Once upon a time, Katie Stewart had a vision for her future self. Hers would be a normal life – comprised of work and love and maybe even parenthood. Over the years – as a teenager and young adult, this vision would dim at times. Yet at others, it would snap into clear focus as a real-life possibility for her. For Katie, it all began with believing in herself and then doing what needed to be done.
Katie was born with spina bifida – a neural tube defect that typically occurs within the first four weeks of pregnancy – often so early, that a woman may not even realize she is pregnant. Considered to be a multi-faceted birth defect, spina bifida can vary in degrees of severity from individual to individual and is sometimes accompanied by hydrocephalus or fluid on the brain.
Katie’s early life was filled with surgeries – about six major ones. At six months of age, she underwent a critical operation on her spine that would determine not only if Katie would be able to walk (she can) but also the level of her quality of life going forward.
“One of my earliest memories is being in the hospital fighting off an infection,” says Katie. “I was probably three-and-a-half and I remember speaking with the nurse. This was my life at the time – coloured by a whirlwind of seemingly endless hospital visits. Not only for surgeries and corrective procedures but also to battle infections that spina bifida left me prone to.”
In Katie’s case, spina bifida resulted in severe mobility issues from her hips downward – affecting both her bladder and digestive system. Medically-speaking, her feet are considered non-functioning.
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As a child, Katie was fitted with leg braces to aid in walking. At the age of 15, due to severe scoliosis (a curvature of the spine) she underwent back surgery in order to fuse her spine. Once recovered, Katie felt better though her mobility was further reduced. She had to rely upon forearm crutches in addition to her leg braces in order to walk. Currently, Katie still uses crutches and leg braces as well as a wheelchair to remain mobile.
Health setbacks aside, Katie hit the jackpot in terms of the family she was born into. Her parents advocated relentlessly for her – as a baby, as a young child – before she found her own voice to continue her quest for acceptance – something all human beings have a god-given right to expect. She also has a brother she is very close to.
And because Katie’s family always treated her normally – this meant it wasn’t until she started attending school that she discovered what it meant to be disabled within society. Another harsh realization she soon made: just how strongly intertwined other’s perceptions figure into a person’s own self-identity.
Within Ontario, it was only in the early 1980s that people with disabilities had the right to be included within the general education system. Up until that time, schools had the option to exclude individuals with disabilities. Despite the fact that Katie started attending school well after this law came into effect, many staff were still not as kind and welcoming as they could have been. As they should have been.
“I remember an incident when I was in kindergarten that still haunts me today. I was newly returned to school after undergoing foot surgery. While on a field trip, a pin in my foot became dislodged. It was an accident that has since faded in my memory – but the way the school staff dealt with the situation has stayed with me – even after all this time,” says Katie. “I remained on the bus and eventually returned to school where I was left alone and isolated in a back office.
“I was a five-year-old child – left alone, bleeding. The school called my mother and told her that while it was by no means urgent, I had been injured and should be picked up. When my mother arrived at the school, she found me alone, blood all over the floor, suffering from shock. I had to be rushed to the hospital.
“It showed me how little my life was worth – in the minds of my teachers.”
Another time at school, her class was involved in a holiday pageant. Katie’s teacher felt it best for her to sit it out due to the fact she was in a wheelchair. Her parents insisted she be included and so a compromise was reached – Katie could take part so long as she was placed at the back of the stage. When her class filed out for their performance, Katie’s father physically lifted his daughter’s wheelchair onto the stage so that she could be a part of the show.
Many experiences Katie faced early on within her educational life were discriminatory to put it mildly. Unkind and unjust to put it bluntly. Self-described as shy and unassuming, Katie did not possess the vocabulary and awareness back then to verbalize the struggles she faced and how they made her feel. She does now.
Katie’s parents advocated tirelessly on their daughter’s behalf. They insisted she be included at school and be treated the same as any other child. Katie believes it was due to her parents’ unwavering support and encouragement that she was able to channel the negativity she faced and turn it into something positive – spinning gold from straw so to speak.
It was thanks to her family’s support as well as the instances of discrimination she faced at school that turned her onto the path toward becoming a teacher herself.
“I have a complicated relationship with education,” Katie admits. “Some of my early experiences were bleak. But this was an opportunity for me – to become part of the educational system and to do better than was done to me.”
And so Katie forged a path she had envisioned for herself. She excelled at school and went on to teacher’s college. Currently, she teaches high school theology for the Dufferin Peel Catholic School Board – where she’s been for the past 11 years.
With her profession well underway, Katie set her sights on something of a more personal nature. If true love was in her cards – she was going to do what it took to find it.
It was 2011 when Katie met Iain Stewart through an online dating site. Taking things slowly, the two messaged each other back and forth for a while before progressing to talking over the phone.
It was just before they planned on meeting for the first time that Katie informed Iain she walked with crutches. Although she didn’t get into her diagnosis or complete medical history at this point in time. They met at a nearby cafe – and according to Iain – he felt an immediate connection to her. Their conversation was easy and Katie was vibrant, crutches and all.
“Internet dating is a fantastic venue, especially for people with disabilities,” says Iain. “So many people, me included, are often quick to make snap judgements based on immediate perceptions. But with online dating, it gives an individual a true and fair chance to make an honest impression on someone else. It can be a level playing field for establishing a connection with another person.”
It was during their fourth date that Iain made the realization that Katie was much more than just another woman he had met online. It was at this juncture when he knew she was someone of substance – a person who was extremely important to him.
It was the 25th anniversary of Rick Hanson’s Man in Motion cross country tour and because Katie was a medal bearer, she and her family were attending the ceremony. Afterward, there was a party and Katie invited Iain to attend – which he did.
Iain recalls this event as the point of no return for him; when he realized who Katie truly was; when he saw her unshakable strength and beautiful spirit. And when he knew he did not want to let go of her.
Two years later, Iain proposed.
“It wasn’t even a decision to me,” Katie says. “When I thought about my future, Iain was a part of it. And I just couldn’t imagine my life without him in it.”
The newlyweds moved into a home close to both Katie’s and Iain’s families as well as Katie’s school. The layout worked well for their situation – the house had a big, open kitchen making it easy for Katie to get around in her wheelchair. They also spent time as well as precious financial resources in further outfitting it for their needs – a chairlift was installed to the second floor and they also put in an accessible bathtub.
Between the two of them, there was talk about maybe, possibly starting a family. But before a baby could even be a consideration as a part of Katie and Iain’s future plans, there was a lot of prep work to be done. While the road toward pregnancy and eventually parenthood is rarely a simple and direct path for anybody – it proved to be infinitely more complicated where Katie and Iain were concerned.
Firstly, Katie had to find out if getting pregnant and sustaining a pregnancy were even physically possible for her. If so, she would need to look into what services and resources would be available to help her during pregnancy and afterward.
It seemed simple enough – but it wasn’t.
When Katie contacted the Spina Bifida Association about putting her in contact with other women who had successfully given birth – they could only offer up one woman for her to speak with. And her child was 12 years old.
In fact, staff at the Mount Sinai High Risk Pregnancy Clinic (which Katie would attend) informed her that in 32 years, they had only ever dealt with seven or eight pregnant women with spina bifida. And none of these women’s cases were the same as Katie’s. Which meant that going forward, Katie was basically a pioneer forging her own path – without anyone’s pregnant footsteps to follow in.
“While there are many services and resources to help me and others with disabilities in terms of self-care and day-to-day aspects of life, there are very few designed to help new parents with disabilities,” says Katie. “This is yet another example of how people with disabilities fall through the cracks. So many people who will never live up to their full potential or who mistakenly believe they are undeserving or unable to ever reap the joy and rewards that come with becoming a parent.”
The next year of their lives was spent undergoing fertility tests, visiting the Mount Sinai High Risk Pregnancy Clinic as well as submitting to genetic counselling. (Individuals affected by spina bifida are at a one to two percent increase of conceiving a child similarly afflicted.)
Katie also had to meet with drug counsellors. She needed to determine which of her medicines would be deemed unsafe during pregnancy and if and how she could stop taking them. Then there was the matter of Katie finding alternative ways to deal with her chronic pain and her conditions that required the medication in the first place.
Not to mention, Katie and Iain had to discuss the reality of being able to handle a newborn, infant, toddler – with her disability. This happened to be an area where Katie and Iain are blessed – they both have supportive family in their lives – willing to step in and help where required.
And so, after the numerous discussions with health care professionals and weighing all the odds in their favour and against them, Katie and Iain decided to take the plunge – and see where it would take them. Due to the possibility of heartbreaking disappointment, they decided to keep much of this secret from their family and friends.
“I knew that deep down my parents would delight in becoming grandparents,” says Katie. “But I also knew they’d never admit as much just in case it didn’t happen for me – for them. With everything else going on, my parents would never want to add this unspoken pressure to my life.”
As it turns out, all their planning and preparation paid off – they got pregnant!
And like in most other areas of her life, Katie strived to do whatever was in her power to thrive during pregnancy – not merely survive. She continued with her work-outs, her routine physiotherapy and stuck to her strict diet. And as luck would have it – her chronic pain diminished during her pregnancy – a godsend considering many of her pain management medications were a no-no with a bun in the oven.
Smooth sailing was short lived however.
Six weeks into the pregnancy, the first set of complications reared its ugly head. Katie began experiencing severe difficulties with her typically normal process of self-catheterization. In her search for assistance, she was bounced from clinic to clinic. Finally, Katie put aside her self-described gentle and unassertive nature and turned fierce mother warrior – fighting to get admitted into the high-risk pregnancy clinic early so that she could carry out the remainder of her pregnancy under strict monitoring.
“From the beginning of my pregnancy onward, I had to do a lot of self-advocating as well as problem-solving – oftentimes coming up short,” says Katie. “But I made it – and I even managed to stop and enjoy myself from time to time.”
Then they hit another bump in the road – doctors warned of the possibility that Katie would be unable to carry a baby to full-term. The lofty hope was for her to reach 28 weeks gestation. Katie and Iain worked through this concern by setting mini-goals for themselves – basically taking the pregnancy week by week. Through it all, Katie’s faith helped provide her with comfort and allowed her to make the best out of what really was a scary and unfamiliar journey.
On August 11th at 3:48 pm, Joy Kennedy Stewart was born by C-section. She was just shy of reaching the 37 week gestation mark.
Like all new parents, Katie and Iain had planned for their baby’s arrival as much as possible. They prepared a main floor nursery complete with modified crib so that Katie could easily open it as well as roll her wheelchair beneath it in order to get Joy in and out.
They also prepared for the many challenges they knew to expect. For instance, due in part to osteoporosis, Katie would be unable to be as hands-on as she would prefer. But they made it work. While Katie could not get onto the floor to play with Joy, she could play with her on the bed or couch or when she’s in her crib. And despite being physically limited in holding the baby in an outward embrace or picking her up off the floor, there was nothing stopping them from snuggling together with Joy on Katie’s lap.
For the first couple of months, Katie found it challenging to navigate life with an infant while being in a wheelchair. But slowly, she discovered solutions and when necessary, relied on her amazing support network so that she could be the mom that Joy needed and that Katie herself desired to be.
As time passed and Joy became older and stronger, it became easier for Katie to be more independent with her. Katie found ways to overcome the barriers that presented themselves – simply by training Joy in specific areas. For example, when removing Joy from her high chair, Katie taught her to lean forward and wrap her arms around Katie’s neck while stepping onto her lap.
“I do all the same things that any mother does for her child,” says Katie. “I may have to do things a little differently, it may take me a bit longer and there are times when I need support – but we always find a way.”
Looking back on her life from her current stand-point, Katie can see the value in her unique perspective. Yet for much of her life, Katie rarely shared her thoughts. Though she had a lot to say, she seldom said it. She realized that she could make a difference with her voice – which is what she’s doing now. She’s embracing herself, challenges and differences included- and she’s using her voice to share her story.
“I want the world to know that I have an amazing life,” says Katie. “I have a beautiful home, a rewarding job, a husband I adore – and a daughter. It sometimes seems nothing short of a miracle.
“But all these wonderful things in my life by no means just magically appeared. They have all occurred due to the choices I made and the paths I took, the barriers I have broken as well as the tremendous effort and investment I have placed within my life. But there’s still so much more to be done.”
She hopes that one day – a life like hers complete with rewarding job and loving family – is expected, easily attained and doesn’t stand out. That it’s not considered extraordinary or remarkable in the least.
That’s it’s perfectly normal.
For Katie and Iain Stewart, their love story has undergone highs and lows, it’s been a journey comprised of debilitating challenges, breaking down barriers and hard-fought successes. It’s been a road well-planned and thought out, motivated by hope and happiness.
Theirs is a remarkable love story . . . with Joy at its very centre.
What a beautiful article on an incredible person! I have known Katie for many years…..I taught her swimming ,diving and even some synchronized swimming, which resulted in her participating in a regional synchro show. She was such an inspiration to all who watched! Katie has such great perseverance and enthusiasm toward life. Joy is one lucky little person, to have Katie as a mom!
Tanya,
Thank you for chronicling the life of my friend, Katie. She has been an example to me (as a colleague),
and more importantly, to her students that life can be a miraculous journey if we always think positively and act lovingly. Her strength is unconventional (yet so powerful) and teaches all of us to look within ourselves to overcome any obstacle that society may put in our paths. Well done you for shining a light on a true woman of steel.
Lilia
Such a beautiful story of hope and determination! Thank you so much for sharing!
perseverance and courage put into words in this powerful story.
Love this story Tanya! What a brave woman.
Beautiful post and story! You captured her very well!