A good book on your shelf is a friend that turns its back on you and remains a friend. ~Author Unknown
A good book has no ending. ~R.D. Cumming
We were at Waterloo Town Square this afternoon listening to our favourite accapella group, the Knight Caps. We stepped into Shoppers Drug Mart to cool off and saw a special Collectors Double Issue of EW titled: “Goodbye, Harry”. Of course, I had to have it even though I’ll never say goodbye!
The Harry Potter books and movie series have been a huge part of my life for the last 10 years. I can remember the dates I read each of the books, what I was doing in my life at that time, and who I saw each movie with! I first started reading the books in the summer of 2002 when I lived in Dundas while doing my master’s degree at Mac. Lucky for me, the first movie came out in 2001, so I got to watch it over and over again that summer. I immediately became enthralled in the series, pulled in by its underlying themes of friendship and love.
By 2003, the 5th HP book came out. I took it with me to Florida in June when Mom, Ashley, Jenny, Erin ventured down for a mini-vacation before my August wedding. When Sirius died, I cried and cried, desperately trying to hide my tears from Erin who was also reading the book! It felt like such a huge loss for Harry – no parents and now no guardian. I was totally entrenched in the story. After our wedding in August, I lugged HP 5 on our honeymoon so I could reread it and share it with Jeremy – he loved it too.
Book 6 came out in 2005 – it provided a welcome distraction from my uncle’s battle with cancer. I knew right at the end that Snape wasn’t evil and that Kreacher would eventually redeem himself for his earlier betrayal.
In the summer of 2006, Jeremy and I took our last kid-free, worry-free trip. I had all the HP books on my IPOD and listened to them as we traveled around Europe. I distinctly recall listening to book 5 while traveling to Inverness, Scotland, imagining the landscape Hagrid would have taken to visit the giants! Jeremy told me on that trip that we’d soon have phones and IPODs that would do way more, like be in colour and allow you to watch movies, etc. I laughed, thinking why that would even be necessary for anyone. This is coming from the owner of 3 IPOD touches…hmmm…one of which is Jamie’s. Anyway, we got to visit the HP castle used for the first 2 movies in Alnwick. Super cool. I can’t admit how much the train ride cost to get there – it’s too embarrassing - but it did make the trip for me!
The summer of 2007 was an important time for HP fans: Book 7 and Movie 5. I remember it distinctly b/c this is the year Jamie was born and he wouldn’t take a bottle. The only freedom I craved was 2.5 hours to see HP 5 in the theatres, so Mom met Jeremy and me in the movie theatre parking lot, I fed Jamie while Jeremy went to get our seats, and Mom took Jamie back to our house. It was amazing. Totally worth all the effort! I also remember being up during the night, like 3 or 4 am, reading book 7 while feeding Jamie. I was so scared at times that Voldemort was going to come around the corner, I had to stop!
The books have always provided me with a solace and an escape mechanism. I love how they take the reader away to different place where the main characters are surrounded by a deep friendship and love. Plus the books stress the importance of cultivating relationships with animals. It wasn’t until I had Kate that I realized another big reason I love this series: differences are accepted.
I guess I could write forever about how I feel about HP. As the movie series came to an end this week, I hope that something else can come to an end for me. After Kate’s 2009 birth, I entered into a really dark time in my life. I think my doctor thought I had bad post-partum, but looking back I now know it was my knowledge and awareness that something was different about Kate. When we weren’t sleeping in the fall of 2009, I reread the books over and over again. They helped me get through a very dark and scary time and for that I am truly grateful. It might seem a bit silly to place so much emphasis on a bunch of books, but it’s true. Reading them got me to calm down and sleep when I was at my worst in 2009 – 2010, especially last summer while we awaited Kate’s diagnosis. I remember one of the comments I made to Jeremy when Kate was tested for AS was “I just wanted to be able to read and share HP with her”. I’ll still do that…somehow…
Acceptance. Friendship. Love. Amazing messages to deliver to children, teens and young adults. Thank you JK Rowling for giving me such a wonderful safety net and providing me with pure enjoyment.
I love it up at Mom and Dad`s cottage. It`s a place of serenity and solace for me. It actually got me through the difficult time waiting for Kate`s AS test results last summer. Kate and I spent a lot of time swimming to the middle of the lake where we could just BE. It had such a calming effect on me.
This year is no exception. I had another nice long swim today with Kate in her dolphin floaty from the Macey family. Kate`s so strong, I think she may pull herself right out of it! She definitely needs someone around at all times, but that`s time well spent. Water is therapy for both of us, just in different ways. Kate woke up a little grouchy today. She seems off: shouting while she`s eating, fussy when she wakes up from napping. I know something is going on. We`ve now deduced ways to determine what`s bothering our non-verbal child. Today, I tried the water after food and potty didn`t work. It instantly changed her. She becomes so expressive in the water…in fact, I would say she`s making more sounds since she`s been swimming on a daily basis since July 1. So Kate and I swam out to the middle of the lake. There`s barely anyone here. I could easily talk to Jamie and Jeremy on the dock and they were probably 500 m away. We got to take a moment together where we could just breathe and feel better. In the middle of the lake with no one around, the sound of the loons, the backdrop of Muskoka, it feels like we`re the only people on Earth. It makes you feel like you have an important place in this universe. I know Kate certainly does! I will always treasure these moments with my daughter. She`s a hydrophile, and that`s not because she has AS, it`s because she`s like me. When I see her in her floaty, or splashing with assistance, or even in the O`Brien sea biscuit behind the boat (yes, we believe in FULL inclusion!), I always think to myself `that`s my daughter in the water`and smile.
“Nothing is predestined: The obstacles of your past can become the gateways that lead to new beginnings.” ~ Ralph Blum
I feel like this may be a long post, but we’ve had a truly amazing end to the month of June so I have lots to share.
Right after Kate’s birthday, we went to the Font Hill McDonalds for a special Kate’s Kause fundraiser. This staff is just unbelievable. They put on a great day for the community, all while raising funds for Kate’s Kause. My grandmother got to see it, which also made it really special. I continue to be astounded and blown away by the kindness and generosity of others. WOW.
We made sure we were kept busy on the 23rd as that was the anniversary of Kate’s AS testing. I think that date was harder for me than the diagnosis – it really confirmed my worst fears that something neurological was the culprit for Kate’s delays.
On June 24th, Kate, Jeremy, Uncle KP, Aunt Jenny, and Grandpa all participated in a McFamily golf tournament for Kate`s Kause organized by Grant Ford at the Cutten Club in Guelph. When Grant planned the date, he had no way of knowing that the end of June would be such a difficult time for us. The golf tournament provided a welcome distraction. I wish I could describe the feeling this day gave all of us. It was one of the most amazing days of my life. The McFamily golfers were so wonderful and supportive, and very interested in us. We had a great time – Jenny and I got to drive the kids around in a golf cart, which is a throw back to our childhood when we used to drive the carts over as many hills as we could on the golf course! I got to stay for lunch where my father and I were presented with a cheque for $34 000! . It’s an unbelievable amount of money to raise in one day!We were floored by the amount, but I think the thing that resonates the most with me was the support for my Dad. After it was over, my brother in law told us he felt it was the best day. I tried really hard to mentally bottle the feeling of elation and support I felt from these wonderful people. I will never, ever forget it.
Five days later, we attended our Keg Thanks a Million reception where Kate`s Kause received another $25 000. What a week! An hour later, Jeremy and I had to attend the Bluevale Commencement ceremony. As we stood in the entrance way to the commencement ceremony with our large cheque from the Keg, we got to hear our principal’s speech. She spoke of what it means to graduate and to do something extraordinary. And then, as examples of amazing accomplishments, she mentioned us! US! In front of all these students, whom we have a lot of respect for, their parents and family, and our fellow staff! I missed the rest of the speech because I started crying immediately. I`ve never had that happen before – to be called amazing in front of a huge crowd. I thought back to my own high school graduation and the hopes and dreams of what life would be. I always wanted to do something great for others. At that moment, I finally realized that Kate is helping me make the difference for others that I so wanted to make. I guess I don`t really view what we are doing as something extraordinary – to us, it`s ordinary and part of our life. I love a challenge, love to busy, and I guess I like to work hard (OK maybe I love to work hard!). But, I`m glad to know that our efforts are well recognized. So to those of you who`ve been telling me that all along, I now get what you were saying. Thank you.
The very next day, Bluevale had to say goodbye to some amazing staff members. I was particularly upset about one of them leaving, knowing that Jeremy would miss him so much. When J got up to make his goodbye speech, he mentioned that the best moment he experienced at Bluevale was at Kaps for Kate in May. As soon as he said that, I was reduced to tears. I think (I`m not positive because I was crying already) he talked about how amazing it was to be a part of the Bluevale community, listening to the choir singing It Takes A Village, conducted by Nancy Kidd, with the Meissners around them. I felt it was a powerful moment for me, but didn`t realize the depth to which it hit others. He`s right though – when I think back to that night, there was lots of hugs, tears, words of support…but above all else, there was love. A love I`ve never felt before…the love of hundreds of people at once. I think my heart almost exploded that night, but I know it definitely melted as I watched this soon to be new father pour his heart out in front of our entire staff.
I`m sure you can see why it was a truly magical week. Thanks to those who got to live it and experience it with us. And a big thank you to my dear Kate – I would be lost without you. Happy birthday week miracle girl! Look at all you've done...it's all because of you, Kate. You're an inspiration and you inspire others to do great things. That's more than I could have ever hoped for my daughter. Well done, baby girl. Well done.
Happy 2nd birthday, sweet Kate!
I can definitely say that I found this birthday much more celebratory than last year. When Kate turned one, we were 2 days away from meeting our neurologist at Mac. I knew something was going on with her - I bought her toys for her 1st birthday that were suitable for a 3 month old. I still remember shopping on a Saturday afternoon in St. Jacobs at the toy store near the red caboose. Our doggie had just passed away from heart disease and cancer and there I was shopping for toys for Kate, wondering what would become of her in the next few days. Geeze, that was hard.
This year is a lot better. Kate is meeting milestones in a good sequential order, she's just really slow at reaching them. I feel like Kate is on the verge of something...she won't stay still. She's become so motivated to do things. When I carry her around outside, she actually tries to get out of my arms. I don't know where she thinks she could go, but I put her into a stand and she'll start taking what are now her trademark big, purposeful steps! Kate has come so far...farther than I ever expected.
Today was a day of mixed emotions. We said good-bye to our physiotherapist at Blue Balloon, who we met one year ago this very day. We couldn't have survived this year without her. She was more than just a therapist. When Kate was being tested for AS, my very good friend who lives in Washington DC started a Novena prayer for Kate. He prayed that the right people would be brought into our lives who could help Kate AND help us. For me, that person was Kate's physiotherapist. Kate wouldn't be where she is right now if it weren't for her. In the meantime, there is no PT available at Kid's Ability for Kate. She will go from receiving 3x/week PT to nothing. It will be quite the change, but we will use the time to take a break this summer. It's time for a "normal" summer for us. As Jeremy told me yesterday, it's our first summer in four years without a child under the age of 2! We are due for a good one - 2009 was horrible as Kate wouldn't sleep after I fed her and 2010 was no better as we waited for her diagnosis.
We went out for dinner to East Side Marios b/c that's Jamie and Kate's favourite. It's unbelievable what Kate can eat! After dinner, I took Kate for a walk in her new stroller/wheelchair that arrived on Saturday. She really likes it, but I'm still having a hard time accepting it. It's another cruel reminder of what's happened to Kate and our family life, but it's a necessity that will help her develop good posture and stronger muscles.
Thank you so much to all of you who have answered my plea for votes for the Vivint contest. FAST is competing well with another group called Team Sanfilippo Foundation. I read about them because FAST fluctuates a bit and I wanted to learn about our competitor. If there could be something more tragic than AS, this is a likely candidate. I checked out their website. At the bottom of the info section, it says life expectancy is 10-20 years. My heart dropped to the floor and I immediately remembered the first question out of my mouth when our Dr. at Mac told us he was testing Kate for AS: what will her life expectancy be? He told me he thought 40-50 years, which I now know is incorrect. But for a few heart-wrenching days last June, I actually thought that in all likelihood, Kate would definitely go before me. The worst nightmare for any parent has got to be seeing their child pass before them, so I can totally appreciate how the parents of Sanfilippo Syndrome children must feel. I lived with knowledge like that for a few days last year and it rocked me to my core - I am amazed at how some parents cope when presented with utter devastation. To any parent out their who faces any struggle with their child, you are amazing. Thank you for giving your children good lives. It's the most important thing you'll ever do.
With that, I'm off to bed. Kate is doing exceptionally well and we are looking forward to a fabulous summer! If any of you have pools, feel free to invite us over!! :-)
Hello friends and family!
First, let me say thank you for tolerating my daily reminders over the past month and continuing to vote and spread the word for Kate’s Kause. We will know the official results on June 29th. I will try not to go nuts in the mean time!
Secondly, I have yet another favour to ask of all of you. I apologize in advance if you find this a bit heavy and long-winded. I want to tell you about FAST. The Foundation for Angelman Syndrome Therapeutics (FAST) was started by a hard-working AS mom in Chicago. It gives 100% of its donations to AS research and is working hard to continue to fund Dr. Weeber of the University of South Florida as he tries to convert his “cured” AS mouse into a human reality. FAST has an opportunity to win $250 000 in the Vivint Gives back online voting competition that ends Aug 27th. Note well, Dr. Weeber’s AS mouse “cure” only cost $100 000. One of the other Angel moms did a quick count after the preliminary stage and determined that we need an extra 200 votes/day to catch up to the leader, provided the leader doesn’t garner more support. Kate’s Kause can surely supply these votes. We are strong, powerful, committed and supportive. So now I’m asking for some more of your time – about 15 seconds a day – so you can make a difference in my child’s life.
I can’t truly say in my heart of hearts that I wouldn’t take Kate any other way. But I WOULD be lost without her. There is no doubt that I need her in my life as much as she needs me. If you can believe this, there have actually been times where I thought I was the lucky mom (over neuro-typical moms) b/c my Kate shows her love for me like no other child would or could. However, I would do ANYTHING to make her better, or even lessen her symptoms, the big one being the seizures. In the early days of the unknown, the AS testing, and AS diagnosis (aka when I lived hell 2010), I pleaded every day and night for an exchange: please spare my daughter in turn for me. But life doesn’t work that way. I know that and as a result, I am witness to a miracle named Kate. So here we are, with a very rare neurogenetic disorder, fighting our asses off (well, not completely off as mine is clearly still there!) and still finding a way to enjoy life. How can you help? How can you make things better for Kate? You can participate in the Vivint contest. Angelman Syndrome is the only neurological condition that has even a glimmer of hope of a therapeutic in the very near future. All other neuro conditions are just too complex. FAST is currently funding the testing of 4 drugs that are already approved by the FDA! Already approved = huge decrease in waiting for the drugs to become available to the public. Research needs money and it doesn’t have to be yours – Vivint’s money will do just fine! So log on and start voting TUESDAY JUNE 14TH. Spread the word to all your friends who helped with the Keg Thanks a Million contest. Please, do this for my little girl who gives so much love and happiness to everyone she meets and asks for only one thing in return: life itself.
Thank you. Thank you for taking a brief moment out of your day for Kate. She so deserves it.
Here are the instructions:
FIRST TIME VOTERS: (login process only needs to be done once – then it gets even easier!)
1) Log into Facebook
2) Then go to: www.vivint.com/givesbackproject and click on “Log in” upper right corner. You may or may not have to select “Allow”.
3) Then, scoll down to “Top Charities” and:
Click on “Central” region
4) Click on “FAST.” If you have trouble finding FAST, you can probably use this direct link as well: http://www.vivint.com/givesbackproject/charity/43
5) Click near bottom to vote. (Note that if you do NOT want a message to appear on your facebook wall that you voted for FAST, you can check the box "no thanks" before voting, but if you do post the message to your facebook, it makes it easy for your friends to add a vote for FAST by following your link, so it helps to post this at least once in a while.)
6) If you did it correctly you will receive a “success” message.
SECOND TIME VOTERS:
1) Go to <span>http://www.vivint.com/givesbackproject/charity/43</span> (Bookmark this page for daily voting!)
2) If prompted, log into facebook, through theblue login button at the top right corner of the page
3) Vote as you did the first time, wait for the "success" message!
Thank you for your help and if you have any problems with the process please let me know and I will help you through it. (I am basing my instructions on the nomination phase, so hopefully it will all still be accurate tomorrow!)
To say June will be a tough month is an understatement. It was June 1st 2010 when Cooper started collapsing on a regular basis and had to go to OVC to find out he had dilated cardiomyopathy in addition to his cancer. He passed away on June 16th. A week later, Kate had her appointment with a pediatric neurologist and was tested for Angelman Syndrome. Our world was officially rocked. Life as we knew it changed forever.
But I think we've all come a long way since then, especially Kate. Her development was basically stagnant until the end of February, when she started army crawling. We are now getting to see our child hit physical developmental milestones. And for those who've ever thought their children grow up too fast, watching Kate grow is way more enjoyable than I ever thought it would be. Kate's slow but progressive development has made us appreciate what a little miracle she is! And of course, we draw strength from our family and friends who've been behind us since the beginning, and a community that continually lets us know we're not alone. I know Jeremy and I both feel empowered after last weekend's Kaps for Kate concert. It's truly an amazing feeling.
Yesterday, we took the kids to Bolender park here in Elmira. There’s a toddler/preschool section and a school-aged section. Kate went on the swings and then we sat her in the grass to crawl around b/c even at 5:00, it was scorching! After a bit of watching her in the grass with her Dad, I remembered what another parent told me about inclusion when I went to the Integration Action for Inclusion anniversary in April: even if Kate can only do 20% of an activity, I should help her to do it. So Jeremy brought her over to the toddler section where Jamie was playing. The structure forms a perfect square with a tunnel on one side and 3 bridges on the other. I helped Kate to walk to the tunnel. She put her hand on the railing and took a few steps with me holding her under her arms. After a few steps, she would lift her feet off the ground and I’d remind her that her feet stay down. We walked to the tunnel, where she crawled through to meet Jamie on the other side. Of course, I couldn’t fit through the tunnel so I had to go the long way around!! I got her to her feet and she walked all the way back to the start of the tunnel, lifting her feet with big, purposeful steps. We did this cycle at least 5x, with Kate keeping her feet on the ground more and more each time. Jamie would meet her halfway, cheering her on and giving her a hug when she reached him. It was the cutest, most amazing thing. Honestly, when this child walks by herself, it will be earth-shattering!! So, even though I know there’s a lot Kate can do, I won’t just assume she’s happy to sing and then be done at the park. She’s going to walk these structures!! She’s so much more motivated – we can see that it’s coming…it’s still probably far away, but it’s coming!
Keep voting for Kate’s Kause in the Keg's Thanks a Million contest – we’re going to build a spectacular park where no child will ever doubt their abilities or wonder if they belong.
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.