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My daughter has Down syndrome and I wouldn’t change a thing

After receiving a terrifying diagnosis, Tara McCallan grieved all the dreams she had for her child. Now she can’t imagine life any other way.

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If the number of mother-and-daughter cards found in the stationery aisle is any indication, there’s something really special about having a daughter. I realize now I didn’t even know I wanted that relationship, but I was devastated when I thought it was taken away from me. Now, I’m immensely changed because of it.

I found out I was pregnant again when my little boy, Noal, was only seven months old. The idea of another newborn, endless sleepless nights, more spit-up and poop when I was already knee-deep in it, and saying goodbye to my perfect B cups after nursing two babies back-to-back, was overwhelming. And then, when I was 20 weeks along, I found out I was having a girl.

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I left the ultrasound stunned, wondering what life with a daughter would be like. I started to notice tween girls in clothes too short and tight. At a visit to a friend’s house, I managed to catch the tail end of a preadolescent screaming match with her 10-year-old daughter. Add to that the notion of parenting a girl anything like I was as a teenager, and I was terrified to imagine what I was in for.

But when I bought her first pair of Mary Janes, before she was even born—tiny, pearly white shoes with little daisies—I decided to put my fears aside and embrace just how extraordinary the experience was going to be. I started to think about all the things I wanted to teach her, and about how—just like with her brother—I could mould her into a beautiful, open-minded and generous person. I wondered what she would look like, if she would have my eyes (which happen to be my husband Craig’s favourite feature of mine), or white-blond hair like Noal. I imagined my children having a close relationship, especially because they’d only be 16 months apart. And the thought of my husband with her automatically conjured up scenarios in which she sided with him and was a total Daddy’s girl. I dreamed that she loved books like me, was a tomboy, kept up with her big brother and loved father-daughter dances at school. I hoped that she’d be funny, warm, independent and confident, but more than that, she’d be happy and grateful in life.

If someone had asked me, before either of my babies were born, what my wishes were for my children, I’d have said I wanted more than anything for them to have happy souls. And in a way, everything I wished for in my daughter has come true. Just maybe not as I imagined.

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Fate is funny that way. It lets you daydream a life—the challenge of having two kids younger than two, a daughter you envision raising to be an exceptional woman—only to smash those plans to pieces. But in my case, it allowed me to build something much more beautiful.

Three days after my daughter, Reid Layne McCallan (now affectionately known as Pip, shortened from Pipsqueak), was born, I found out she had Down syndrome.

After Pip’s birth, at first glance, everything seemed perfect. A good friend was taking care of Noal and supplying a steady stream of picture updates so I wouldn’t worry. Pip scored well on the Apgar test, latched perfectly and seemed like a content little thing. Craig was supportive and sensitive, telling me how strong I was and how happy he was with our little family. For two days I lived in this euphoric bubble, until it came crashing down, nearly taking me with it in shock, sadness and fear.

The day Pip and I were released from the hospital, a paediatric heart specialist came to listen to a murmur a nurse had identified in Pip’s heart a few hours before. The doctor looked at me with the saddest eyes—eyes full of such pity I can still feel his sorrow when I think back to his words: “I’m sorry to be the one to tell you this, but I see signs of Down syndrome in your daughter.” It took my breath away. I felt like he had slapped me across the face.

Alone in the hospital waiting for Craig, and a genetics specialist to confirm the doctor’s hunch, I remember feeling like I had never felt before. I was utterly gutted. I just kept looking at Pip and begging a higher power to intervene, to prove the doctors wrong. It hurts to think that in those early days after the diagnosis, Pip saw me folded over, weeping with such devastation, believing that everything I dreamed for my daughter was gone.

Now, here we are, a little more than a year later, with so much behind us: numerous eye and heart surgeries; months of a rigorous nursing schedule; feeding tubes keeping Pip alive when she was in heart failure; days upon days of doctor appointments, therapies, tests and blood work; insanely tiny contact lenses and outrageously cute baby eyeglasses. And I can honestly write that I have the daughter I hoped for and dreamed about.

Pip doesn’t have my green eyes or her brother’s hair. She has these unique, almond-shaped blue stunners that draw you in, coupled with ridiculous brown hair that only seems to grow on the very top of her head. Pip has the most contagious smile I’ve ever seen, and her laugh starts in her toes before taking over her entire body. She has a relationship with her brother that warms my heart; I know she is here to make him a sweeter boy than I ever could. Her dad is fiercely protective, and he tears up with pride and love as he watches her achieve milestones and survive surgeries. As for me—Pip has made me a stronger person, a better mama and a tireless advocate for something I didn’t even know needed defending.

Pip is everything I need in a daughter, and my aspirations for her haven’t changed. I wanted a daughter with a kind heart and grateful spirit, and she has that in spades.

Now I have a daughter that is bigger than any daydream. I have a daughter who moves mountains, breaks down stigmas and gives hope to the unnecessarily negative Down syndrome diagnosis. I have a daughter I couldn’t dream up, because I didn’t know what fate had planned: a daughter who colours our lives so beautifully, outside the lines.

To read more about Pip, visit Tara’s blog, Happy Soul Project.

A version of this article appeared in our August 2014 issue, with the headline “My daughter has Down syndrome and I wouldn’t change a thing” (page 55).