What began as a regular visit to the food co-op today ended in the latest in a lifetime of lessons I’ll learn as a mother. We left Marley and Ncole in the co-op’s child care while we shopped. I leave Nicole there almost twice weekly when I’m shopping or working, and give the child care workers the same spiel about how she can’t go in the exersaucer, where they would normally put kids her age, because of her low muscle tone.
When I returned from shopping, a rather blunt child care worker immediately launched into a rant about how Nicole is too vulnerable to be left in child care. It seems she needed to be held the whole time so the bigger kids, who were throwing things around, wouldn’t hurt her. Carrying her for 20 minutes is a pain, I agree, but I did ask twice before I left if they could handle having a baby there (sometimes there are just too many kids and they say no).
I was insulted by the worker’s brash approach and felt Nicole was being dicriminated against because she isn’t able to do the same things other 9-month-olds can do. I’m determined to not allow her limitations to change how I will treat her, and I want her to experience all the normal things, like sometimes being separated from me and socializing with other kids.
You may not agree the worker was being discrimnatory. Obviously, I feel she was, but that’s sort of beside the point. The lesson I learned isn’t about about how Nicole will face much discrimination in her lifetime, but rather it’s about how I must learn to deal with it positively and teach my kids to deal with it that way, too. I fumed all the way home, then took a couple of deep breaths and decided to not let it ruin my day. It didn’t seem to bother Nicole, so I’ll try to take my cue from her.
Today is World Down Syndrome Day – a day to raise awarness of Down syndrome and to celebrate those we know who are affected by it. So, please take the time this week to tell everyone that you meet that you love and care about someone with Down syndrome. We all benefit from a little less ignorance and better understanding. Thanks!
When we first learned our daughter Nicole had Trisomy 21, commonly known as Down syndrome, David’s sister found this great document called If People with Down Syndrome Ruled the World. It’s worth reading or re-reading on a day like today.
I recently connected with a mom of a two-and-a-half year old boy with Down syndrome. She commented on how “together” I seem for a mom who’s only 6 months into my new, forever-changed life. It’s not the first time I’ve heard this and it made me wonder if maybe I’m dealing with all our changes a little too well and I’m in for a major meltdown.
I don’t think so. I’ll tell you why.
Firstly, thanks for the compliments, but I truly believe that had any of you found yourselves in the same position, you would have dealt with it the same way. We love our children unconditionally, no matter how they’re packaged.
Secondly, I’m beginning to recognize that I possess what my sister Teri calls the “McMahon denial gene”, which allows us to take what life throws us and simply deal with it. Healthy? I’m not sure, but it keeps me happy.
Today, Nicole pulled herself up with her abdominal muscles while sitting in the swing. A small feat for many, but a major achievement for a baby with low muscle tone. Of course, I’m proud of both my kids every day, but when I saw her do that, I felt a pride I didn’t know I’d ever feel.
Nicole’s allowed me to feel new depths of emotion I would never have felt if it wasn’t for her special needs. How amazing is that? I may be in denial, but I like it in here.
What’s your destination? We don’t always know. If you’d asked us a year ago where we’d be living, we wouldn’t have even thought of New York City. If you’d told us we’d have a child with Down syndrome, we’d be in disbelief. But bring those two together and it really starts to make sense.
Recently, I was “back home” in Toronto giving a workshop at an industry conference. It felt so comfortable being on familiar turf. As much as we love New York, there’s nothing like walking the streets of a friendly city where you know how to find practically anything you might need.
Interestingly enough though, it seems that New York is the place where we can find exactly what we need right now. As those of you reading this blog know, Nicole has started both speech and physiotherapy. She gets physio three times a week and speech twice a week for a total of five sessions. We wanted more but we take what we can get, especially when it’s covered by subsidized government programs. According to someone I met in Toronto though, this level of public health service is unheard of for most patients. We’d be lucky if we had one session once a week. Combine that with the fact that the therapists come to us, and we quickly start to realize how the turn our lives took was meant to be. Really.
We can’t explain it. But there are some kind souls and spirits looking out for us and guiding our way. Needless to say we are grateful.
Heading home for the holidays will be so much fun. We leave in just over a week. Coming back will be difficult, but knowing that this is where we’re meant to be at this point in our lives gives us a bit more clarity and drive.
Thank you to everyone who’s been thinking of us and continually sending us your good thoughts. It’s working. And we’re working hard to create as much opportunity as we can for our daughter, Nicole. And there’s no better place than New York City right now.
Today is our first Thanksgiving in the U.S. It is the biggest holiday of the year and it is also the day that Santa Claus arrives in town to kick off the holiday season. Marley was pretty excited to see him on TV in the Macy’s Thanksgiving Day Parade. If you ask her when he’s coming, she says “later”. She also describes Santa as “scary”. We may not get a picture of her with Santa this year, but if she sees Nicole go for a photo, maybe she’ll follow.
We’re enjoying a visit with Marley and Nicole’s Gramma and Grampa. It has been great having them here for the last week and we’re lucky to have them here for a few more days. A beautiful turkey is on the menu tonight and we’re watching the NFL games on TV this afternoon. It’s really nice to have a day off. Things are pretty busy but they seem less hectic when we’re all together. The only challenge today is the weather. It’s a little wet which means Marley can’t get up to the playground without getting soaked, so we’re staying indoors. We’ll have to tackle some arts and crafts after nap time.
Nicole has started her early intervention therapy. She is scheduled to have speech and physical therapy. She’s already started her speech therapy. We’re all learning what we can do to help her strengthen the low muscle tone in and around her mouth. This will ensure that she gets speaking sooner than she would without therapy. We’ve been really impressed with the early intervention program provided by the state. Our program coordinators at TLC have been really supportive and very interested in working with Nicole. We like to think that it’s because they see great potential. It must be amazing to work with an infant and see their progress in time. This experience really makes us realize how much we all take for granted.