Wednesday, August 29, 2007


This piece was written by Mendelt, Marisa's husband, on their blog, Life. I loved it and have stolen it, and with permission, am posting it here. I've made a few changes to make this my own. Those changes are in [brackets].

I am imagining along with them - for both of us. I imagine for my friend Meta as well who is a wonderful, compassionate woman who works with individuals with developmental disabilities.

I imagine...and pray... and trust.

Hallelujah! Hallelujah! Hallelujah!

Imagine there was a young wonderful mother of three [two] who led a good, kingdom furthering life and then cancer hit her, her family and those who love her?

Imagine that her family, friends, and church stormed the doors of heaven with prayers so that somehow this beautiful woman could live to see her kids grow old?

Imagine the much hopeful news about the growth of the cancer, the CT scans, the nuclear medicine tests didn’t reveal good news?

Imagine then after almost all hope was gone, after more than 8 [20] months of sickness, fatigue, frustration and against-the-odds-positive-attitude, after the laws of science and medicine were turned on their head, after the oncologists said that this was the last medical chance for healing, it was revealed that the cancer was gone?

Imagine then that God and Jesus were talking over a cup of tea (surely they wouldn’t drink coffee) about this inspirational servant that they spared only to see that the good work that was begun in this woman would be carried out until completion?

And that, because of the good work that could continue, it would send a ripple of hallelujah’s throughout the land that would resonate with those who really need to hear it?

Imagine? I am.

Tuesday, August 28, 2007

School's almost IN

I cannot believe our summer is almost over and that school starts in one week. Where did the summer go? I know adults always say this, but even Kurtis said this the other day. Last nigght, Kurtis and I went shopping for school supplies - backpacks, pencil cases, pencils etc etc. He's at the age now where he actually cares a bit about what I buy - so he's gotta come with me! Ryan could care less right now, so he's very easy to buy for. The shopping is the easy part. ( seems I forgot about shoe shopping this afternoon. That definitely was NOT easy. Two tired and cranky children...combined with measuring feet and buying two pairs of shoes each does not make for a wonderful, happy shopping experience).

What's not easy is the (little bit of) worry I am experiencing about Ryan entering GRADE ONE! I cannot believe my little guy is already in "real" school. Tom and I debated about holding Ryan back - but after discussion with various people in Ryan's school life (ie. teacher, EA), we decided to put him in grade one. If it is too much, we can always hold him back and have him repeat grade one next year. In any event, he's going! There's so much worry in my head:
- will going to school all day, every day, be too much for him? I wonder if it will tire him out too much. And Ryan's not exactly overly cooperative when he's tired. In fact, the more tired he is, the more active and "busy" he becomes. It's almost as if he feels that if he stops for one minute, he'll fall asleep - so he CAN'T STOP.
- how much curriculum adaptation will we have to do? I know that we will have to do some, but how much and how are we going to do it? We haven't had to do any curriculum adaption yet, so this will be a learning experience for us. In the school system, the IEP (Individual Education Plan) isn't actually finalized until late October (give or take a few weeks), but I want to be "on top" of things starting right in September so I know I'll have to work with the teacher quickly and meet with her early in September.
- how will his new EA interact with him? Ryan has a new EA this year. He has had the same EA for the past two years and we're going to miss her a lot. But I also think it'll be good for Ryan to have a change. But Ryan is very good at challenging someone new - so I'm worried that we will see a lot of negative behaviour in the first few weeks.
- how will his new teacher interact with him? Thankfully, the teacher already knows Ryan as she was Kurtis's grade one teacher. She also has had a student with Down syndrome in her class. So I know that there won't be any major issues like some people encounter. But there's still always some worry in the back of my mind about how they will interact. I am working on writing something up that describes Ryan, his strengths and challenges, how to best work with Ryan, and our ultimate vision for him. This is a LOT of work and I haven't done much on it yet.
This is one of the things about having a child with a disability that I DON'T like. I can honestly say that there aren't too many things that bother me about having a child with a disability. This is one of them. Learning how to manoeuvre within the school "system" is hard work - and a lot of it. It ticks me off that so much of this ends up falling on the parents' shoulders. I know teachers and others in the school system work hard - and for the most part, I have been very happy with the people we've had to work for (no horror stories like some other people have had) and they have been good for Ryan. But it still bugs me that the parents really need to keep on top of it or it can fall by the wayside or not be appropriate for your child or just not done. You really need to learn to advocate for your child. And one thing you learn: not to be shy. You really need to stick up for your child because no one else will. And honestly, I'm lazy. Like everyone else, I'd rather not have to learn the in's and out's of the special education act. I'd rather not have to learn how to adapt curriculum so that it's useful for my child. I'd rather not have to learn how to complete IEPs. Enough about this. And as Tom says, don't worry - it'll all work out OK, it usually does!

As promised.... PICTURES!

Ok.. I'm a bit late, but here are some pics from our cottage (cabin) week. I actually didn't end up with too many pictures... so here's just a few from what I have.

Kurtis and Tom did a lot of fishing together. Although they didn't manage to get us a fish'n'chips dinner, they did manage to impress the kids at the cottages!

Connor, Kurtis, Ryan and Sarah show their nice (but very sandy) side.... and then their silly side. I do think the silly side was 95% out on this holiday!

More fishin' pics:
Aren't cousins great? (you can all ooh and aah right now about how cute they all look in their lifejackets)

Thank goodness for the DVD on the computer. It really kept Ryan occupied when he needed to stay inside the cottage.

Thursday, August 23, 2007

Update - Aug 23/07

Ok... now that I've finally cleaned out my 980 emails, I can finally get to my blog! Seriously, I did have nearly 1,000 emails in my account. How does that happen, you ask.... I am on a few groups for people with sarcoma and they've been a chatty bunch lately. I'm also on a few groups related to Down syndrome. The emails add up quickly that way. And I got behind a while ago and then when I was gone to the cottage I got seriously behind. Anyways... that chore is now done.

I started my vitamin C therapy a few weeks ago and just had my 3rd treatment today. I've connected with a naturopathic doctor that I really like and trust. He was a medical doctor in the past so he has a lot of experience and knowledge from that point of view. My blood work showed significant deficiences in many areas. I guess this isn't surprising as I went through 16 months of chemotherapy and it would have worked some damage in that area as well. So I have to take a few supplements to help get myself back to normal. The vitamin C treatments have been fairly uneventful. They hook me up to an i.v. via my port-a-cath (I am sooooo happy I chose to get the port. It makes life re: i.v.'s soooo easy - especially when your veins are as horrible as mine are). Then I read and rest for the next hour and a half or so. The two nurses there are wonderful - they make sure I am comfortable and have everything I need (drinks, blankets, warm bean bags, reading material, etc). So far I'm not feeling anything from the vitamin C - either good or bad. I'll keep you posted!

We had a good week at the cottage last week. I'll be editing this post to include some pictures from our week. I found the week to be a great way to recharge my batteries. I even managed to read the latest Harry Potter book! Too bad we could only stay one week.

That's all for now folks.

Saturday, August 04, 2007

Life in pictures

I haven't been a very good blogger lately. We have been so busy this summer and we are really enjoying every minute of it (despite everything else)! We've been spending alot of time in various pools and lakes - the boys are turning into fish! Seriously, though, we have had a great time visiting with current friends, reconnecting with cousins I haven't seen in years, having fun at various pool parties and generally enjoying the beautiful sunny weather.

So, in lieu of posts, here are some pictures from the past month:

First of all... my silly boys!

Enjoying the new boat and swimming off the dock:

Visiting friends in Indiana:
Ryan adores dogs of all shapes and sizes. If there is a dog to be found, Ryan is usually not too far off. So, Ryan had a lot of fun with our friends' 3 dogs. This picture is almost enough to make me want to get a dog. ALMOST...but not quite.

Spending the day at African Lion Safari:

At the beach in Grand Bend:

I think this one's true!

I did this "quiz" a long time ago... and I think it actually came out quite accurate! Sometimes I think I'm a pessimist, because I can see what can go wrong in a situation, but yet I always seem to expect the best out of everything - people, a new job, a new class/sport/activity for my kids etc etc. So, I guess that does make me a realist.

You Are a Realist

You don't see the glass as half empty or half full. You see what's exactly in the glass.
You never try to make a bad situation seem better than it is...
But you also never sabotage any good things you have going on.
You are brutally honest in your assessments of situations - and this always seems to help you cope.