Believe

When Ava was first diagnosed with Rett syndrome at 22 months, I had a lot of preconceived ideas about what she was going to be like. In the months leading up to the diagnosis, I had spent a lot of time conferring with Dr. Google who informed me over and over again about all of the things girls with Rett can’t do. They can’t talk. They can’t walk. They can’t play. They can’t use their hands. They can’t learn.

It really did a number on me and when she was finally diagnosed, it was a huge blow. To be clear though, the blow was not to her. As my husband and my parents kept telling me “Ava is still Ava.” Rather, the blow was to me and to my expectations of what her life (and mine) would be like.

Interestingly enough, immediately after that appointment with the neurologist we had an appointment with her amazing physiotherapist, Simona DeMarchi. As soon as we walked in, I blurted out that Ava had Rett and broke down in tears. She gave me a long, emotional hug and said: “Now we know and we’re going to keep working.” And that was that. She didn’t suddenly change her approach or make the exercises easier. She kept on expecting Ava to rise to the challenge. And rise to the challenge she has.

In and around the same time, I came across this video of another little girl with Rett, Cammy Can, using a Tobii to communicate and I was floored.

This was in stark contrast to the image I had conjured up when I read descriptions of Rett. My husband and I agreed that if there was the slightest chance Ava would be capable of communicating, we were going to make sure we gave her every opportunity to succeed. As a teacher and someone who speaks three languages, I was hell bent on getting her started as early as possible. We researched and figured out that we could bypass the stress of waiting to be approved for a device by purchasing the Tobii PCEyeGo.

We took a road trip to Chicago to see Susan Norwell, and it was life altering- not only for Ava but for me as well.  At first, Ava was not too happy about the Tobii, but eventually she calmed down and started making selections. Then an amazing thing happened. Susan had a conversation with Ava. I remember saying to Susan, “surely she’s not intentionally selecting these buttons- she’s never used symbols, let alone these ones.” And Susan very firmly (and almost irately!) said: “Well how do you know she doesn’t mean what she’s saying? She can see the pictures and she’s smart!” From the moment Susan met Ava, she believed in her abilities. She expected her to communicate using the Tobii. And communicate she has.

 

It took one final group to kick me into high gear. I was lucky enough to virtually bump into Eryn online. We had both posted questions about the PCEyeGo in an online group, so I sent her a private message. Turns out she was also Canadian and worked closely with a 16 year old girl with Rett. We became facebook friends and shortly after, she posted something that changed my entire way of thinking:

“For all of you who have been asking how Jo has been doing with her new eye gaze communication device. Here’s the conversation Jo had with her mom this afternoon;

Jo: “I love you mom” “How’s it going?”
Simone <Jo’s mom> “I love you too Jo. I’m pretty good thanks, how about you?”
Jo: “My servant woke me up early again. I really think we should consider firing her!”

Well that pretty much sums it up. ROFL”

My jaw dropped reading this. Here was a girl with Rett clearly communicating more than just needs. I immediately stalked, I mean sent a friend request to her and to her mother, and a wonderful friendship has since ensued. Jo is incredibly smart, is a talented writer and is very well spoken. She advocates on a city youth council for underprivileged, underserved, and undervalued youth in society. She has great taste in music, enjoys skiing, and loves bobsledding (both for the sport and for the eye candy.) She has a wicked sense of humour. She is quite simply the most amazing 16 year old girl I have ever met, Rett Syndrome or not. I would like for both of my girls to aspire to be like her. (Well, maybe minus the potty mouth!)

I asked her mom how she did it. And her reply was simple- If you don’t believe in your kid, no one else will.

Those words have since become my mantra. And how true they are. I believe in Ava, and I expect her to work as hard as she can.

I am amazed by all she has accomplished in the 8 months since receiving her diagnosis. I’m not going to lie- it’s not all rainbows and unicorns. Rett Syndrome sucks. Sucks. I still have days where I am incredibly sad and angry, and would rather not get out of bed in the mornings. But those days are becoming fewer and farther in between. I’m trying my best to work as hard as I can to help Ava so that she CAN do all of the things her older sister does like talk (on her Tobii or with her eyes), walk (with some assistance), play (with a little help), and learn (with accommodations). Because she expects it.

Believe

Believe

13 thoughts on “Believe

  1. Simona DeMarchi says:

    Jen, thank you for entrusting me to be a part of Ava’s life. As Susan said. it’s an honor. We all believe in Ava, and in you as well!

  2. Marlene Kenley says:

    You are amazing from the first day we met I knew you would turn into a momma warrior! RETT SUCKS! it really has so many downs but the joys of our girls accomplishments are impossible to describe Ava is so lucky to have you as her mom with all that support God only knows what she will do! Thank you for becoming an amazing advocate for all our girls.

    1. jen says:

      Marlene- thanks for your kind words! You are an amazing mom and an inspiration to us! I still love watching that video you sent me of R. walking for the first time 🙂 xoxo

  3. Bree says:

    You continue to be an inspiration to us all. The whole Ava team (professionals, family) is an example what can be accomplished through hard work and perseverance. Go Jen and Ava!

    1. jen says:

      Thanks, Bree! You have been there for me since the beginning of this whole thing and it’s so comforting to know I always have you to turn to. xoxo

  4. Christine Kwiatkowski says:

    Not only is Ava an inspiration for all children of any ability, but her mom is a remarkable young woman with a spirit and heart that confounds. Ms. F (Jen) is a parent in my school community and she has so generously and thoughtfully shared Ava’s incredible journey and accomplishments with me. I, in turn, eagerly share Ava’s stories with our school’s speech pathologist who marvels at the work of both Ava and Mom. What a priviledge it is for me to know this beautiful family and to be allowed the opportunity to be humbled by the strength, hopefulness, and tenacity to do what all parents are entrusted to do – give their children, their best and to do it so selflessly and with such love.

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