Day 244: Diagnosis Anniversary

1 Year ago today was the day Madison was diagnosed with Cerebral Palsy. It was a Tuesday afternoon at Grandview. Madison had been doing PT and OT for a few months prior to this appointment, but at this point we had no conclusions as to why she wasn’t meeting her gross motor milestones other then the fact she was born premature. Our appointment was with Doctor McDonald, a Developmental Paediatrician. Like many other appointments in the months prior, she asked us Madison’s birth story, health records and concerns we had. She also read through various reports from her PT, OT and other specialists Madison had seen as part of the preemie follow up care offered by the province. At this point we were not blind to the fact that perhaps Madison’s developmental challenges were not just developmental, but that there could be a neurological reason why things weren’t coming as easy to her. Also, from our background with working with kids in Special Ed environments and Variety Village we also had thoughts of other possibilities, but never seriously looked into those. As the doctor measured Madison’s range of motion with her joints and muscles, had her try and sit and do different activities, we could tell by the look on her face that she was confident with what was wrong. She started telling us about all the therapies that would be important for Madison and the things she may or may not be able to do based on her physical challenges. She seemed to skip over the diagnosis part and discussed CP as a possibility. So we just flat out asked. “Does Madison have a neurological disorder? Does Madison have CP?” She replied yes and then continued on with discussing next steps. From that point on we surprisingly didn’t have any emotion. No reaction. But everything was blurry, yet we continued talking with her and coming up with a plan. Our immediate reaction leaving the appointment was…”OK – now what? Let’s have a family meeting…let’s get things in place…let’s book more physio…let’s start filling out funding forms…etc.”  We dropped Madison back off at daycare and headed back to work. After driving alone for a few minutes our minds went to a dark place and James and I called each other at the same time. We had a good cry over speaker phone and talked about all the things we didn’t know if she would be able to do like would she be able to ride a bike? play on a sports team? and then our thoughts went to even more basic skills that brought on even more tears and concern…would she be able to sit by herself? would she ever be able to walk? would she always be behind? would she have friends? Would this effect her speech? Would she be able to communicate? Our conversation ended as we each arrived at work. I sat in my car in the back parking lot at Branksome and cried for about 20 minutes. I remember watching the kindergarten class playing in the playground and how hard that was to see. For whatever reason, a few kids that we had worked with at Variety Village came to mind. How hard they tried to play games, but how happy they were. I called Madison’s daycare to set up a support meeting. For whatever reason those memories were all it took. From that moment forward we have had a few tears, but we have been positive and doing everything possible to keep moving forward. We haven’t looked back.

These pictures were taken a year ago – the week of Madison’s diagnosis.

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Looking back on a year ago and the dark moments we had to go through – it really was Madison and her awesome personality, motivation and willingness that moved us forward. She is our shinning star and has brought so much joy and inspiration to our lives. Looking back on the past year it is amazing to think about everything that she has achieved. All of her therapies, doctors, specialists and most importantly her amazing family and friends that have been so supportive and generous. We are extremely grateful for everyone who thinks of her, loves her and looks out for her and that we live in a city where our supports are endless. Seeing Madison’s growth over this past year makes us excited for the many possibilities that are ahead of us.

There will be many more important milestones ahead of us, but we think the anniversary of Madison’s diagnosis will always be an important time for us to look back, be thankful for what we have and to keep moving forward.

Pictures from Madison’s therapy at March of Dimes today

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1 comment

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  1. Cindy Fry

    You guys have done an amazing job in what I am sure has been a challenging and emotional year. Just look to the future and all the things your wonderful daughter will be able to accomplish because of your hard work and dedication to her now. My foster brother is now in his 70’s and has CP – he was the gardener at Bloorview for many years before he retired. She will have a long, happy and productive life.

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