Emily’s life of challenges and joy
Calgary photographer Christina Ryan talks about the joys and challenges of raising a child with special needs. Watch her video project at edmontonjournal.com.
CHRISTINA RYAN AS TOLD TO DOUG HINTZ
CA LG ARY It is the simple things I treasure most about my daughter.
The hugs that I know one day she won’t be able to give anymore.
The time when she was eight — the only time — that she said my name: “Mom.”
The confirmation from a nurse that her heart rate actually slowed as a result of me holding her close during one of our numerous hospital visits. It is the closest thing to “I love you” that I will ever receive.
My daughter’s name is Emily and she has Trisomy 21, an extra chromosome that causes Down syndrome.
Combined with a separate, underlying neurological condition, it means our lives have often been challenging.
Emily does not talk, walk or feed herself, and suffers from epilepsy, severe sleep apnea, low bone density and muscle tone, and hearing loss.
She has endured numerous surgeries and thousands of doctor visits — so many that her medical files cannot be contained on a single cart. And there are many more to come.
But these are not the things that define her. She defines herself by the friends she surrounds herself with, by living life to the fullest and sharing the beauty she sees everyday with others.
She teaches me patience, and I am always amazed how a child that cannot communicate with words can portray herself as sassy and strong, with a wicked sense of humour.
She is not different, any more so than every child is unique in their own way. My child has the same feelings, the same hurts, the same pains, the same desires and happiness. She can be as frustrating and stubborn as any teenager, but her boundless love has always made every struggle worthwhile.
And I don’t consider our lives remarkable. Our normal is what we live with every day, just as every family has their own version of normal.
Like any parent, I committed to celebrating her triumphs and sharing in her battles. As I wage a near-constant fight for equality and fairness for my daughter, I ask for nothing more than the opportunity for her to enjoy the same opportunities as any other child — a good education, access to social and physical activities, and simple acceptance as the person she is.
She is just Emily — a teenager, a sister, a daughter, a friend and an amazing girl. I was seven months pregnant when I first got the news that all was not right with my unborn child.
At a time when many expectant parents are looking at ultrasounds, squinting to see the heartbeat or gender of their baby, I was sitting in a room at the Alberta Children’s Hospital with a group of doctors, sharing an intimate look at my baby’s genetic makeup that showed an extra chromosome on her 21st gene.
I didn’t yet have a name for her, but I was faced with the reality that my little girl’s future would not be what I had envisioned.
I spent the next month and a half poring over books to arm myself with as much information as I could, to know what mental and physical symptoms to look for: Low muscle tone, developmental delays, heart defects, vision problems, hearing loss, twisted or misshapen intestines, hypothyroidism and leukemia, and an increased susceptibility to infections.
Oddly, the one potential sideeffect that stuck out to me was thin or scarce hair. I hoped that my daughter would defy the odds and have nice hair.
I guess God was listening that day. Emily has wicked hair.
When she was born — like her elder sister she arrived on her due date — I searched for all the signs of medical complications. But all I saw were 10 perfect fingers and toes on my beautiful baby girl.
As she grew, she began learning her first words, to crawl and to feed herself Cheerios.
But the neurological condition slowly began to rob her of those early strides.
I have come to accept that Emily is never going to get a job, learn to drive, have children of her own or know the companionship of a significant other.
Now, I worry about the day her deteriorating condition robs her of the ability to eat or drink, and even the ability to breathe on her own. The future is uncertain, so the present is all the more precious.
Every parent faces challenges while raising their children, but some are unique to parents of special-needs kids.
Looking back, I would have loved for someone to say “congratulations” when Emily was born. Instead, my friends were silent and a family member wished for a cure.
I joined a support group, but I found that too many of the other parents wanted to mourn for their child. I wanted to live with mine and give her the best life I could — one filled with love, friends, challenges, rewards and acceptance. There are so many obstacles.
We are still forced to endure stares from those unenlightened few who fail to understand the harm they are doing. Emily is acutely aware when she is being stared at and, like anyone, it makes her uncomfortable. Beyond just being generally rude, it robs her of the self confidence that is such a beautiful part of her personality. She makes friends easily, and neither she nor I are particularly shy. We’d love to meet you.
There are other, practical things, like finding a daycare that will accept her. As many parents can attest, it is di cult enough to find a place you trust with your child, but I think I was turned down by every daycare in Calgary except for one.
As she was growing up, I learned to avoid places with jungle gyms. It was heartbreaking to see her lift her legs with her hands to show me she wanted to run and participate with other kids.
But there are also the joys of discovering the things she can do.
Emily takes great pride from such challenges as reaching out her arm to put on her jacket, turning o a light switch, strumming a guitar, singing along to music and taking assisted walking steps. Feeling the wind in her hair while racing down a snow-covered hill on a toboggan. Laughing. Loving.
As with any challenge, the key is what you do to overcome.
Of course, sometimes I cry. At times they are tears of pain, a silent pleading that nothing else be taken from a little person who has already had so much taken away from her.
But more often they are tears of joy, for the beautiful girl my daughter has grown into, all the things she has achieved, the opportunities to reach her potential and the joy she brings to those around her.
I was elated when she was accepted to Emily Follensbee School for Grade 1, a school dedicated to meeting the needs of society’s most medically fragile children.
The school’s sta have a capacity for love that I have never before seen, allowing Emily to be herself, to become fully her own person and to feel challenged and, most of all, accepted.
If that school was representative of society, what an amazing world we would be in — all inclusive, no separation, just acceptance.
She is now in the TASC program at Central Memorial High School, a special-education class that allows for integration with mainstream students.
For her 16th birthday this year, two girls from the school came to celebrate, the first “normal” friends to share in her party.
And, over the years, we discovered that there exist a number of exceptional programs in Calgary dedicated to enhancing the lives of special-needs children.
JB Music’s program inspires her to sing, and we now do little duets together.
Whispering Equine gives her the opportunity to interact with horses, laughing while touching and feeding the animals that are drawn specifically to her.
Without these options, I and many other parents never would have known the children we know. We wouldn’t have discovered these special things about our children that make them so exceptional.
My hope is that one day, everyone will embrace that ideal as normal.