This is a big post and may seem jumbled as I try to piece together bits of memory. I’m sorry. My biggest resolution for 2014 will be to make more posts on the blog so I don’t have to do a year in review (and scrapbook more of the kids’ pictures, even if it is an electronic scrapbook!).
We had some big, monumental moments this year. Despite the gravity of Kate’s seizures, she has met so many milestones , most of which were totally unexpected. It was my greatest dream for Kate to walk independently. To see her walk so beautifully with such purpose and care has been surreal. We are so proud of her accomplished walking.
Kate took her first official steps on Nov 15, 2012. By Jan 21, 2013, Kate was walking more than 20 steps in a row. Her gait was wide and her arms flailed in the air above her, but it was amazing to witness. In February, we met with the special education consultant from the WRDSB who briefly tried to tell us about the congregated classes offered by the board. We clearly stated inclusion was our choice and he began the process to get Kate entered into her mainstream school. He also mentioned that Kate had one of the best gaits in an "Angelman child" he had ever seen, especially in a child so young. At this point, Kate was still walking holding our hands. We never expected her to get as good as she did. Once September 2013 came around, Kate was stronger, her gait got narrower and she needed less support. By school holiday break, Kate had become a completely independent walker.
Kate was in a charity fashion show in early May. She got to wear a beautiful flower girl dress with a tiara on her head. Before the show, I knew I needed to get Kate some shoes that were fancy but would allow her to walk, so I took her to our favourite store – Baby Charlotte. As Kate walked into Baby Charlotte, the owner Carla was on the phone. Carla told the person on the other line "I gotta go...a miracle just walked in". So grateful for the love, support and encouragement from this local business.
Here are a few shots from the Beautiful Me Fashion Show by Guys and Dolls Salon and Spa.
In the middle of May we took the kids back to Florida because I had successfully bid on a week at an Interval International resort at the FAST Gala silent auction in Dec 2012. We spent Mother’s day (May 12, 2013) at the Orlando Science Centre for something different to do. There was an exhibit on Clifford the Big Red Dog with lots of opportunity for play and interaction for the kids. I think I cried the whole time we were in the exhibit. It was the first time Kate showed me that she wanted to play and explore like the other kids. I let her walk around, picking and making her own choices, sitting in pretend cars and crawling through tunnels. It was breath-taking. The very next day we took the kids to Universal Islands of Adventure because I love Harry Potter so much. Jenny and KP originally offered to take the kids back to the resort so that we could enjoy Hogwarts, but Aiden became very sick so the kids stayed with us. It was unbelievably amazing. We had a great time! Kate went on every ride she could, including Spiderman. Jamie and Kate played hard in Popeye’s boat and totally loved exploring Jurassic Park. They were both big fans of Harry Potter, enjoying Flight of the Hippogryff three times. These kids are fearless! We drank butterbeer and then finished our afternoon in Dr. Suess Landing. It was such an enjoyable day. I felt exhilarated, hopeful, and knew I was living the life I was meant to live. We enjoyed another amazing day on May 15th at Disney’s Animal Kingdom for Jamie’s 6th birthday. The kids were treated to a character buffet at Tusker Haus in Africa. Jamie and I finished the day off together at Magic Kingdom. We completed all of our favourite rides in 2 hours and even managed to see the new Fantasyland. One of my favourite memories from this evening with Jamie was watching him play with the $5 pirate sword he bought at the Pirates of the Caribbean ride. Right in front of the new Fantasyland, Jamie practised with his new sword. Parents and grandparents alike walked by and smiled at his cuteness. He was so into it.
We had a fantastic summer, which included a road trip to Boston to meet Dr. Thibert. He is a paediatric neurologist who specializes in Angelman Syndrome. Dr. Thibert has been so amazing in his support of Kate and our family. He helped me choose a seizure medication back in 2012 for Kate and gave us great recommendations for help with sleep this year. We look forward to continuing this great relationship that will ensure our Kate is given every potential to be the best she can be. We also enjoyed an amazing summer at the cottage with lots of swimming and playing in the sand. So many great memories to last a lifetime. Click here to see some awesome photos from the summer!
Kate started junior kindergarten at her local mainstream school in September. It gave me high anxiety to send my baby girl to school all day, every day, but she quickly found her niche in her classroom. After the first week of school, Kate used her PODD book to say “more to say: let’s go: places: elementary school”. We were foolish not to explain to her that we don’t go to school on weekends! The following week, Kate would march out of school at the end of the day, give me a hug, then try to get back into the building. It became very clear that she loved it. It brought me great peace to know how happy she was. I was slow to learn this but it became apparent to me that Kate was truly happy at school. One night at the end of September, after much stress and anxiety in our house on my part, my brilliant daughter delivered a beautiful message. At bedtime, she was fussy, so I crawled into bed to calm her. I told her I was so sorry that I stress about her growing up and going to school so much when I know how happy she is there. She listened and relaxed. She kept touching my shoulder and face to make sure I was still there. And then, for the first time in her life, this child with a sleep disorder snuggled up, got cozy, and fell asleep with her head on my shoulder. I've been waiting 4 years for her to relax enough to fall asleep like that! My fellow Angelman parents know how significant this is! It was wonderful. Our Kate is amazing and once again, taught her high-strung mother that she is OK. She is happy. She loves school. She's making unbelievable progress and it had only been 3 weeks.
Kate settled in nicely at her school before a bout of seizures hit in November. In October, one of Kate’s teachers at school overhead this: 2 grade 4 boys were talking about the awesome park at Gibson Park...Kate's Place. The one student said to the other, "do you know that Kate goes to our school?! Kate is at our school! And that's her classroom!". A good friend and supporter of Kate's Kause, Gail Martin, wrote a lovely article in The Independent about Kate at school.
Our good friend Mary-Louise Bertram visited us during the summer and again in October. She helps support us in PODD, literacy, writing, friendship, laughter and love. She is the epitome of friend. On October 14th, we were preparing to make an alternative pencil for Kate to have at school. Kate seemed interested in our easel but was unsure how to use it. Mary-Louise demonstrated that she could write and doodle with the markers. Jamie came over to see what we were doing and promptly took a marker and wrote on the easel. Once he was gone, Kate grabbed 2 markers in her hand and slammed them onto the easel. Jamie showed her how to do it by modelling. It was so powerful and quickly reminded me the importance of peer modelling: it’s so effective for Kate to learn from her typical, age-appropriate peers.
To be honest, I'd been feeling kind of crappy for a most of the fall. I'd been sick for 7 weeks; had pink eye and bad sinus infections. I was stressed at work; being 1/3 time is too hard. Our sleep was HORRIBLE because of Kate. And I really missed Mary-Louise Bertram once she was gone back to Australia. But in late October, as I dropped Kate off late at school after she slept in, I got a glimpse of Kate's JK journal. It looks just like everyone else's with a "picture" (Kate's scribble) at the top and some letters printed using her alternative pencil at the bottom. Holy smokes - it was beautiful!! I'm so proud of Kate's work and proud of her teacher and school team for really and truly "getting it". Included in the classroom AND participating in curriculum. Hot damn, that's awesome!
And so it is really hard to articulate the awesomeness I feel. With the help of wonderful family, a supportive community and an incredible big brother, Kate is living a life way beyond the constraints and difficulties of her diagnosis (I should really put diagnosis in air quotes - what does it really mean anyways?). She is doing things we were warned she wouldn't. There are so many things she's done over the holidays that I appreciate so, so much. Who would ever think that I'd appreciate the opportunity blow-dry Kate's crazy curly hair...a simple mother/daughter thing that I thought would escape us with an AS diagnosis...but today it happened. Life is full of surprises. Little things matter so much. These moments far out-weigh the struggles. She's my little girl - the one I always dreamed of. Merry Christmas to my two perfect children - you fill us with so much love.
A big thank you to our exceptional family and friends. You dream an amazing dream with us. We can feel your love and support. I won't name you here because I don't want to leave anyone off of this fantastic list but know this: you support, friendship and encouragement are rare. You are a person who truly knows what special means and you are loyal to us no matter what. We are so lucky to have your unwavering support and dedicated friendship. You make our lives easier. It takes a village. We are fortunate our village is so huge.
Kelly is Kate's devoted, caring, Type-A crazy mom. Kelly is a high school physics teacher who earned her masters degree in neuroscience from McMaster University in 2003.