Down Syndrome Diagnosis
“My daughter Francesca was born on a blustery February night six years ago. When she was placed in my arms, I looked down into her eyes. They were alert and startlingly beautiful – the shape was so unique and the streaks of light within their deep blue was kaleidoscopic.
They literally took my breath away. I knew in that instant my baby had Down syndrome.
The fear and sadness took hold right away. Everything I thought I knew about Down syndrome bore down on me, the pressure almost unbearable. All I could see were delays, both physical and intellectual, exclusion, dependency, slowness, failure.
All of my hopes and dreams for the fiercely independent woman I was sure my daughter would grow up to be were crushed.
We pleaded with the hospital to let us leave the day after Frankie’s birth. I didn’t understand the scope of health challenges we could’ve been facing and selfishly, I just wanted to get out of there, to run away from the place that was the setting of the most difficult day of my life thus far.
I wanted to be alone to grieve for the little girl who would never be. But I also had an agenda.
We were finally on our feet after an international move from London back to my home in New York, and after a year-long ‘visit’ with my parents, we were itching to move into the little house we had just rented right outside of the city.
We had struggled with infertility for more than two years and the baby’s birth was meant to be the culmination of all of my planning – she was meant to complete our family; she was the proverbial cherry on top.
I was eager to move on, get my then-5-year-old son started at his new school, to set up our new house, and to start living.
Admittedly, my schedule was tight. Frankie had been due at the beginning of the February school break. It was my plan to have her and move within the week so Tristan could start his new kindergarten class when everyone was returning from vacation to ease his transition.
And it actually was what happened – Frankie was born in the literal middle of the night before her due date. We were released on Tuesday and by Thursday we packed up the U-Haul and I followed behind in our little Corolla with Tristan and a barely 6-pound bundle of mystery strapped into a car seat.
However, her diagnosis was not part of my plan.
Special Needs Parenting
Once my husband and son were settled into their new schedules of work and school, it suddenly became clear I had a steep learning curve ahead of me – one filled with endless doctor’s appointments, therapies and learning to parent a baby I still wasn’t sure how to properly care for just yet.
When I was alone, I crumpled on the stairs, still in my robe, ugly-crying through nap time, overwhelmed by what I thought was the sheer unfairness of life. My parents came to visit. ‘I can’t do this!’ I told my mother. ‘You can. We will. You have to do this,’ she told me.
In a new house with no friends, no cable, and no idea what I was doing, I spent days staring out of the frosty window trying to breastfeed a baby with low muscle tone while melancholy Minecraft music droned on in the background, courtesy of Tristan.
Soon enough, in spite of my self-pity, we were hitting our stride. Frankie was an incredibly sweet baby, and to my surprise, she was smashing milestones left and right. As the harsh winter receded and spring’s warmth crept in, so too did a sense of optimism that could only come from a growing bond and an all-consuming love.
I thought I knew what a baby with Down syndrome would be like, but she was teaching me I had gotten it all wrong. She was stealing my heart every day and by the summer it was time to throw open the windows, both figuratively and literally.
It was one such June day when we really began to turn that corner.
In hindsight, my sweet son had weathered so much while I was occupied with his sister – new home, new school, new baby. It shouldn’t have surprised me that when he heard the voices of other children through our open window, he made a beeline for the backdoor, nearly bursting through the screen. ‘Mom!! There’s kids!!!’
I ran after him, collecting what I needed for the baby as I went and out in the alley that our house backed on to. We were greeted by another family with boys roughly Tristan’s age and a soccer ball.
Tristan wasted no time getting stuck into their game, but I hung back, Frankie in my arms, trying to imagine how she would fit in. One day would she run out the back door, racing toward the prospect of fun and friendship. Would she find it as easily as Tristan could?
I had a hard time picturing it, but as the summer wore on, more and more families joined us and before long, the ‘Alley Gang’ of about 10 boys was christened.
Finding Inclusive Community
I’m not sure when I revealed Frankie’s diagnosis to our neighbors. I remember the tentative feelings every time I had to tell someone new. Could they tell? Did they know, just waiting for me say it? What would they think? Maybe I never even did tell them. I know I never told any of the boys.
As they’ve all grown (they now range in age from 5 to 13) and her differences have become more apparent, I’m sure they’ve noticed. But you know what? Despite all of my fears, it has never even mattered.
Even though she is (almost) the youngest and she’s the only girl for miles, she has folded seamlessly into the fray. There have been beach days, barbecues, holiday parties, birthday parties, Halloweens and camping trips
She is always in their midst and keeps up pretty well. Always up for an adventure, she is mischievous with a silly sense of humor and an endless supply of energy. I joke that she doesn’t know she’s not a 10-year-old boy.
Do they get frustrated with her when she gives away their hiding spot in Manhunt? Absolutely! But more often than not, they are cheering her on, asking her for hugs or high fives and telling me about a funny thing she did when they saw her in school.
And for her part, she beams when she sees any one of them, grabbing their hands and dragging them into our house to show them every little thing. She craves their attention and delights in being included in their play.
I think back to my state of mind when she was first born – to the hollow stereotypes and dismal prophesies about her future I let consume me. How unfounded they were! Yes, we deal with therapies and speech delays and difficulty in school, but we have a network of support that has literally grown up around her like a 10-foot fence.
She has a safe place to be ‘one of the kids’ without prejudice or cruelty, provided by the unlikeliest of motley crews!
These boys would do anything for her and I like to think she keeps them openhearted, reminding them that different does not mean incapable and kindness and inclusion matter, lessons they will carry with them for all of their lives.
She is little sister to all of them and they treat her with the same affection as if they were actually related. So, if you can, get yourself a horde of boys who love you like this.”
This story was submitted to Love What Matters by Farah Lyner of Forest Hills, NYC. You can follow their journey on Instagram and Facebook. Be sure to subscribe to our free email newsletter for our best stories.
Read more stories about Down syndrome:
‘Linda, I have news—please sit down.’ The delivery room was hush-hush. ‘She will be a burden to your family.’ Everyone was disgusted I wouldn’t abort her.’: Mom details emotional journey advocating for daughter with Down syndrome
‘Today my little sister received her school yearbook. She was intentionally left out due to her differences in ability.’: Sister to student with Down syndrome advocates for inclusion, ‘There is no excuse’
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