Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.
Dorothy Thompson
Today Bennett went to Auntie Bonnie's for a birthday lunch for his Mummu and Auntie Kerry. As usual the food was spectacular and the company even better. Bennett had a great time entertaining everyone. He even managed to make a brand new best friend - Sister Gert! These two had a great time together and I'm sure would've gotten into all kinds of trouble if there hadn't been so many of us around.
He also got to spend some time with his Auntie Bean and Uncle Glen - the newlyweds of the family! I'm sorry the picture is a bit blurry but I still love it.
And finally, here's a little video of Bennett and Sister Gert in action....
Last but not least, Happy Birthday to Auntie Kerry who was feeling a bit under the weather today - hence no pictures of her. We hope you have a great day!
With lips like that who needs Botox? Or maybe that's collagen - do people use Botox for wrinkles? Shows what I know I guess but this is coming from a woman who has never worn make-up in her life. My biggest beauty investment is a tube of Blistex.
Anyway, regardless of what people use Botox for it turns out that Bennett doesn't need it. We had an assessment done today. Botox has been used for a number of years to treat people with cerebral palsy. From my research, it appears to be a mixed bag as far as results go. Some people have reported tremendous success while others have found it to be of no help at all.
Using Botox to treat cerebral palsy, especially when it's your child, is a big decision. After all it is a poison and can be dangerous and not without side effects. Recently there have been more concerns brought up in both Canada and the United States. Apparently there have been a number of deaths linked with Botox as a treatment for CP - especially in children. Granted the numbers are small, but death is a serious side effect. You can read more about the investigation in Canada here and the investigation in the U.S. here.
If the doctor had recommended Bennett have Botox treatment, Jim and I would have considered it and probably would have tried it. As it turns out we were lucky in that the doctor doesn't think he needs it at all at this point. They will re-evaluate in 6 months. Other than that our appointment was unremarkable although the doctor was extremely intrigued by Bennett's gait. He says he has never seen anything like it before and it's definitely not typical of kids with hemiplegia. So, what does that mean? I have absolutely no idea but I'm not going to worry about it right now.
A couple weeks ago I went to Starbucks for the first time. I do drink coffee but not that often and when I do I usually go to Tim Horton’s which is a Canadian coffee chain that inspires unbelievable loyalty and devotion. So much so that many people have argued that they put “something” in their coffee that causes addiction. Anyway, before I veer off topic anymore, I was talking about my first visit to Starbucks. I stood in line nervously as I stared at the “menu’ trying to decide what to order. I have no idea about all this coffee stuff – lattes, mocha, skinny, soy, tall, grande, cappuccino, frappuccino. I heard people ordering with words I’ve never heard before. More than once I contemplated just leaving but was desperate for a caffeine fix. I looked around to determine whether anyone looked friendly enough for me to ask for advice. As I studied their intent faces, I quickly decided no. Besides I was way too embarrassed to ask for help. I settled on a café mocha and that’s what I ordered. It was quite good and I’ve been back to Starbucks a couple more times but still have never worked up the nerve to ask anyone what all those other coffees are.
Now why on earth have I told you that story? It wasn’t just to demonstrate how incredibly uncool I am. Instead it was because it has led me to think more about something that I’ve been worrying about since Bennett’s diagnosis. I think a lot of us worry about fitting in. Learning how to fit in can be an important skill in our society. We need to know things like what kind of behaviour is acceptable, manners, etc. Growing up it can become very important. As a child I was lucky in that I was a good student and a good athlete and never had too many problems fitting in. As I got older fitting in mattered less but as was revealed in the coffee story, it obviously still matters to me a bit.
Growing up is difficult and I think we can all agree that as wonderful as they are, children can sometimes be the cruelest creatures on earth. Ellen over at To the Max has had some great posts about this. I worry that Bennett may be picked on because he’s different – maybe he’ll have difficultly making friends. Most of the time I have a hard time believing this because he’s just such a happy, fun, and good-natured kid that I think anyone who didn’t love him would have to be crazy. But I know life can be difficult for kids that have anything that makes them “different” whether it is freckles or crooked teeth or cerebral palsy - despite great results from studies like this one. Erin, a wonderful young writer has written many poignant blog posts about what life is like for a teen with CP. It’s not easy.
So, I worry about what life will be like for Bennett. I am a mother and apparently mothers are masters of worry. I do remind myself that I’m probably worrying for nothing. Bennett will find his own way. He will have difficult moments as every child has. But hopefully I can help him learn from these incidents and help instill in him the confidence to be his own person with his own mind. Somehow I need to find the courage myself to teach him a lesson that I’m obviously still struggling to learn -the lesson that life should be more about standing out than fitting in.
Today marks the one year anniversary of the start of this blog. When I began I didn't know if I would like it or how long it would last. I started the blog as a way to keep friends and family up to date about Bennett's progress. I also knew that it would provide a way of journaling that would let me mark the milestones in Bennett's life.
I must say that I have really enjoyed doing the blog and I have really enjoyed reading and hearing the comments whether they appear online or by email, phone or in person. They have been such an incredible source of love and support for my entire family. Through this blog I have made many online friendships. I've become "addicted" to their blogs as I follow along with their lives and the wonderful accomplishments of their children.
I have every intention of continuing with the blog as I have a lot to say and Bennett has a lot to do! I hope all of you will keep reading and commenting. I hope that any new readers will find our story interesting as well as a source of hope. As I said in my first post, blogs are where I first found hope after Bennett's diagnosis. That was such a dark time in our lives but we have certainly learned that not only does life go on, it can be wonderful again.
In Ontario today is Family Day. I think it's the second year for this new legislated holiday. Jim was home from work so here are some images from our day...
After dragging Jim's shirt around the house he wanted to wear it. It fits nicely don't you think? Although he does look a bit like a little monk.
Bennett then had great fun trying on my bra. He tried it on his back, his head, his chest and then he got tired of it and stuffed it under the bookcase. Jim thinks he was just practicing how to take them off in the future.
We then spent about 20 minutes getting Bennett ready to go to a sliding party. Once he got there he was pretty tired and not that interested in sliding. Since it was close to nap time we came home early.
After his nap he was a bit more chipper and practiced walking up and down my monster ramp all by himself. A wonderful accomplishment!! Yes my Christmas stuff is still up - I don't want to talk about it...or at least Jim doesn't.
And finally for the big finish - Bennett had a pee in his potty before his bath tonight! It was a complete and total coincidence but hey, we have to start somewhere right?
Addiction - it is a horrible thing and usually not something to laugh at but let's try anyway - at Bennett's expense!
Like most toddlers (correct me if I'm wrong) Bennett has developed a few "addictions". It's amazing how when kids really like something, that's all they want - again and again - day after day.
Bennett has become addicted to Minigo yogurts. He has always liked yogurt but now that I've taught him a sign for yogurt he asks for it constantly. It's all he wants for breakfast and I'm really lucky if I can get some other food into him before he asks for it at other meal times.
Another addiction is ketchup - he loves it. In fact I'm surprised he doesn't ask to have it squirted on his yogurt! Shhhh...please don't mention it to him. That's a combination that I just could not stomach! Some of the stranger things that he has had ketchup on include spaghetti, macaroni salad and bread.
While Jim and I were on vacation we stopped one day and watched some kids singing and dancing to a catchy little tune that I had never heard before. Jim and I ended up singing it all week so when I got home I thought it would be fun to look it up and show it to Bennett. Big mistake on my part as I can no longer sit at my computer without him demanding to watch the video - again and again and again...
So those are some of Bennett's "addictions". What about your kids - what are they crazy about and does it drive you crazy? Please tell me I'm not alone. I guess I should just be happy that it's not tequila and cigars...
Oh...and just for your viewing pleasure, since I have the link bookmarked, here is the music video. Watch at your own risk....
Well, we made it back. Over the years we have travelled a lot. I love planning a trip and going on a trip but my favourite part has always been coming home. I love my frosty home and would never live anywhere else. We had a great trip but missed Bennett desperately. I think he missed us too - he's been pretty snuggly all weekend and full of smiles. I've also missed reading all my favourite blogs - I hope to get caught up with all of you soon.
We had great weather in the Dominican - it was hot and sunny every day except for the last. We went on an excursion offered by our tour company. At one point I mentioned to the guide that many people who live in a cold climate often dream of going someplace warm. I asked him if when it's really hot he dreamed of going somewhere cold. He looked at me like I had lost my mind and said "No -never". Hmmm...there goes that theory.
In keeping with the theme that has dominated my life for the last 2.5 years, there was also a bit of drama when we got home late Friday afternoon. It did not take long to discover that our sump line and our septic line were frozen. The septic line promptly exploded when we flushed the toilet. That night, we re-packed some stuff and took Bennett to a local hotel. On the Saturday morning, Uncle Austin, the family fix-it guy came out and helped Jim repair the problems. In the grand scheme of things, it wasn't the end of the world but it would have been nice if it hadn't happened. No one could ever argue that my life is boring.
I made a video of our vacation photos. I've tried to make it as entertaining as possible. Enjoy...
My name is Barbara and I'm mommy to Bennett and Murphy and wife to Jim. Bennett has cerebral palsy - more specifically, right sided hemiplegia. This blog will follow Bennett's progress and our lives.
