Meet Rebecca

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Rebecca is sunshine and perseverance.  

Born almost three weeks overdue to 26 hours of induced hard labour, I watched as she turned blue, and bluer, and darker still. Not breathing. No crying. Now purple. Still not breathing.  Doctor and nurse take her to a side table, their backs now to me and her Mom.  Can’t see her, can’t hear her. Still not breathing.  No crying.  Eternity.

They rush Rebecca out of the room just as my wife asks me what’s wrong, where is she? Where’s our baby?  While reassuring her, I’m screaming in my head please, please God, just let her breathe.  The longest minute of my life.

And then we heard it. From the hallway outside, that glorious first cry. The incredible sound of life.  She was breathing. She’ll be OK. She will persevere.

To this day, the sound of a baby crying is a warm and fuzzy for us.

They brought her back to us a few minutes later, now all bundled and beautiful and crying louder and louder with every breath. Mom finally got to hold her baby, but not for long.

Suddenly, nurse takes her from Mom, hands her to me and says “Come with me.”  In a heartbeat I’m seated in the middle of the empty hallway outside the birthing room, with its door open, watching the medical team working feverishly on my wife. I’m watching her bleed out. Watching her loose consciousness. Watching as they wheeled her down the hall to a different room while one nurse ran to the phone and dialed. The only word I heard her say was ‘stat’.

A minute later the hallway doors behind me burst open, and a man still pulling on his scrubs runs by me at full speed.  I sat in that hallway rocking with Rebecca and listening to her exercise her lungs while I prayed for my wife’s life for almost an hour before the surgeon finally emerged. The longest hour of my life.

“She’ll be OK, I’m glad I was here” he said, and left.

And so began our incredible journey with Rebecca. Sometimes you have to stop and marvel at where the journey has taken you and the amazing people you’ve met.

 A journey with highs and lows, joys and sorrows to the extreme. She scared us half to death the first night she slept through the night at just over a month old. We had to wake her up in the mornings after that. When she opened her eyes and saw you, her smile lit the room and melted your heart. Joy seemed to pour out of her. She was a very happy baby, rarely upset. She was sunshine.

Then we started to notice. We noticed that the so-called ‘milestones’ that parents look for came and went without successes. As she grew, so did her frustration. So did her self-abuse as a result. She would bang her head on the floor if she wasn’t understood.  We could see that she understood, she just couldn’t express herself.  She could think it, she just couldn’t say it.  We learned to anticipate, to understand, and to distract. Teaching her a little sign language – more, drink, food - helped her communicate and quell some of her frustrations. That in turn led to teach her to point to show us what she wanted, which helped even more. Who knew pointing could change things so much?

But we were only beginning to understand the challenges that lay ahead.

Soon came doctors and specialists and paediatricians – she may never talk, she may never walk.

Why is she like this? Why did this happen? Why, why, why?

Then interventionists, physiotherapy and behaviour management. Then a team of specialists at Sick Kid’s Hospital. Many days one doctor after another, one test after another. At the end of one key day we met with all of them. They called it ‘Global Developmental Delay.’ Just what did that mean? Can we treat it? Will she recover and be ‘normal’?

“We don’t know” became the standard.

We soon chose to leave all that behind. The only questions we had they couldn’t answer. Why didn’t matter anymore. What only mattered now was how. How do we give her the best life possible ? How will she learn ? How do we teach her ?

She started proving them all wrong when her Grandma taught her to sound out the alphabet when she was about 2 1/2. She couldn’t say the letter, but she could make the sound. ‘X’ was the only hard one, so she would blow a kiss instead. A few short words started not long afterward, and by the time she was 4 came her first sentence – “Go Leafs Go!” (that’s my girl!) At almost 5 years old she took her first unaided steps.

She started Pre-kindergarten when she was 4, and we were extremely lucky to find a school that cared, that were adaptable and accommodating. They welcomed her with open arms. Her first day there, I sat on the floor with the rest of the kids and asked them if they had any questions.

“why doesn’t she talk?”   “why can’t she walk?”  “why does she wear those things on her legs?”       “does she like us ?”

After answering their questions as best I could (I was new to talking with little kids), the reaction from them was “Oh,.. OK, can we take her to play with us now?”

She went all through school with those same kids, and when Grade 8 graduation came and her name was called, they gave her a standing ovation and hollered and cheered for her. She was their sunshine too.

High school introduced us to special education and the’ Buddy program’  where senior students would spend part of their day mentoring and caring for special ed students, and another group of really caring people who loved her for not only who she was, but who she could be.

When Rebecca turned 21 and high school was no longer an option, we got more involved with Community Living which was terrific, but it wasn’t enough. She grew quieter and more introverted. She needed purpose and stimulation. She needed more. We had to do better. York Support Services told us about an opening at The Centre for Dreams.

Our first meeting with Michelle was a breath of fresh air. Our questions and concerns that were previously met with “I don’t know” and “We’ll have to see” or “No we can’t” were now being answered with “We already do that” and “Yes we can.” When we broached the subject of Rebecca’s incontinence, an issue that has plagued her most of her life (She even shut down the ladies room at Dave & Busters one night) the reply was “send spare clothes and a towel, we have a shower here.”

Really? Are you sure? Really?

Wow. We sobbed the whole way home. Finally.

Dreams is a game changer. They plugged her in and lit her up. She’s engaged and involved. She learns and thrives.  She came home from Dreams her first week just bursting, we have never heard her talk so much and with so much joy. We’ve never seen her smile so big, except maybe for the time she met Mickey Mouse…

You often hear Michelle and her team refer to all of us as “The Dreams Family” and that is exactly what they are. They are our heroes and we consider ourselves blessed to be part of this family.

“It takes a village” and this is our village, and these are our people.

What we have now come to realize is that we were never meant to be the teacher. Rebecca is the teacher, and has taught us more about what is really truly important.  We are the lucky ones.

Today, Rebecca is a happy, healthy 30something, who’s smile still lights up a room. Her sweet quiet demeanor only changes when friends & family come to visit. She loves company, and always delights visitors by welcoming them with a warm ‘welcome to my house’ and ‘I’m so happy you’re here’, and big hugs.

Sometimes more of an observer over participant, she loves watching others have fun, and is just as happy to watch quietly from the sidelines with all her stuff. She always has her stuff. A deck of cards, a handful of her 12,348 markers, pencils and crayons, all wrapped up in a magazine or newspaper, bound with 27 elastic bands. Don’t touch her stuff.

She grows as a person every day, and continues to surprise us with what she knows and what she is capable of.

 

She continues to shine.