We have had such an exciting weekend. I had a great night scrapbooking with some super wonderful friends on Friday and got to go to Collingwood with one of my best friends for her birthday. But exciting is probably not the right term for this weekend: earth-shattering is more like it! But before I get into it, I think I need to set the stage a bit.
We've had a rough year. It was around a year ago right now that it really set in for me that Kate was special, all the while my dog Cooper was undergoing chemo treatments for his hemangiosarcoma. As I researched and considered the myriad of disorders Kate could have, I felt like I was living in hell. It is a most terrible thing to worry about your child like this, wondering if they'll ever be some version of what we call "normal". Right now, we are about to face a whole series of first anniversaries (they are always the toughest) over the next few months as we approach the summer and the one year anniversary of Kate's diagnosis. It's hard. Sometimes people forget how hard it must be for us because, let's face it, right now Kate makes disability look good. And we make being the parents of a profoundly disabled child look not so bad. We function well and can put on a good smile for those around us, but rarely let anyone see how rough it is on a day-to-day basis. We still grieve the loss of what might have been. We know this will get easier with time, but some days are worse than others. Time is the best medicine...time, and of course lots and lots of love.
So this is why our little Katie Kate's newest accomplishment is more than just a milestone: it's earth-shattering! For those of you who missed it, please visit: http://www.youtube.com/watch?v=gC9odAQG-_Y. As Jeremy said to me tonight, it's actually life-changing. We feel like different people...like a different family...a more "normal" family with a baby who can crawl, except our crawler isn't a baby, she's a toddler who doesn't toddle. Can you imagine watching your child learn to crawl and describe it as earth-shattering or life-changing?!? Seems a bit crazy, but we've been waiting so long and Kate has worked so, so hard. It's so cool for her to crawl because it will help her to develop the right muscles required for walking. I know that full four-point crawling could still be months away, but I am delighted to say that we can't just leave Kate on her mat on her tummy anymore! She just might not stay there!
A good Angel mom friend once told me that I will grow to realize that Kate is a little trailblazer, here to change the world. That's starting to sink in. This is a little girl who doesn't know the word CAN'T and who will never, ever give up. She's the strongest person I know and is such a little fighter. It's ironic and bittersweet that my Mom embroidered TOUGH COOKIE on Kate's baby quilt to describe her when she was only 2 months old, but that's really who Kate is. She embodies everything that is pure, good, hopeful, and lovely in this world. And she's all ours!
Jamie is without a doubt the greatest big brother. On Friday night, he had the most amazing swimming lesson. His instructor is so great with him. He's got him swimming almost a full width of the pool. I had to stand up to get a better view of Jamie because I just couldn't believe it was my kid swimming like that! He too has so much to give to this world and Kate is helping to grow into the most sensitive and caring little guy. He is Kate's biggest cheerleader and protector. Just as my heart swelled with pride when Kate started army crawling, it grows even bigger when her brother shows just how much he loves her. What a stellar weekend for both kiddos!
I am nervous for tomorrow to come - perhaps that's why I don't want to go to bed yet - because we are seeing a developmental pediatrician at McMaster. I am wary of anyone who tries to pin point Kate's developmental age. It's not helpful - only hurtful. I don't want this appointment to bring me down from this amazing turning point we've had so I will be sure to dictate the tone of the appointment by starting off with our vision for Kate: we want her to live a complete and full-filling life, integrated into her community, doing things she likes best, and most importantly, surrounded by those she loves most. This vision is no different from any other parent.
OK I am off to bed. I will sleep well knowing my Kate is the most amazing girl I've ever seen, my son is unbelievably caring and loving, and Colin Firth won the Academy Award he so deserves. Sigh...all is right in this world. :-)
"Love constantly, instantly, spontaneously, without thought or words. Love is not something you think about, it is a state in which you dwell." -adapted from Christopher Moore's work of fiction, Lamb.
I always find it intriguing when people ask me what I do for a job. When I tell them I am a high school teacher, I get a lot of comments about how hard it must be to teach teenagers. This always surprises me. I LOVE, LOVE, LOVE my job. If I have to spend time away from my kids, I'm more than happy to spend it with the kids of Bluevale. Last night exemplified and reinforced this feeling for me.
Some hard working students and a wonderful teacher leader put on an amazing fashion show called Ciao Bella. I was just stunned by how wonderful they all looked. And it was all so well choreographed. These kids were naturals! Kate even got to make an appearance on stage! She went up on stage with a student who was in my grade 10 science class when I was pregnant with her 2 years ago. She was a star! They showed a slideshow we made of Kate that explains Angelman Syndrome and Kate's Kause. This was the first time I'd seen it on a big screen. While the young ladies who modeled during Kate's slideshow stood on stage and waited for their turn to walk, they all faced the slideshow screen and watched my baby girl. It was a powerful message and rocked me to my very core. I cried like a baby. I was unbelievably touched by the generosity and thoughtfulness of these students. I will never forget that night. I will never forget the many moments of happiness and hope I felt last night - I was surrounded by amazing supportive students, family and friends. It's nights like these that make me feel less alone on this journey. Thank you Ciao Bella directors, models, and volunteers...I am forever grateful. You've made a difference for so many kids by choosing us as your charity, but you also made a difference in my life. Thank you for reaching out.
I had a great first week back at work. I can't believe how quickly the time goes by. I LOVE being part-time. I LOVE my job and the people I work with. I LOVE having my mornings with the kids! It's fantastic! I am so lucky to work a job that allows me to do this. A big thank you to both Nana and Grandma for their help and efforts with our kids. The only reason I can even handle the idea of working is because I know my kids are in the best possible care. You two are amazing.
On my way home from work on Friday, I was rear-ended by an Audi A4. The Escape is not in good shape. You can see it on our Picasa web album: //picasaweb.google.com/macspo/February2011#. I am grateful to be here to take care of my kids, especially Kate, and forever thankful that they were not in the car. As I sat in my car after the accident and took the whole event in, I had a chance to compute what had happened. The Escape took a huge impact and I was pushed across two lanes of on-coming traffic. It was a miracle I wasn't hit by an on-coming car. As I said to the awesome tow truck driver, I needed to survive this accident in order to take care of my disabled daughter. My life feels so...significant? Validated? I don't know what the word is, but I realized in that moment that I've never wanted to live and be alive more than I did right then and there.
Anyway, Kate continues to do well with her forward movement on her tummy. I know she's doing things that would take a neuro-typical child only days to learn. She is probably still months and months away from a full crawl, but the fact she has the desire to move makes the world of difference! She is trying so hard and I know she'll figure it out. As a fellow Angel mom once told me, things will happen for Kate. She's just on Angel time instead of regular time. I think that's finally OK with me.
My last comment for today is something that bothered me when I was at Walmart this weekend. I was standing in line, reading the magazine covers (which I LOVE to do). One of the tabloids, I think it was STAR, caught my eye. I know the STAR is not reliable at all, but it's cover this week is about Brad and Angelina's twins or as the magazine called them: "Down Syndrome Twins". It showed Angelina on the cover with 2 small shots of the twins, completely blurry, and looking super tired. This bothers me on several levels:
1. As a scientist, I know the odds of FRATERNAL twins having Down Syndrome (exceptionally low). It is super unlikely that these twins have DS.
2. As a mom, I am pissed that a bad picture resulted in this cover.
3. As a mom of a special needs child, I am insulted and hurt.
I hope Brad and Angelina sue the pants off that magazine. This kind of stuff should not be published in such a terrible way.
Have a wonderful Valentines Day! I am excited to share heart day with my favourite people.
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.