Last night was the Bluevale Kaps for Kate, organized by our colleague Martin LaCoste. It was a concert lead by the Knight Kaps with guest performances by Bluevale’s Chamber Choir, the staff of the Bluevale Music Department, a staff band named “Staff Infection” (OK, you gotta love that name!), Shane Guse, Mary-Catherine McNinch-Pazzano, Nancy Kidd and John McLelland. I knew it was going to be an amazing concert, but I wasn’t prepared to be completely blown away. These people are all so wonderfully talented…and they gave up their time and energy for Kate’s Kause.
I can’t quite describe the feeling this performance gave me. I felt the full range of emotions in a short 2-hour span! I LOVED all the songs! We got to hear the 4 teachers of the Bluevale Music Department sing and to say they were amazing doesn’t do them justice. And the Knight Kaps (4 person acapella group) can do more than just sing – they can perform too! My music career only consisted of 3 years of trying to play the flute, but I did spend a lot of time on stage dancing. It’s not easy to put yourself out there in front of a large crowd, so I can appreciate what these kids had to do. You’d never believe this group was made up of high school kids. They are confident, smooth, talented, and so, so funny! At one point, my face hurt from smiling and laughing so much! I thoroughly enjoyed myself and didn’t want their performance to end! Thank you Jake, Cameron, Graeme and Martin - WOW!
As usual, the Bluevale Chamber Choir was second to none. I love when they surround the audience instead of staying on stage to sing. It’s like surround-sound but 1000x better. They sang one of my favourites: It takes A Village. I’ll try to find the lyrics for you so you can have an idea of the power this song elicits. You can guess by the title what it is about, but I really like it because reinforces that the village who raises the child not only shares in the joy, but also the burden. So as I sat there listening to what I think is the most perfect sound (voices of children), I was overcome with emotion. I felt like they were singing it just for me, like it was just them and me in the church and nothing else mattered. And that it doesn’t matter that there will be hard days ahead, because there’s an amazing community behind us. We are not alone. It’s such a powerful message and it means even more coming from these outstanding teenagers. Bluevale singers: I will never, ever forget what you did for me and how you made me feel so much better. Kate’s apparent seizure last weekend threw me back to where I was around the time of her diagnosis: life felt dismal, it was hard to get out of bed in the morning, and I didn’t know how I’d get through the day. I am in a much better place after last night – thank you so much for that, Bluevale!
Most importantly, I am unbelievably touched by what these kids did for Kate’s Kause, and in turn did for us. We are always appreciative of people who reach out to us and make a difference because it lets us know we’re not alone in this journey with Kate. Last night was the first time I felt that with every fibre of my being. Thank you – I will hold onto last night and never forget.
Wow, look at me go! I'm a blog-posting machine right now! It helps that I have a lot to say though! Look out!
Back in early April, I was welcomed at a meeting for the Linwood Lions Club. I got the opportunity to speak in front of a very warm and welcoming crowd. I told them a lot about Kate, Angelman Syndrome, our dreams for our baby girl, and this park we're trying to build. They listened intently and let me ramble on with my story! I handed out my business cards and left the meeting with thunderous, tumultuous applause following me. I was overwhelmed by their support and spirit. I had to turn back to take a look at them as I left. These strangers were wonderfully supportive and brought me to tears of happiness and hope as I left the Linwood community centre and drove home. Today, I received the result of that meeting: a cheque for $5 000! I am blown away by this donation. Linwood isn't even in Woolwich township, but that didn't matter to these people! Wow. I am just...wowed. I will never, ever forget moments like these. Never. Thank you Linwood Lions!
We are super excited for McHappy Day this WEDNESDAY! Jeremy and I will be working at the Elmira McDonalds from 4:30 - 5:30 and Kate and Jamie will be at the restaurant with Grandma and Grandpa. Please stop by for a visit if you can! The following locations are participating: Elmira store, St. Jacob's Walmart, Ira Needles Walmart, King & Wellington store, Victoria St store, Ottawa & River Rd, Market Square and the Welland Stores. A portion of their McHappy Day funds will be donated to Kate's Kause.
Amidst all of this excitement, two very dear family members were verbally attacked this past weekend for our efforts for Kate's Kause. We were accused of exploiting our daughter Kate, amongst a horrible bunch of other details. It's upsetting, but doesn't make me sad. It only makes me angry. And as I've been telling people since Kate's diagnosis, I already have a lot of anger in me! While I know that we are bound to encounter this type of insensitivity and outright ignorance, I won't take it lying down. At the Integration Action for Inclusion anniversary last weekend, I had a moment where I realized that taking good care of Kate and fighting on her behalf for FULL INCLUSION is what I was BORN to do. I am a passionate person, who loves deeply and wears her heart on her sleeve. We, our unbelievable family, our friends and colleagues, local churches, community groups, the provincial and federal governments who granted us charity status, have all SUPPORTED and ENDORSED the charity that is Kate's Kause and will all take up the fight against ignorance. Bottom line: I want a better environment for my Kate to live in. People are entitled to their opinions, but there is no excuse for ignorance - it's only motivation is to cause pain. As Kate's mom, it's my job to stand up to ignorance. And in this case, it's quite easy to do. I love a good battle of wits - especially when the opponent is completely unarmed. :-)
So join us on McHappy Day this WEDNESDAY and stand up against ignorance. Stand up for kids like Kate, who have no voice, and need people like you who are kind and tolerant and will support full inclusion. This is a fight worth fighting for. This is a fight for my beautiful daughter Kate, who deserves all the goodness the world can give. I know you love Kate too. I can feel the support from all of you - it's touched the deepest parts of my soul. Thank you for reaching out to us. Thank you for making disability not such a lonely and hard road.
Last year, I told Jeremy that the only thing I wanted for Mother's Day was for Kate to walk and talk by the next time this day rolled around. Here we are one year later with a very different life than I would have ever imagined. Kate is no where near close to walking, but she works so hard trying. I'm not really fussed about it, for everything Kate can't do, there's a million wonderful things she CAN do! It's just a bit of a sad reminder of Kate's reality.
There's a tonne of wonderful sayings going around on Facebook as everyone reaches out to show appreciation to their Moms. I wanted to share a couple of them that ring true for me and other Moms in my situation. Please enjoy!
A great FB status:
For all the moms who had to wait longer to hear a first word, who spent more time in doctors offices with their child than on play dates, who endure the countless 'bad days' and the stares from other people...For the moms whose child's first friend was their therapist...For the moms who face special needs everyday...Happy Mothers day to the greatest mothers of all!
To You, My Sisters
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children ungergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Oh wow, it’s been a long time since I posted last! How embarrassing! At least I have a decent excuse: we are now into week four with Kate’s companion dog, Reebok. He’s a 19 month old golden retriever with an amazing personality. He’s so kind, caring and gentle. And it’s so cool that he’s already trained! Reebs has brought so much love and warmth into our house – and he’s also filled an absence I haven’t had the courage to acknowledge until he arrived. Life feels a bit more complete now.
Kate’s Kause has had an amazing month. I just can’t believe how well we’re doing. Our current balance is approximately $56 000 – this is just amazing for 6 months of fundraising! We received $2000 from the New Apostolic Church in Elmira and over $1200 from the BCI Entrepreneurship class. We are pretty pumped for McHappy Day on Wed May 11th. There are several McDonald’s stores that are supporting Kate’s Kause with a portion of their McHappy Day funds: Elmira, St. Jacobs, Listowel, Fergus, Kitchener stores (Ottawa and River Rd, Victoria St., King and Wellington, Walmart Ira Needles, Market Square), and Welland stores. Jeremy and I will be volunteering at the Elmira McDonalds from 4:30 – 5:30 and Kate will also make an appearance – make sure you stop by! We also have a golf tournament coming up on July 11th at Elmira Golf Club. Check out our website for details!
I am finding the spring a bit tough right now because last year at this time I was going crazy trying to figure out what was going on with Kate. I can actually remember that the diagnosis I had for her this week one year ago was Sensory Processing Disorder! Each week, I bounced from one diagnosis to the next in desperate attempt to convince myself it would actually be nothing. For this reason, and many others, I am grateful for the experience I had on the weekend. A good friend and fellow Angel mom invited me to the Integration Action Group’s 25th anniversary event in Toronto (http://www.integration-inclusion.com/). It was held at a beautiful old church, right beside the Eaton Centre in Trinity Square. This is an amazing group. I got to meet the pioneer parents who fought the courts and school boards to get their disabled children into schools. I can’t believe school doors were closed to disabled children only 25 years ago – the idea seems ludicrous to me! I met wonderful, inspiring special families who all live lives with no limits placed on their kids. It really reaffirms my thoughts and vision for our Kate: I want her to be happy, live in a comfortable place of her choosing, surrounded by the people she loves, working in a position she loves. These people reminded me that all of that is truly possible. It’s amazing that you feel such an instant bond with strangers when dealing with disability. These parents all went through the same thing we did: they had to face the realization that there was something different about their beautiful babies. I think that was the hardest thing I've ever had to do in my life. I listened and learned from these parents, and cried at their amazing stories. What an amazing night with great people. We, and of course Kate, are forever grateful for the efforts and anguish they went through to get our kids included.
I went to McMaster today to meet with the genetics counsellor and geneticist. I had received a call from them back in April, stating that CHEO (Children’s Hospital of Eastern Ontario in Ottawa) wouldn’t proceed with testing my blood to see if I was a carrier of AS b/c Kate’s FISH test confirmed I wouldn’t be. This isn’t entirely true, so I was anxious to learn why they thought discarding my test was OK. I had a great appointment and had no trouble gaining the support of the genetics counsellor and geneticist. Not only did they agree to test my blood to make sure I am not a carrier of AS (big implications for family members and Jamie), but they also agreed to do a DNA microarray analysis on Kate to find out how big her deletion is! This is unheard of in Canada, but they are willing to do it for us! I left McMaster feeling happy that I had won a small victory and gotten more than I wanted, but also feeling a bit sad. McMaster is where Kate was tested and diagnosed…I’ll never get over that. Being there brings overwhelming sadness…I’m happier Kate goes to HSC in Toronto.
On another note, Kate is doing exceptionally well. If you haven’t seen her early transition video, scroll down and take a look. It’s awesome. Kate is doing really well with her crawling and can even drink out of a straw now! She’s a rock star! Plus, she’s incredibly beautiful, both inside and out!
Jamie has just been outstanding lately. The other night when I tucked him into bed, I did our usual ‘good night, I love you’ talk. He responded with, “I love you too. Mommy, you’re the best. You’re the best of the best.” Oh be still my heart. I gave him a big hug and took in the moment. He’s an amazing little boy. He’s super excited about our upcoming trip to Buffalo for the ASF walk. I told him he would get to stay in a hotel, go swimming, shop at the Disney store, eat at Olive Garden (or Cheesecake Factory if I have my way!), and swim some more! After I explained it all, he asked about how big the pool is and what shape it is. Then he said, “Mommy, thank you so much for telling me about this!” He’s so freakin’ cute, I can’t stand it!
I’ll keep you updated on our progress in May. Thank you for your ongoing support!
Kelly is Kate's devoted, caring, Type-A mom. Kelly is a high school physics teacher who earned her masters degree in neuroscience from McMaster University in 2003.