just made a Spring Break zombie movie that is professional and gloriously mainstream and just as vulgar and rude as you would expect from teenage boys!
I wish they would see my little Frankie. See her steal grandma’s phone and knowingly run her pointer finger over the screen. Watch her determination as she fits pegs into little holes during OT. Watch her shove her unwanted dinner underneath her highchair’s tray as if she’s fooling us. Witness her triumphant first steps.
I know people sometimes question why a lot of us parents of children with Down syndrome choose to share so much of our little one’s lives. Is it safe? they wonder. To them, I say, It’s necessary.
It’s essential to show the adorable photos, the accomplishments and the milestones. The public needs to see our kids reading and playing, attending school, making friends and generally being kids. It needs to know that the person in that photo that someone stole to make a hateful meme has a mother and a father, siblings, grandparents, friends and often an entire community that love them and that stand behind them.
No one can hope to control you, Internet. But we can continue to feed you the wonderful stories and positive images that make up our lives in the spirit of hope and education. So that next time one of your users stumbles across a derogatory photo, they will simply shake their head and move along, knowing that people with Down syndrome are not to be laughed at.
I was going to give the sappy posts a rest for a while, but suddenly, it’s Mother’s Day and seems sort of required…
So there’s this moment that just so happens to be the best one of my entire life. And I’m so lucky to have a picture of it. This is it. The exact moment my babies met for the first time.
Though I had dreamt of it for so long, I was nervous and anxious. We have a big gap between our two. It wasn’t what we wanted, it wasn’t what we planned, but if we’ve learned nothing else we know that we have little, if any, control. We had wanted Frankie with all of our hearts and souls, but during my pregnancy I kept thinking What 5.5 year old wants a baby sibling? The consolation was we were *sure* it was a boy!
I called my parents in the morning to tell Tristan the news. “Mommy had the baby! You have a little sister.” A sister? He seemed unfazed, but he’s not good on the phone. He gets that from his dad.
So with the doom and gloom of a Down syndrome diagnosis already hanging thick in the air – by this time the hospital pediatrician had visited us and had told us it was suspected – I was now anxiously waiting for my parents to bring Tristan up to the hospital to meet his baby sister. A moment that I was sure would bring indifference, uncertainty and at worst, disappointment.
But then this happened. He came over to my bed side, I held her out to him and he – unprompted – bent over and kissed her forehead so sweetly and so tenderly. My heart nearly burst.
In just one gesture my little boy showed me the very definition of love and acceptance. He welcomed her into our little family without the slightest hesitation, like he had known her his entire life. He knew in an instant what we were struggling with since she arrived early that morning – she belonged with us.
You know I’d be lying if I said that this meeting of these two beautiful souls put ALL of my fears about Francesca’s future to rest. But, at that moment, I was sure she had a brother, a friend and a protector like no other for all of her life. And I felt a sense of peace enter my heart.
In case I haven’t said it my children are pretty amazing. But yours are, too.
Happy Mother’s Day!
Why are we so afraid of Down syndrome?
It keeps me up at night. This question. I lie there and try to put my finger on it. I try to remember what it was like before Frankie was “just Frankie.” When “My baby has Down syndrome” was still my first thought when I opened my eyes every morning.
I look at Frankie’s face, her body, her movement, her features. I scrutinize her. Can people tell? I think. Are they scared of her? Why would they be? Is it her nose? Cute as a button. Her eyes? So gorgeous. The way she scoots? Adorable and innovative. The way she pulls to stand? So strong. The way she smiles hugely as she manages to wiggle away from her therapist? So smart and so cheeky! I look at all these features that people associate with Down syndrome and think Nothing scary here.
“I can’t do this,” I said when we got her diagnosis a week after she was born.
“You can. We will,” my mother replied.
“I don’t want to do this.”
“You have to do this,” she said.
I hope you don’t think I’m the terrible person I sounded like. I was shocked. I was uneducated. I was scared.
Now I see a pretty, determined little girl making her way from baby towards toddler. Maybe a little slower than others, but fiercely nonetheless. But then I saw limits, dead ends, unteachability. Exclusion. Slowness. I saw only failure. I was ignorant and that made me afraid.
The truth is, I shudder to think what I might’ve done if I had had a prenatal diagnosis and therefore had known Frankie was going to be born with Down syndrome. If I was presented with tons of “she will nevers” and had a grim future laid out for us by some doctor who couldn’t possibly know HER. Some figures estimate that 90% of pre-natal diagnoses end in termination. Yes, I was scared when she was born, but she began educating me the moment I held her. I was lucky I had the most beautiful distraction from my thoughts of utter doom.
But it’s easy to love a little baby, right? What about teenagers and adults with Down syndrome? Are they scarier? In the beginning, as I was still processing things, I remember saying that I was sure Frankie would be an adorable child, I was more worried about what she would be like as an adult.
We are a society always striving for bigger, faster, stronger, smarter and when you’re faced with a diagnosis where you think none of that is ever going to be achievable, you start to panic. What if my child needs help – possibly a lot of help – to walk, to talk, in school, at work, in life? What am I supposed to do? Will we ever be happy again? What will people think?
I think I was mostly afraid of that stereotype of an adult with Down syndrome, bagging groceries with garbled speech and a big smile. Let’s forget for a minute that that is not necessarily a reality for many, many people with DS. Let’s think instead – what exactly is wrong with that? What is wrong with a person who is doing an honest job and doing it well, doing their best with what they’ve got and doing it with a smile? If that person is happy and if that person is loved, what does it matter what anyone else thinks?
I think a lot about how we got this way. How we came to a place where we’re afraid of people who are not at the top of their class, who are not prom queen, who don’t go on to earn a six figure salary with a higher degree from a prestigious university. People who live ordinary lives and do ordinary jobs. The reality is that very few people actually go on to do those grand things, but there’s something about knowing from the get-go that they’re not even possible that makes it all a game changer.
But I’ll be completely honest – if I had read this when we first got Frankie’s diagnosis, I wouldn’t have been comforted. I was still unable to accept that my child might be less than the best. Less than successful. Or what I had defined as successful at that point. I was very much “that’s fine for you, but that’s not us.” I was scared that Frankie wouldn’t be smart or pretty or regarded in any way. That her life would be lived under the radar basically unrecognized by anyone but her immediate family.
If you’re that mom right now, let me assure that your baby’s future is as bright as anyone else’s. That he or she has options. There are people with Down syndrome blazing trails! Madeline Stuart: Beautiful Model! Tim Harris: Successful Businessman! Jamie Brewer: Talented Actress! Megan Bomgaars: Savvy Entrepreneur! Chris Burke: Respected Advocate! Karen Gaffney: Intelligent speaker, inspiring athlete and all around star! People who are very much ON the radar!
There are protocols to help your family with everything from thyroid function to congenital heart defects to cognitive ability should you choose them. There is education from Early Intervention through to college programs for your child. We are all learning as a community every day and it’s a great time to be a person with Down syndrome. Take it one day at a time, and let your child blossom. I promise they will.
In the meantime, be comforted by what you already know: Our babies are not scary. They are not broken, or less than, or substandard. They can do nothing with anyone’s pity or prejudice or patronizing or fear. But they can do everything with our encouragement, our support and our love.
We’ve been to the doctor three times in the past two weeks (once for Tristan, twice for Frankie). It’s become a bit routine. Get there, check in, chat with receptionist, wait to be seen, see doctor, come out, pack up, check out. This time it was pink eye for Miss F and as we were packing up and getting ready to go, another mom in the waiting room was smiling and engaging with her. She gushed over her and asked how old she was. I told her and we got to talking.
Her baby was 6 months. She was born prematurely, she said. She has hearing loss. Her voice cracked. Oh. Maybe she expected me to say I was sorry, I don’t know. Did you know? she asked me. About the Down syndrome? I asked. Um, well, yes, she said shyly.
It’s the fourth time someone has mentioned it without me first saying so. Usually my heart skips a beat. But this time…it didn’t. I felt a sort of kindred spirit. And that this mom needed me. I told her our story. Then it was her turn.
Her daughter didn’t have Down syndrome, but she confessed to me that they thought she might during her pregnancy. She said that she has hearing aids but needs a cochlear implant. She took it very hard and it’s taken her a long time to be okay about it. You want your baby to be perfect, you know, she said. I know, I nodded. But – she smiled hugely – she’s started to read lips, she moves her mouth when we talk to her! Then she looked shy again. Sometimes I swear she can hear me.
You’re her Mommy, I said. She knows what you’re saying. And she’s going to be awesome.
She smiled. Your’s too, she said.
The receptionist came back to check me and Frankie out and we were on our way. The mom and I said goodbye and I know I probably won’t see her again.
But I was left feeling so light, so happy and so…fortified. I hope it was the same for her. Because I think what we both confirmed to one another was that we all want our babies to be “perfect” – sometimes it just takes us a little bit longer to define perfect.
I’m just going to leave this right here…
We’ve just crossed the 1 year threshold and it’s almost entirely gone – the uncertainty, the fear and the sadness. In fact, there’s only one time that sadness comes back to knock the wind out of me and sting my eyes with tears – and it’s not when I think of my baby girl. It’s only when I think of myself. See, I don’t feel sorry for Frankie at all, or me, or Seb, or our family and friends. I only feel sorry for the “before” me – the me that didn’t know that she was about to have her world changed the instant she looked into her baby’s gorgeous kaleidoscopic sapphire eyes.
I guess I’ve never dealt well with my own naivete. Always embarrassed after the fact at the things I didn’t know, before I knew them. I think of myself planning for the baby I thought I was going to have. Trying not to act excited as I bought a new robe and PJs for the hospital. As I packed travel sized shampoos and toiletries for my stay. Trying to be nonchalant as I bought just one more gender neutral onesie – “It’s definitely a boy, but, you know, just in case…” In the aftermath of Frankie’s birth these things seemed so trivial and inconsequential and I felt like such a silly naive girl preoccupied with it all. I remember feeling angry, thinking to myself how could I have cared about that stuff? How did I think I was just going to walk in there and walk out with a perfectly fine, healthy baby.
And then there was the cringe-worthy “hopeful” phase – nervously googling, taking it to heart when the hospital pediatrician said “It’s probably nothing.” The me that thought “She can’t possibly have it, LOOK at her.” But those eyes were so telling…I knew. And I knew I knew.
And then finally there was acceptance. Maybe I’m not SO embarrassed by this final phase of me. But I still feel stabs in my heart when I think of myself handing my beautiful girl over to each new admirer and simultaneously blurting out “She has Down syndrome.” Each time was cathartic and freeing and met with the most sincere words of love and encouragement, but pierced right through me nonetheless.
There were weeks that followed when I repeatedly crumpled into my husband or my parents still hoping to wake up to find it all a dream. When I muffled my cries so my older son wouldn’t wonder what was wrong. Where I sat on the steps in my robe long after everyone had left for school or work for the day, ugly crying my way through nap time. When my baby girl’s face was wet with my own tears as I pledged to give her the very best in me with Natalie Merchant’s Wonder on repeat in the background.
Somewhere in there it all changed for me. I’ve come to accept that it was – it is! – a process and I try not to be too harsh on myself about the way I’ve dealt with it all. I am still sad for that woman who didn’t know the pain that she was about to encounter on the eve of an occasion when she expected nothing but joy. But now, I feel so lucky to be the woman who gets to experience such joy when she expected such pain.
I guess life is funny like that sometimes…
Today is the annual day of awareness for the Spread the Word to End the Word campaign. For the uninitiated, the R-word is “retarded” or “retard.”
You remember saying it without a second thought in the 80s and 90s, right? Me, too. And I will admit that even now, though it doesn’t slip out anymore, I’m not completely shattered if someone says it flippantly to describe something they think is stupid or uncool. But more and more, it makes me stop and take a deep breath. And if someone ever said it about Frankie…well, I’m afraid I’d have to get all mama bear on them.
But, here’s the thing, when someone uses it, it’s offensive to anyone with an intellectual disability. It belittles their achievements and their value as a person. Which isn’t nice.
So just don’t use it. Find another word, there are tons to choose from. It’s not going to save the world, but it’s one more step towards a kinder society. And that means a lot to a lot of people.
Strong. Independent. Smart. Sassy. Beautiful.
These were all things I imagined when I dreamt about having a little girl. A headstrong little miss with hands on hips and pouty lips. She would grow to be a woman who was savvy and intellectual with inner beauty and strength.
These were qualities and traits I valued before having a child with Down syndrome.
When Frankie was born and her diagnosis sunk in, all of those dreams of mine dissolved. In the darkest days I remember irrationally crying that she would never be pretty or smart, that I felt like all I could do was dress her up and make her look cute. That was all she could be. And I wanted so much more for her. My perfect daughter was gone in an instant.
How wrong I was!!!
You are 1 year old, baby girl!
You are so strong, you blow your physical therapist away at every session and she says you’re the best she’s ever seen.
You are so independent, you push my hands away at least 10 times every day, saying without words “I got this, Mom!”
You are so smart, you are constantly figuring out ways to do just what you want to even when your little body is not quite ready.
You are so sassy, I get a preview of the fights and struggles you and I are going to have when you’re a teenager every time you glare at me from across your highchair’s tray.
Almost every day we are approached by strangers – whether in the store or on the street or on the train. They smile, they coo, they literally gasp. I’ve heard “She’s beautiful.” “She’s perfect.” “Those eyes!” “A baby like that makes you forget there is bad in this world.” They say simply and yet with a sincerity that always catches my breath, “She made my day.” What could be more beautiful than that?
I am sorry I ever underestimated you, beautiful girl. I should’ve known better from that first day we met when you pulled my hair and checked out my diamond ring and I saw that glint in those sparkly, sapphire eyes. How could I ever doubt you would fulfill all my dreams? And more importantly, I can’t wait to watch you fulfill yours.
Happy 1st birthday, Francesca Catherine.
It’s taken me much longer than I thought to decide to write about our experiences with Frankie’s diagnosis of Down syndrome. It surprised me – writing is usually my go-to form of expression, but there was something about putting it all out there that kept stopping me. Ultimately, I think the reason was that I didn’t want my little girl to ever know that I felt anything but utter joy at her arrival. I knew it would take time to work through the fear and to unravel the tangle of emotions and I couldn’t bear the thought of her one day stumbling across my untempered thoughts.
But I realize now – at nearly a year in – that that’s not what this story is about. It’s not about overcoming hurdles and struggles. It’s a love story. One that started differently than I had expected, but has blossomed into something so much greater.
Our girl was not what we had expected and, at the time, that felt devastating. But I understand now that no child is ever what you truly expect or without his or her challenges. And truthfully, she’s so much more than I ever could have imagined!