Today Kate is 3 years and seven months old. Today she walked her most number of independent steps ever...22. So awesome.
It's been almost 2 years since she started crawling.
Miracles, in the sense of phenomena we cannot explain, surround us on every hand: life itself is the miracle of miracles. ~George Bernard Shaw
Totally awesome day today. Kate is doing so well with her walking. Today she was standing facing a bed, turned around and walked to my sister Jenny ALL BY HERSELF. Of course, when we tried to video it, she knew what we were up to and couldn’t be bothered, but it was so awesome. Kate wants to walk everywhere. It’s really, really coming.
And…there is now no doubt in my mind that Kate has said her first word. And being the best daughter in the world, her first word is “Mmmmmomm”. We’ve heard her say it before, but were unsure if it was intentional. Over the holiday, we got our confirmation. This time, she was sitting on her bed with Dad, angry that I wasn’t with her. She got into high kneel, reached out her arms and said “Mmmmmom Mmmmmom Mmmmmom”. It’s almost a daily event now. She is so cool!
Time. The last week has left me with a problem. I’m having a difficult time with the concept of time. I’m scared about how quickly it’s going and how it speeds up as I age. There are so many moments where I want to freeze everything and take it all in. Why isn’t that possible? So many moments where I actually feel my breath get taken away.
I figured last summer (2011) was the best summer of my life. I thought that surely life was about to take a terrible turn for the worse. That Angelman Syndrome would get the best of me and ruin my happiness, my family’s happiness. We had some bumps along the way, but essentially, the school year of 2011 – 2012 was pretty amazing. Even during our 5 months of crappy sleep, Kate’s constant fevers and seizures, it was all still pretty amazing. After all, we do have the most fantastic park around. And I truly believe it has accelerated Kate’s development. But once again, at the end of this summer (2012), I’m faced with the same feelings that things are about to get bad. Yet this time, I have a little hope that maybe, just maybe, life might continue to be as wonderful as it is right now. If we could only be so lucky!
Last night, I had a bit of a panic attack. Kate is now 3 years old and Jamie is 5. Time is sleeping through my fingers faster than quick sand. Kate is starting the preschool program (2 mornings a week) at a community preschool. I remember Jamie’s first day of preschool so clearly…TWO YEARS AGO! Upon this thought, I was stricken with huge emotional pain. Next year, Kate will enter JK. She will be at her neighbourhood school because that’s where she belongs, but I’m so, so scared about it. I don’t want her to be left alone. I don’t want her to be friendless. I don’t want her to feel anxious. One of her greatest strengths is her set of social skills. I realize these are all feelings any parent feels about their child, but it’s a bit different with Kate. I just want her to feel loved and valued. Today, as if perfectly on cue, I was reminded that sometimes, parental fears are founded on that alone…fear. Here’s what happened:
Kate has a new Weehoo I Go trail-a-bike. We got her one after Jamie loved riding on the Trail-a-bike a friend graciously sold to us. We were out for an evening bike ride and saw the neighbourhood girls on our way back home. We stopped our bikes to chat and then returned home to bathe the kids. I got Kate out of her Weehoo and she did her classic nose-dive towards the ground, signalling that she wanted to walk. I took her hands and she walked me down our long driveway and along the sidewalk to the end of our street where the girls were. The dad saw Kate coming and pointed her out. All of the girls scrambled to get to Kate. They bike, triked and scooted to Kate. One gave her multiple hugs; another walked beside her. Kate showed me that she just wanted to be one of the gang and they embraced her. All on their own. No adult intervention. I have a permanent mental picture in my head of the girls coming toward Kate. It was beautiful. And Kate just kept walking with them. It was the best walking I’ve ever seen/felt her do. She was motivated by these girls. These young ladies showed me that it will be OK. She can do this. She will go to school and she’ll love it. The kids will have her back. Thank you to my neighbourhood friends for showing me this. Tonight will forever be imprinted as a fantastic memory. Thank you for reminding me to never give up and to believe…to believe in my child…because she has what it takes!
On that note, I leave you with a great message from a blog I’ve recently started to follow: Momastery. And of course, a quick statement from one of my fav’s Kelle Hampton.
"I want my child to be accepted because she is a human being who deserves to be loved and respected." ~Kelle Hampton
1. June - Jamie takes the bus home from school and it would pass by the Kate's Kause park on the way home. He came home super excited one day when the diggers had started their excavating (thanks to Uncle Rick and Martin's Excavating!). He told me all about the big hole at the Kate's Kause park. I can just imagine him sitting on the bus and looking out the window at Gibson park and associating all of that wonder with his sister. What a great kid!
2. Jamie is always meeting people at the park. He enjoys seeing many of his school friends and neighbours each time he is there. He also likes meeting new people. I love how he tells us about his "friends" at the park. He calls everyone his friend. It's awesome.
3. July - The first time we took the kids to the park after the sod had been laid, we put Kate on the completed flooring and she went right into a bear walk stance. We had never seen her do it before. The playground encouraged her to do more right away.
4. Kate's favourite elements: roller slide, swings, omni spin (updated and accessible Merry-go-round). Jamie's favourite elements: everything. He is becoming more adventurous every time and looks for people to meet or kids he already knows every day. By August, he has mastered the challenging ladders of the 5-12 year old structure. It's awesome!
5. Inclusion and education for EVERYONE. By August, Kate could complete a circuit of the roller slide, which means she could continually do the roller slide over and over again because she can climb up the steps at the transfer station. Kate goes down the roller slide head first on her tummy ALL BY HERSELF. It's one of the most wonderful things I've ever seen. She'll do this for an entire hour and her father and I are never bored watching her. Kids we've never met before go down the roller slide with her. One girl even went on her tummy side by side Kate, both of them giggling the whole way down. This is inclusion and the feeling it gives us is better than I ever could have imagined. I love what the playground has done for our family and the community kids. We are all growing up together, no matter our differences. It's a small piece of heaven. How is it that a little town called Elmira is a leader in inclusion? It's because we have a great community.
No kind action ever stops with itself. One kind action leads to another. Good example is followed. A single act of kindness throws out roots in all directions, and the roots spring up and make new trees. The greatest work that kindness does to others is that it makes them kind themselves. ~ Amelia Earhart
It’s definitely time for a new blog post! We’ve had the most amazing spring as we watched our dream become a reality when the BEST playground for EVERYONE was built on June 23. I’d like to share some important memories.
We’ve had a pretty amazing year. In fact, since Kate’s diagnosis, I think my life has only gotten better. Kate has opened my eyes to many things. Right now, I certainly love the opportunity to view the world through her eyes. She puts out honesty, integrity, purity, and happiness everywhere she goes and so far, the world gives back. She’s amazed by the small things in our world that used to escape me. I have a renewed appreciation for our world and it’s helped to instil a passion to take good care of our Earth. I want it to be in good form for her all of her life. At the very least, Kate deserves the best our world can give her.
Obviously, Kate’s Kause has brought our family into public view. I can’t believe the amount of admiration and encouraging feedback I get from everyone who learns of our situation. People are overly complimentary of us. I still maintain that we/I am no different from any other parent who loves the pants off of their children! I just do what I can to give Kate, Jamie, and other children the life that they deserve. However, I am very appreciative of all of the honours I’ve received for 2011: Oktoberfest Woman of the Year in Community Service, KW Record’s 40 under 40, and University of Waterloo’s Faculty of Science 2011 Young Alumni.
Back on March 29th, I had the most amazing opportunity to speak at the 2012 Faculty of Science graduate reception. Even the President of UW came! I had the opportunity to make a quick speech to the graduates. My main message was that sometimes life can deal you a rough hand, but you can survive and make it OK. It was also the first time I could easily speak about the genetics of AS because my audience spoke the language so well! It was super cool! Afterward, my family and I had dinner with science faculty staff at The Keg (we give back after winning Thanks a Million last year!). It was such an empowering evening – I can’t believe that UW thinks this highly of me! It was so, so awesome. My favourite prof, Dr. Barb Moffatt, joined us as well. Such an unbelievable experience! Thank you to UW for reaching out and recognizing your graduates. Thank you to Bonnie for planning such an amazing evening. I will never forget it.
We had a wonderful experience of community and fellowship on Easter Weekend. LIfeSpring Christian Fellowship and Highview Community Church teamed to raise $8000 for Kate's Kause, enough to purchase the omnispin. We attended their concert, the Easter Story told to the music of U2, and their Easter Sunday event. We were overwhelmed with the support and interest from everyone involved. Kate even received an Easter bunny stuffy from the granddaughter of one of the pastors - she sleeps with it every night. We felt like we'd been enveloped in a big hug from this amazing group of people. At the end of their fundraiser, this group raised $17 000 for Kate's Kause, far surpassing their goal. Their effort speaks volumes. Thank you for your kindness, generosity and for reaching out to us.
As spring marched on, Kate’s sleep worsened. With her poor sleep, she wasn’t able to fight infections well. She was constantly sick from the end of April until the end of June. She even endured a fever that lasted over 4 weeks, on and off. The fevers brought on seizures, some of which were very quick. We now know Kate has tonic/clonic seizures with fever. It is horrible to witness her seize for something that most children face without adverse effects. Kate of course tolerated the whole thing like a champ. Sometimes I wish I was as resilient as my three-year old girl.
As June rolled around, we tried to juggle the end of the school year, Kate’s illnesses and seizures, and the culmination of 18 months of hard work. It probably wasn’t the best idea to build a playground in June, but it was really important to me. I thought it was fitting that the playground be completed around her birthday, June 21. We were lucky enough to secure the weekend of June 23rd for our community build. On June 23rd, 2010, Kate was tested for Angelman Syndrome. It was the worst day of my life. I have experienced a whole range of emotions and grieving since then, but I could feel it was time to replace a bad memory with a good one. Scratch that…a great one! Against all odds (weather, equipment, delivery, pre-construction labour), our community build went off without a glitch! I had over 75 people register to help us out. We lost count after 130. It was the greatest outpouring of love, support, encouragement, and community I have ever seen. It was a throw-back to a time when people really took care of each other. As my sister-in-law said, “it’s like Christmas morning but better!” because we were giving everyone, including ourselves, the best gift we could possibly give. Hands down, without a doubt, it was the best day of my life.
The playground is more than amazing. There are so many things Kate can do on it. She already has her favourites and she is never bored, never left on the side lines or in mom’s arms as before b/c it was too hard for me to manoeuvre her in a non-accessible playground. Kate tells us where she wants to go at the playground. The flooring gives her an independence that she’s never experienced before. Most importantly, the playground encourages her development because she’s watching other children and learning from them. Likewise, children are watching her too and learning from her. I can only hope that the playground will help make life at school and in social situations easier for both of my children.
There are some very key people I need to thank for everything they’ve done to see our dream come to fruition.
Thank you to our “community”. You are not defined by geographic region, you are defined by your love for our family and support for a worthy kause. Thank you for voting like crazy during Thanks a Million and Aviva in 2011. Everything you did help us win $85 000 in grant money. We are truly grateful. Our “community” is bigger than I know, so please share your Kate’s Kause story with me (kelly at kateskause dot com) so I can savour the amazing memories it has brought us all!
Thank you to my Angel family who also voted without hesitation and sent me countless messages of encouragement and support. We are separated by distance, but you would never know it! Your support on the list serve, Facebook and through email have done such wonderful things for my self preservation. A big thank you goes out to those families who made the trek to the Kate’s Kause Fun Fair in November 2011. It was so amazing to see so many people come together for our children.
Tony DeJongh of ABC recreation has fortunately (or maybe unfortunately for him!) become part of our “family”. He spent countless hours making our vision and dream come true. This isn’t just a job for him – he put his heart and soul into our project. He has been patience, supportive, knowledgeable, and encouraging no matter what we were faced with. Tony, we can’t thank you enough for joining us on this leg of our journey. We will never forget everything you did to make the entire experience so wonderful.
Uncle Rick Trapp of Emerald Homes Ltd has not only built us a fantastic accessible, unique home, but he also built us an amazing playground! Most importantly, he loves our kids so, so much. His knowledge and contacts in the construction community were crucial to our success. We couldn’t have done it without you, Uncle Rick! Thank you for participating in our project. We are so lucky to have you on our side.
My good friend and colleague, Tara Macey, has been on this journey with me as a mom from the very beginning. Tara’s second child is only 9 days older than Kate, so Tara and I were pregnant together and on maternity leave together. She helped me weather the unknown with weekly visits during the tough months while we were trying to decipher the cause of Kate’s delays. When you’re so immersed in your own life and issues, you often forget how it can affect other people. It must have been so, so hard on Tara to watch us suffer through the unknown, knowing that her daughter was doing fantastic and Kate was not. If she was troubled, she never let me see it. She was a rock of resilience and support that brought me through my darkest days. On top of all of that, she gave up so much free time to help with Kate’s Kause, even while she had other things to deal with herself. Her whole family became immediately supportive of our kause. She is truly selfless, driven, caring, and supportive. I’d be lost without you, Tara!
I have known Kim Templeton for over 20 years. We met in grade 8 and grew up together. Her children are close in age to mine. Her husband reminds me of Jeremy. Kim and James are our fierce and loyal friends. They grieved with us when Kate was tested and diagnosed. They have celebrated our triumphs and supported us when we suffered. Their continued love and support keep us going when things are tough. And to top it all off, Kim will do anything I ask to help out with Kate’s Kause! We are so lucky to have you, Templetons!
To our extended family, notably my Aunt Moe, cousins Sean and Kristin, and my Aunt Helen. Thank you for believing in us, supporting us through our worst times, and helping and attending as many Kate's Kause events as possible! It meant so much to us!
To our sisters and brothers, Ashley, Jenny, Joe, Karen and Kevin: thank you for rallying when we needed you most. Thank you for supporting my idea of Kate’s Kause without question. You immediately took up the torch and worked so hard to see our vision through. I know that countless hours have been spent by you working on Kate’s Kause. All of you have given love and support that have been crucial to our survival. You have exemplified the true definition of family. When disability can alienate some families, you chose to make sure that wasn’t so. Thank you for believing in us, for not giving up on us, and for loving our children the way you do. They are so lucky to have you all!
To Grandma and Grandpa/Terry and Fred/Mom and Dad: being raised in a family of girls, I never would have imagined that my in-laws would be so involved in our lives and love our kids as much as you. You both lead by example and have taken the role of grandparent to the next level. Without question, it is because of you that I have the best husband and my children have the best father. You have modeled and emanated the true role of parents. You are always there for us and always deliver. We know we can count on you and lean on you. Thank you for giving so much of yourselves to our lives. You make our job as parents easy. We couldn’t do this without you; we couldn’t survive without you. Thank you so, so much. We love you with every ounce of our being.
To Nana and Grandpa/Nancy and Mark/ Mom and Dad:
Mom, you taught me a long time ago that unconditional love is really the only kind of love that matters. You made me who I am. You gave me experiences that shaped my life. You supported me when no one else did. I now know what you’ve always said is true: no one ever loves you like your mother. I learned so much from you. I am so lucky that you are still such an important part of my life, of my family’s life, and even my dog’s life! You have been my rock for so long. I love you so much and know I can do anything with you by my side.
Dad, you told me a long time ago on a chair lift on Big Baby at Blue Mountain that you were “with me all the way, no matter where I go”. I think we may have been referring to some form of academic or athletic excellence (ha!), but I got the message loud and clear. After everything we’ve struggled through the last few years, you stuck by that promise. Thank you for never giving up, for rallying your colleagues to our kause, and for believing in me and our Kate. We wouldn’t have an amazing playground if you hadn’t taught me to DREAM BIG as a child. The playground is a direct reflection of your aspirations for me. This is what I was meant to do. I understand that now.
Finally, a heartfelt thank you to my two boys, Jeremy and Jamieson.
Jamie, you saved my life back in 2010. You inspired hope and showed me what true love looks like as you loved your sister in all her perfect glory, just the way she is. How is it that I learned so many life lessons from my 3 year old that year?!
Jeremy, you’re so amazing that it’s so hard to put it in words! I am so grateful to have you. You are the most dedicated father I know. I couldn’t do this with anyone else. You are the perfect match for me. I know this isn’t the life we thought we’d live…but I think, I really think, it might just be a bit better! Together, we will rock this disability thing. Every day I love you even more.
"Hope is a good thing, maybe the best of things, and no good thing ever dies" ~ The Shawshank Redemption
The new year has brought us amazing things so far. Kate's development is progressing at what seems like an accelerated rate (well, to us it's accelerated). Even when she was super sick with a fever of 41(yikes!) before March Break, she didn't let it slow her down. She's now picking up food with her hands, feeding herself, and holding things better than she ever has. She is climbing stairs on her hands and knees and crawling on all fours like there's no tomorrow. We are so confident that everything is in place for her - we just have to wait. Sheesh...that's really hard for me!
Today was a big day for the Angelman community. A clinical trial that will be funded by FAST has been announced and the 24 participants were notified today. Kate is too young to participate. The clinical trial involves an FDA approved medication that has relieved some of the AS symptoms in the AS mouse model. I've been hesitate to let myself get excited or hopeful. I want to be excited, nervous, anxious, and hopeful like the rest of the AS community, but I'm so, so scared. It's been 2 years since I realized something was "wrong" with my baby girl. This may seem silly, but I feel sick watching commercials of the "Believe" slogan from the Vancouver 2010 Olympics as it makes another appearance for the London 2012 games because it reminds me of the WORST time in my life (February and March seem to be hard obstacles to pass for me). And then there's our Kate, who shows me every day (without a drug or treatment) that life is not what I thought it would be at this point...it's actually WAY better. So I feel a whole crazy range of emotions right now and I cry at the smallest thing. I'm a bit of a mess. I think it's hard to be so newly diagnosed and hear this kind of "hopeful" news because I didn't think there was any hope at all back in 2010. I haven't spent much time following the research on AS. I've been so focused on Kate's development and getting her included b/c I've always felt that's the best way I can help her and give her the best life possible. In the early days of Kate's diagnosis, I remember snapping at my mom when she asked me sciencey questions, trying to understand gene therapy or possible treatments. I told her it would take YEARS for anything to happen and by that time, it would likely be too late for Kate. Mom actually asked me if there was a way to turn on the paternal UBE3A and I snapped back at her, telling her she was crazy and had blind faith and hope. Low and behold, 16 months after I said that to my mother, Dr. Philpot published in Nature (best academic journal ever...I could never get my stuff published in Nature) that he has activated paternal UBE3A in a mouse model of AS. I don't think I've ever been so wrong about something in my life...
So here we are...I'm afraid to be hopeful, but I know that I want Kate to reach her utmost and fullest potential and I will do whatever I can to make that happen.
I want to share one of my favourite blogs with you. It was sent to me back in the fateful summer of 2010 by a grade-school friend of mine. The blogger, Kelle Hampton, is also an amazing photographer, mother, and soon to be famous author when her memoir is published this April. She had some amazing things to say about March 21 (3-21: a Day to honour Down Syndrome). Kelle has inspired me to take my camera with me more often and take more pictures. I don't want to miss any beautiful moments. Permit yourself to read this post and look back at some of her other stuff. Her birth story for her daughter, Nella, will break your heart and then sew it back together even bigger than it was before! On Monday, Jeremy and the kids were at the park behind our house with Jenny and Aiden. As I crossed the field to see them, Jeremy had Kate on his shoulders and they were running toward me. I could see Jamie in the background playing with Aiden. Kate was laughing, making sounds of pure rapture and joy. I've never heard a more amazing sound. It made my heart soar. I'm sad I don't have a picture of this scene. It looked like heaven. I thought to myself: it's a beautiful day to be alive. Indeed, that is truly all that matters. This idea is so well reflected in Kelle's post. Read it. You'll feel so good afterwards. http://www.kellehampton.com/2012/03/3-21-2012.html
There are two primary choices in life: to accept conditions as they exist, or accept the responsibility for changing them. Denis Waitley
It has been WAY too long since I’ve written! We have been unbelievably busy...you know, with things like winning a grant from the AVIVA COMMUNITY FUND!!
On Saturday Nov 12th, Kate’s Kause hosted a Fun Fair and Benefit dance at Elmira Lion’s Hall. The Fun Fair was amazing. We had loads of kids from the community out to participate in the carnival games, BBQ, and bouncy castle action. We also had an overwhelming support of high school volunteers from Bluevale and EDSS. It was such an amazing day! To top it all off, we had 10 Angels from around Ontario attend this Fun Fair! It was so cool to have all of these families go out of their way to show their support and encouragement for Kate’s Kause.
The very next week, we got to meet the amazing crew from Shane’s Inspiration and Landscape Structures from whom we’ve won $10K in playground equipment and $50K in design and educational programming. We had a celebration announcement and some planning meetings, which will soon lead to the design of the BEST playground around! I absolutely love the mission of Shane’s Inspiration: fostering a bias free world for children with disabilities. We’ve decided on a Canadian animals/forest-type theme. It’s going to be such a unique playground, suited for EVERYONE’S needs! I know you’ll all be regular attendees!
On December 5th, Kate’s Kause entered into the semi-final round of the Aviva Community Fund (http://www.avivacommunityfund.org/ideas/acf10972). It was an amazing experience, one of the most memorable of the year, but it wasn’t without complications. On Nov 29th, our internet was accidently cancelled because of our upcoming move. Despite Jeremy’s persistent phone calls, we were unable to get our internet re-instated until close to the end of the Aviva semi-final voting. As a result, I streamed all of my FB updates, Twitters, and email reminders through the data plan on my phone! Two days before the semi-finals ended, Bluevale lost its access to its server. We easily lost 500 votes within a few short hours. However, after a short announcement at the end of the school day to rally our voters, our numbers started to climb. We had dropped down to 12th place by 4:00 pm, but quickly made a huge come-back to 9th that evening. I watched the vote count increase every hour that night, shocked at the out-pouring of support and involvement. This continued well into Dec 16th, the last day of voting. I got up with the kids that morning and brought the lab top over to the kitchen table. By 8:00 a.m., our numbers were jumping hundreds at a time. By 10:00 am, just in time for our western competitors to rise and shine, we were in 6th place!! UNBELIEVABLE! We finished in 8th place at noon with what had to be one of the biggest moves of the competition. I will always remember that feeling of pure elation that day brought: no matter what happened from that point forward, our voters, friends, family and community members showed us their support and encouragement. Thank you for voting for inclusion. We will never forget those moments. Thank you to Aviva for such an amazing opportunity.
Champions aren't made in the gyms. Champions are made from something they have deep inside them -- a desire, a dream, a vision. ~Muhummad Ali
Friday Dec 9th was moving day and we are now just about settled into our new place. It’s amazing. The kids are in heaven, as are we, and while it was so hard to leave our first family home, we are so content here. Life is good. The space is amazing for Kate’s development. She’s bumping off milestone’s like nobody’s business!!
On Monday Dec 12th, Kate attended the BCI Staff Kids’ Christmas party. She had a BLAST! She was completely involved and participated in many activities. She wrestled with the high school students, played and barfed in the bouncy castle (classy lady), and opened a present from Santa. It felt like Christmas came early for Jeremy and me. This is the only thing that matters to us – our kids are happy and included. It wasn’t obvious that Kate has a rare disability to all of the kids at the party. It didn’t even matter. She was just one of the gang, surrounded by people who love and care for her. She came home and had a bath in her new hydrotherapy tub and then crawled around up on her hands like it’s no big deal! It was the best crawling we’d ever seen her do. Inclusion works. Kate is living proof.
School went right up to December 23rd, which was a little tight for us since we’d just moved, but it provided for a wonderful, relaxing holiday. I picked up Jamie from the bus stop that day and told him he had 2 weeks at home. We had a great family dinner where we were able to reflect on all the amazing things that happened to us this year. Jamie is doing exceptionally well in school. He is improving in all areas and at an unbelievable rate. I’m so impressed by him. He also continues to be extremely sensitive about Kate. He’s constantly saying how cute she is, calling her his little sweetie or his princess. Sometimes I think about how much his life is affected by his sister. He handles it so, so well. I can only hope it stays this way – we’ll work really hard to be sure it does. When he’s a bit older, I will tell him how he was the one thing that kept me going in those dark days of fall 2009. He was Kate’s current age back then and already wise beyond his years. I couldn’t have survived if I didn’t have him.
I just read a really good commentary in the NY Times and it made me think A LOT about our life and our children. It's a tough read because it deals with a really sick child, but it has a great message. To me, it's the same message found in SARK's work posted above.
Just last week, I was driving home from work wondering what my life would be like without Kate. What if she had been born neurologically typical? Well, I would be a different person and now that I have the ability to speculate what that person would have been like, I don't know how much I would have liked her!! Seems silly, but what I have learned the most from Kate is life itself is special. I now fully understand the human experience. Even though I seem really busy, Kate has taught me to slow down. I now know how to breathe deeply and enjoy the moment. I have a full range of emotions that didn't exist before Kate. I am constantly saying to Jeremy that I wish we could pause time because our lives are so amazing and I don't want it to end! I've been saying that every month since June - that's got to be a good sign - time is going by and things just get better and better. I just love, love, love every moment that passes. Our family is so, so lucky to be together and have each other. I am just so appreciative of everything we have.
Jeremy and I were so lucky to attend a Notre Dame football game last weekend. We’ve been going there every year since 2002 – my Dad is a huge fan and my dear friend Brendan went to ND for law school. It’s always an amazing experience!
This year was no exception. Jeremy’s parents were so kind and took the kids for the entire weekend so we could have some time to ourselves. What an amazing feeling – only having to worry about yourself! It’s definitely a must for all parents, but especially parents dealing with disability. Anyway, at the end of the game, the ND marching band (oldest in USA college history) played their halftime show that was ruined by Mother Nature 2 weekends prior. They played Amazing Grace – and the entire crowd started singing. I tried to swallow a huge lump in my throat while Jeremy choked back tears. This song has new meaning for us now and here’s why:
Tonight I commented to Jeremy on Kate’s amazing progress. She is on a roll, her development soaring. She is crawling like crazy and can get in and out of sitting from any position with her nice flat, open hand to assist her! Anyone who knows her sees it and is stunned. We feel very fortunate that we are able to watch our child triumph over her affliction. It’s so exciting and super cool. Not everyone gets the chance to see something so amazing. Kate is, without a doubt, a miracle.
Jeremy agreed with me and responded back with some interesting perspective. He said that before Kate came along, he was blind. He was blind to the world and she has helped him to really SEE. And it’s a better world that we see now. It’s so true. I didn’t know what the world truly held in store for me until Kate. And no matter what happens with her development, I know that she has worked so hard to get this far and that in itself is a huge accomplishment.
Kate has had an amazing few weeks. She started preschool one morning a week. She has a resource aid, who is unbelievably great with her. I took some great advice and ideas from another Angel mom and I was so prepared for Kate’s first day. I created an “All about me” to hand out to parents and a Kate-wiki for her teachers. I gave them to the community living resource consultant and she was very positive about Kate entering the school system in the future. I felt FANTASTIC after seeing Kate integrate with the other two year olds. It was a sight for sore eyes. I gave the preschool teacher a tight hug with tears in my eyes and thanked her for taking my child. She so GETS it! Is it actually possible that other people will love and care for my child better than I ever thought possible? Yep, it’s more than possible, it’s probable! A week later, I was doing my co-op parental duty in the preschool class and got to see the most amazing site: Kate sitting at the snack table surrounded by the other kids, smiling away, waiting as patiently as she can for her food! It took my breath away.
This past Friday was Kate’s first morning without me there. I was anxious as I dropped her off, but she was in full playtime mode as soon as she arrived to class and wasn’t particularly fussed about me AT ALL! She came home with a finger painting she had done with her name printed neatly at the top. I have never seen a more beautiful piece of art. It makes all the adults in Kate’s life cry just to look at it. Jamie is so proud of his sister. As soon as I came home from work on Friday, he led me to the fridge and pointed out Kate’s “artwork”. He shows it to everyone. He knows what a big deal it is. He’s four and he GETS it too. My heart is swollen with pride and love for both of my children – I think it might just burst! I am ready for whatever lies ahead with the school system. I loved what I saw at preschool over the past 3 weeks: full inclusion. No exceptions. This is what I am after for my Kate. I won’t give up until Kate gets the educational experience she so deserves. She’s going to be awesome and other kids will benefit from her just as she will benefit from them.
"I love to see a young girl go out and grab the world by the lapels. Life's a bitch. You've got to go out and kick ass." ~ Maya Angelou
WOW, I can’t believe how unbelievably busy we’ve been since school let out! I have been neglecting my posts! Our July was amazing, filled with loads of trips to the cottage, tons of swimming, and a trip to Washington DC. Yes, we did a road trip with both of the kids and despite Kate’s battle with strep throat, it went really, really well. You can take a look at some of our photos on our Picasa site to see what we’ve been up to! http://picasaweb.google.com/macspo/
Kate and Jamie have both become independent swimmers in their own way. Kate has mastered her dollar store Disney Princess inner tube and kicks around on her front and back completely on her own! It’s super amazing…I never thought I’d reach this moment when I’d have a 4 year old and a 2 year old completely independent in the water! It’s so much more enjoyable for Jeremy and I in the water now. Jamie is a natural swimmer…he’s jumping in, jumping off of the boat, and swimming under and above water all on his own! It’s the coolest thing and he’s so proud of himself! He especially loves it when Kate cheers him on in the water – have I mentioned what a great big brother he is to her?!? :-)
Kate's doing really well right now. She was really sick with an amoxicillin-resistant strep throat for most of July, but as soon as we got her the right medication, she bounced back to her happy self! I felt like I hadn't seen her in 4 weeks - she's THAT much better! She is now so strong and so focused at learning new things. Her crawling is getting better, she's climbing all over things when she's on the floor, she is so close to pull to stand from sitting, and I can pretty much hold her hands and she'll walk with me. WALK. Whenever I doubt she's not going to be able to do it, I have to think of her holding my hands, focused to the point a little drool sneaks out, taking huge, giant knee-bending steps to propel herself to where she wants to go! IT'S SO COOL! Both of my children amaze me on a daily basis, but Kate does it on an entirely different level!
It’s now been a year since Kate’s official Angelman diagnosis. August 4th came and went just like any other day, but it was never the hard day that June 23rd is for us. When we got the call about Kate’s test results a year ago, the four of us sat on Kate’s mat, cried a bit, Jamie melted down, Kate fussed and then we went about the business of getting the kids’ hair cut. This year, I had a bit of a cry and took some time to reflect. I can’t believe how well Kate is doing one year later – in fact, I can’t believe how well we’re all doing one year later. Kate’s Kause has been a big part of our recovery and healing, but most of all, Kate herself has helped to heal us. A fellow Angel Mum once told me that with the AS diagnosis, there will always be a piece of my heart that’s broken forever, but Kate has repaired the bulk of the broken pieces with her killer smile and wicked personality.
Don’t get me wrong – disability is hard and we still and will always have really hard days, but those hard days make the good days fantastic. I feel like Kate has helped me discover and explore a whole new range of emotions I didn’t know existed before. I feel a deeper sadness but also a greater happiness. People are often complimentary of us and how well we handle our situation but we’re nothing special. We just do what most parents would do: love our child with every fibre of our being. We’re ordinary people living an extraordinary life. And for the most part, it’s really OK. Like I said on my FB page a while ago, Kate meets her challenges with grace, integrity, and a flare that’s all her own. I could never be so cool.
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.