Friday, July 27, 2007

Yeah for Walgreens!

This circulated the Down syndrome "community" a while ago, but I'm just getting caught up on things. Next time I'm in the U.S., I'm going to shop at Walgreens!

One of the things that has worried me about Ryan becoming an adult is him finding "real" work. I don't care what kind of work he does, but I want him to find something that he enjoys and where he feels useful and that he is contributing (actually, that's no different than what most parents wish for any of their children, now is it?). People with developmental disabilities have a very difficult time finding jobs - and this isn't always because of their ability (and as an aside, it's not just people with developmental disabilities. People with other disabilities - i.e. physical disabilities, hearing or visual impairments - are underemployed as well). Often it can be because of discrimination. Often it can be that the employer is worried about what the person will or will not do and won't give the individual a chance to prove themselves. Or it may be that the employer is unwilling to make the few accommodations necessary for that individual to hold the job. In any case, I know how hard it is going to be for Ryan to find a job when he becomes an adult. We are fortunate in our case that there is always the family business to fall back on. Tom often remarks about the various jobs that Ryan will do when he grows up. But, as I remark back to Tom, what if he doesn't want to work for you?? So, finally, kudos to Walgreens for employing so many people with disabilities. I hope many employers see this and make a telephone call to the President of Walgreens to see how to do it at their company!

Tuesday, July 24, 2007

Love for Parker

Parker is an adorable little boy with Down syndrome who has been dealing with a ton of medical issues and has gone through a lot in his short life. He has pulmonary hypertension, heart problems and requires many other special medical devices. Because of his medical issues, he is extremely susceptible to getting sick so he often has to stay home in the "safe room" of his house. If Parker gets even a little bit sick he usually ends up in the hospital. Of course, all these hospital stays and medical supplies he needs cost a lot of money, especially in the U.S. I don't normally post requests for money - just a general policy I keep - but in this case, I think I can make an exception. Melody from Slurping Life has decided to run a little contest to help out with some of Parker's medical expenses. Everyone who donates $2 or more to Parker's fund through Melody's site will be entered into the contest to win some great prizes! Some of the prizes are a digital camera and camera case, an HP compact printer with carrying case, and there will be even more prizes too!

So if you would like to help out our friend Parker and his family, the time to do it is from July 23-27. I know Parker's mom,Tammy, from one of my on-line Down syndrome sites. She is a dedicted, amazing mother - not only to Parker, but to her other children as well. So pop on by to get to know sweet Parker a little better and then visit Melody's site: from July 23-27 to read more information about the contest.
P.S. Here is the latest update on Parker:

Friday, July 20, 2007

Life goes on

It's been an odd week. It's really amazing how much life just goes on - especially with two small children to take care of and to be strong for. I'm trying not to think too much about what's going on - and succeeding to a fairly good extent. Perhaps it's a form of self preservation - my brain giving me the time to process this at my speed (i.e. slowly). Perhaps it's also because we've been busy... or perhaps I've been keeping myself busy so I DON'T have to think about it. In any event, it's amazing how life has been going on fairly normally. We visited friends in Indiana on the weekend...went to African Lion Safari on Tuesday....visited with my sister, her children and my Dad on Wednesday....ran errands on Thursday and went to celebrate my niece's birthday today....

I am also starting too look at the many alternatives available to me.... and there are many. It's a bit overwhelming as there really are a ton of choices! I have received many, many suggestions over the past year and I am thankful to all the people who provided me with that information. My analytical and organizational brain is going to make a list of all my options - together with pros and cons - so I can see it all in one place. Please pray that God will lead me to the right choices.

And I do have my moments, don't get me wrong. I am human, after all. My faith is taking a bit of a beating - it isn't always strong. I feel like I'm taking a bit of beating too. Sometimes it feels like God isn't there or isn't listening. I do remind myself that God is holding me close, even though sometimes I don't feel it - and lately I don't always feel that God is listening. I'm reminded of that poem, "Footprints" in which the poet, throughout his life saw two sets of footprints walking on the sand. At the end of his life, he could see that there were times where there was only one set of footprints - and this was at the lowest times in his life. When he asked God why that was, God replied that those times where when God carried him. So I remind myself that right now, there is only one set of footprints as I'm truly unable to walk by myself. I was also comforted this week by a vist from my pastor. It was wonderful to talk to him about what we're going through, my faith and God's place in this situation.

I'm rambling a bit again as my thoughts are all over the place. Please keep me and my family in your prayers. Pray for wisdom as we work through the various options available to us; pray for comfort and for God's presence; and pray for strength to go about our day-to-day activities.

Wednesday, July 11, 2007

Dear Lord,,,

Tom and I met with my doctor yesterday to get results of the latest CT scan.

The results were not good. Not good at all. The scan showed growth that obviously just occurred over the past couple of months so it is painfully apparent that the chemotherapy has stopped working. I've had 9 months of stability and hope - and for that I'm thankful. But I'm devastated that it's ended. Devastated really isn't a strong enough word, but I don't know anything that can really express the despair that went through me.

Thankfully we do have some hope. There is another clinical trial that my doctor wants to try. It should be available in September. In the meantime, we'll continue investigating other options across Canada and the U.S. I'll also be starting the i.v. vitamin C which I wasn't able to do since I was on the clinical trial. I'll be trying anything I can that will help build my immune system - and I'll probably become one of those people who'll try anything if they say it'll help!

And, in a weird way, I'm looking forward to being off chemo for a while. I've been doing chemotherapy for 15 months now with only a few small breaks. So, I'm looking forward to gaining some strength back and to gaining some weight back.

So all I can do now is pray and ask for your prayers. I have been crying a lot, but mostly, right now, I think I'm in denial and in some depression. I am also really unable to talk about it right now and perhaps just need a few days to deal with it.

I was just re-reading the post I wrote the last time we got bad news and the Bible verse I wrote down back then was from Psalm 23: "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me." Then, on Monday night, Kurtis and I were reading from a devotional book that he has - it's geared for boys age 6-9. We're not overly diligent about doing it, but that night we read about "God's Awesome Care". The verse was "The Lord is my shepherd, I shall not be in want" (Psalm 23:1) with the comment, "I am one of God's sheep". The reading discussed a boy who was worried about his track meet the next day with the Mother replying that God is like a shepherd to us and wants to help us in all we do. The discussion then talked about what worries have and how we can allow God to be our shepherd and how we can allow God to help us when we are afraid or nervous. It's amazing how God speaks to us and gives us what we need, even when we don't overtly ask for it. This verse and this devotional was exactly what I needed to hear to remind me that God is ALWAYS nearby and is taking care of us. And right now, I am going to work on letting God lead me like a sheep who doesn't know where to go.

Dear Lord,
Only You know how terrified we are right now. The future is so scary. I know that, if worst comes to worst, I will be healed in heaven and I will see You face-to-face in your glory...but Lord, I need to be healed here on earth. Lord, you know how often I, along with many others, have prayed for complete physical healing. I pray for that again. God, I ask that you heal me physically, fully and completely. I also ask for peace for me, Tom, my Dad, my sister and my dear friends and family. Help us to trust you wherever you may lead us. I know that, whatever happens, you are using my life to your glory.

P.S. I also ask that you keep Marissa in your prayers. She is also facing some uncertainty with respect to test results.

Monday, July 09, 2007

"Chewing the Fat"

"Chewing the Fat" is a blog by David Hingsburger. I heard Dave speak at the first Down syndrome conference I attended - way back in May 2002. What he spoke about was hard to hear - painful even - but it was the truth and he opened up my eyes. He also taught me a great deal in that one hour session.

Dave's blog is amazing. He sees incredible things in the ordinary. He opens my eyes and makes me think. He makes me laugh. I haven't been keeping up to date on my blog reading and missed this entry from July 1. But, I think it's a great piece and so I wanted to share it with you. Read it. And while you're there, take a whirl through his blog and enjoy the read!

I have had many thoughts about what Ryan will or will not do in the future. Most of those thoughts occured shortly after he was born and in the first year of his life. It's funny... but as time goes on, I think less and less about what he will or will not be able to do (although I will never stop teaching him so that he will be ABLE to do what HE wants to do). I have thought about Ryan driving a car but honestly, when I did think about it, it fell into the category of "probably not". Shame on me. Thanks, David, for once again opening my eyes!

Thursday, July 05, 2007

What's that saying about time flying??

something about having fun I think....

I can't believe my last post was June 19 - over 2 weeks ago! And yes, we have been having fun (other than the 1 week of chemo, but we won't mention that).

The end of the school year always brings its own particular busy-ness.
- There was a talent show to attend. Kurtis, along with 9 other of his classmates, performed The Macarena - finished off with a flourish by a human pyramid. It was so cute to see, and they did a great job, in spite of the music mix-up at the beginning (I'd love to post the video, but I don't think it would be fair to post without asking all the parents' permission). Honestly, though, I was just so proud of Kurtis that he actually DID something. I don't think I would have had the guts to go in front of that many people when I was in grade 2... in fact, I know I wouldn't have!
- We went to a end of year senior kindergarten party hosted by a family of Ryan's classmate (this is not to be confused with the SK graduation ceremony and party that was held the next week).
- Finally, we (as in Tom and I) were invited by Kurtis's teacher to attend the end-of-year assembly. I wasn't sure why, but I had a feeling it was to see Kurtis receive an award. And I was right! We are so proud of Kurtis as he received the 2006-2007 Christian Leadership award for his class. Kurtis got a bit tired of me telling him how proud I was of him.. "enough Mom!!"

And we have been busy enjoying the beautiful weather. Tom hadn't been feeling good for a while, so now that he is feeling better, the boys have been able to go out cycling again. On Monday (Canada Day holiday), we along with my Dad, my sister and her family were able to go out and enjoy our "new to the whole family" boat that my Dad bought for us. Although this boat needs a bit of loving care, it will allow us to do some skiing and tubing (thanks Dad!!). Having grown up at a young age with a boat, I have such great memories of learning to ski, skiing with my friend behind the boat, having fun going on a tube behind the boat, and watching my Dad and his friends slalom ski and do other hot-dog tricks. I really wanted to be able to recreate those memories for my children (and my sister's children). We weren't able to try skiing on Monday, but we were able to put the towable behind the boat and watch the laughter on our kids' faces. We purchased a towable that has seats IN it so the kids are quite safe....not as much fun for the adults, but lots of fun for the kids. We adults will get our fun skiing.

Finally, I'm thrilled to say that Kathy has returned to watch the kids for the summer. Remember Kathy from last year and how happy we were with her and the care she provided for Kurtis and Ryan? Well, she's back for another summer and the kids and I couldn't be happier. She started work late last week and she's already keeping the kids busy - two trips to the library, one trip to the grocery store for cookie ingredients, baking said cookies, many card and board games. Tomorrow is another trip to the library to see a magician's show (they have wonderful summertime activities planned) and then to the splashpad. Tomorrow night is Italian Festival.... another yearly tradition for our family that the kids look forward to excitedly. They love to ride the carnival rides, eat the wonderful pasta and other Italian dishes and enjoy a spaghetti or cannoli eating contest. FUN FUN FUN