Tuesday, June 19, 2007

I've discovered something the scientists haven't!!

I have discovered that the gene for hugging is on the 21st chromosome. Actually, I have a feeling I'm not the first to discover it. Probably many parents of children with Down syndrome have discovered this.

Anyone who has met Ryan knows that he LOVES to hug. And, at school the other day, I noticed my friend's little girl, Grace, hugging another parent as well. It seems that the duplication of gene 21 in the Down syndrome chromosomal make-up has also doubled the urge to hug.

Now, personally, I love it. Ryan gives the best hugs ever. And don't ever tell Kurtis this, but he really does give better hugs than other kids. I think it has to do with the low muscle tone that many kids with DS have - their bodies just seem to melt into yours and it is one of the most delicious things in the world.

Ryan loves to hug - me, his Dad, his brother, his grandparents, his cousins, aunts and uncles, his teachers, his classmates, a perfect stranger off the street.... I think you get the picture. Most of the hugging is OK. But we are trying to get him to stop hugging perfect and almost strangers. It is unfortunate, but today's society dictates this need. It would be a wonderful world where it was acceptable for Ryan to hug everyone he saw - I truly believe our world would be much better off if everyone practiced this behaviour. But, unfortunately, we don't live in utopia. We live in a world where there are scary people and people who will take advantage of Ryan's loving nature. So, we have to teach him that it is inappropriate to hug people other than those in his family and his "circle of friends".

The other day, at soccer practice, he ran off the field to a gentleman with a beard and gave him a hug and sat on his lap (he loves beards and loves to run his fingers through the beard). I quickly ran over and pulled Ryan off with a quick word about how we only hug people we know and not strangers. The man's wife was very quick to say it's OK and that they don't mind at all. Most people say that - they don't mind... in fact, I think they rather enjoy having a cute little boy come over and hug them. But when I replied that it is cute now, but it won't be cute in the future when he hugs strangers, the woman was quite quick to agree with me and I think she quickly realized the inherent danger in this behaviour.

So, once again, I am struck by the beauty that people with Down syndrome seem to carry around with them. And I am deeply saddened that I have to teach my son that it is NOT OK to hug that woman with the dog that we met walking on the street. Honestly, she did look so much happier afterwards. But, we will continue to do this for Ryan's safety. And, once again, if I could bottle this affection and love, I'd be a millionaire!


Great video on Youtube. It was produced by the National Down Syndrome Society in the U.S.


Monday, June 11, 2007

What a wonderful day!

One thing about going through chemo... you are VERY grateful for a day that arrives where you are feeling good and energetic, where the weather is just perfect, where you have nothing else on your plate and where your husband has no appointments. That day was Sunday. So I woke up and was determined that our family was going to do something together, outdoors, somewhere.

So we ended up at Ontario Place for the day. I must admit I was a bit disappointed with the place at first. Perhaps that comes from spending 7 days at Disney World with all the amazing stuff they have there. And Ontario Place is not really a ride place - and it is generally designed for the younger crowd. But, despite my disappointment when we first arrived, the kids had an AMAZING time! I had to drag them away from the first two "attractions" (the outdoor climbing structure and the indoor ball blaster) by convincing them there were other amazing things waiting for them! So, overall, I was happy with Ontario Place, especially when you consider the price compared to Disney!

We had told the kids we wouldn't have time for the water park and they were OK with that (but mostly, it was a concern about safety issues and Ryan).... but I did take their bathing suits, and after seeing how we could easily keep an eye on Ryan, we surprised them by letting them play in the water park. They had so much fun there and Kurtis was brave enough to go down the waterslides by himself (he just went down the one with 4+ people and merged himself in with other groups - not a shy bone in this kid's body!)

We wrapped the day up with a wonderful dinner at a good restaurant. Needless to say, we were ALL exhausted by the end of the day. (We were all still exhausted the next day too! LOL)

Any recommendations for a camera?

My camera has officially had it. It has this amazing ability to stop working at the most important moments. I have one picture of Ryan's Special Olympics as it would not work. This camera has had two visits to the repair shop already. I am going to bring it in for #3 - if they give me a replacement camera, then I'll take whatever they give me (a salesclerk at the store told me they might give me a replacement camera as this is repair#3 under the same warranty period). BUT... if they don't give me a replacement, I'm buying a new camera - even if they try to fix this one (it obviously hasn't worked before).

So... I'm looking for recommendations for a digital camera. No SLRs here... just want an easy to use digital camera with a fairly large view screen. Right now I have a Canon Powershot A60 and I do like it (in spite of the problems). It's easy to use and the pictures I get from it are clear and bright. But if you're passionate about your camera, let me know.... I'll check it out!

My goodwill ambassador

Ryan is such a happy boy and he greats everyone he meets with great enthusiasm. It doesn't matter if you're a stranger or not - he loves everyone and greats everyone with an enthusiastic "HI" and a hug. (We're working on not hugging strangers.... cute as it is right now, it's not exactly a safe thing to do, is it....)

Today, as we're driving through town, Ryan had the window down by his seat - and greeting everyone from there! He had to say hi to the woman at the drive-through window as I'm getting my French vanilla capaccino at Tim's. He said hi to the people stopped beside us at a stop light. Then, in the stores, he is all smiles and hellos for the sales staff... it makes it really hard to discipline him as octopus boy is grabbing everything in sight. How do you put him in a time-out when the sales staff is just grinning with him and chatting with him?? But, as usual, I have to smile at the reactions he gets. Everyone says hi and ends up with a great smile on their faces. I'm positive that their days were just a bit brighter after having this little boy come into their lives for a short time.

My goodwill ambassador. Is there anyway to bottle that sunshine that he brings? If so, I'd be a millionaire right now.

Friday, June 08, 2007

What a difference a day makes!

Wow... I am feeling soooo much better than yesterday. It usually happens like this.... overnight, I can feel my body change and then the next day I'm pretty much back to normal (not quite, but close). Thank goodness, too, because today was a busy day. I could have imposed on my mother-in-law, but honestly, I think she's had a busy enough 10 days without adding one more on.

Today was a PD day and consisted of bringing Ryan to swimming lessons, a quick shopping expedition for a 6-year old girl, lunch out with the boys and my Dad (thanks for coming to visit Dad, it was great to see you!!), then taking Ryan to the 6-year old's birthday party at a glow-in-the-dark mini golf. And right now, I'm glad to say I'm not totally exhausted - in fact, I'm still feeling quite good!

Wednesday, June 06, 2007


This round of chemo was another tough one. Not so much in terms of nausea (no anticipatory nausea - YEAH!), but in terms of fatigue. The level of exhaustion has been incredible this time. I slept an easy 15-16 hours at a stretch...getting up (forcing myself up because my back was getting sore from lying down that long) only to fall asleep again in the lazy-boy chair. And my energy seems to be taking a long time to come back. It's day 9 now and I'm still quite fatigued. Although I'm sleeping fairly normal amounts.... I just can't DO anything! As you can guess I'm getting a bit frustrated. I'm trying to go with the flow, knowing that you can't fight it and just have to let nature take its course, but sometimes frustration does seep through.

Thank God for my mother-in-law - I don't know what we would do without her.... picking the kids up after school, feeding them dinner, taking Ryan on off-school days, taking the kids to various appointments, etc. Thank you Oma!

So, I'm off to REST and watch some more TV. I'm watching lots of talk shows (yuck), cooking shows, CSI and other bad TV (Kurtis loves "Smarter than a 5th grader" and "Deal or no deal" - oh well, what are you gonna do?) at night. Most TV really is inane, isn't it? But it keeps me occupied and I don't have to think too much - good things when you're really tired.

Thank you again for your comments, emails and prayers. Keep them coming!