The Joy of Boys

Do girls do this?? My boys have so much fun wrestling.... it's a regular activity around our house. They were wrestling before I started to video but Ryan stopped when he saw the camera out so I just had to encourage him a bit. And I think I may have to be a spendy girl soon and get a REAL digital video camera instead of just using my regular camera for videos... it would be much better, don't you think?


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Ryan's christmas concert and Kurtis on piano

Here are two videos of my sweetie at his Christmas concert yesterday. I was so impressed with the last song - they signed "we wish you a merry christmas"!



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Have I mentioned how much I love Ryan's teacher? And boy, are we going to miss her as this is her last week. Mrs. W is covering a maternity leave and Ryan's regular teacher is coming back in January. Mrs. W taught me a valuable lesson in pre-judging. I heard we were getting a substitute teacher for 4 months who was coming out of retirement to do this. I immediately thought that she'd be a teacher with old outdated stereotypes, one who would limit Ryan and not include him. I was so worried at the beginning of the year.... and boy, was I wrong. Mrs. W is amazing! She was eager to meet with me and discuss goals for Ryan (outside of his official "individual education plan") and discuss how best to teach him. She fully included Ryan in the class - calling on him when he raised his hands even though most of the time he didn't know the answer (but many times he did!). She taught the class sign language and Ryan "led" the class during those sessions. She held him to a high standard of behaviour - unfortunately, for Ryan, this means a fair number of time-outs - but Tom and I fully expect Ryan to be held to the same standard of behaviour as other children. She encouraged independence but also realized that modifications could be made if the task was too challenging. At first Ryan really missed his junior kindergarten teacher and wasn't thrilled with Mrs. W, but as you can see in the picture, he really really likes Mrs. W now! We really are going to miss her.

Here's a short video of Kurtis doing his piano concert. He did have a school Christmas concert but I didn't get a good video of it.

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Prayer

Prayer has been elusive lately. I feel like I've been praying the same prayer for 10 months and right now the the connection just isn't as "strong". I'm not too worried - I've gone through lulls in my spiritual life before. I don't know if this is normal... or if I'm just not as dedicated a Christian as others, but in any event, it's me and my life. I find at times like this that I resort to "impromptu" prayers - not formal prayers. I say a quick thanks for the beautiful birds outside my window, a quick prayer for strength when I'm feeling particularly weak. It does bother me a bit that I can't seem to pray right now as I have so much to pray for. But I feel like I'm asking of God all the time.... for health, for strength, for my Dad and my sister and me as we grieve Mom's death....ask ask ask. I've been feeling this way for a while but it hasn't yet resolved. So my prayers continue to be minimal.

Then, a few days ago, I received an email from a woman ("H") I met on-line who has the same cancer as me. She wrote: I don't know about you but lately I've just been putting my hands up to Jesus and groaning. Nothing more to say. Just help us Lord.

That night, I opened a devotional I hadn't read for a while. For some reason, I decided to read the devotional for the day my Mom died (October 31). The verse is from Romans 6:26-27: "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will".

Wow - talk about an answer to a non-prayer! The devotion continues: "So we can simply pour from the fullness of our heart the burden of our spirit and the sorrow that seems to crush us. We can know that He hears, loves, understands, receives and separates from our prayer everything that is in error, imperfect, or wrong...... It is not necessary to be continually speaking to God, or always hearing from God, in order to have communion or fellowship with Him, for there is an unspeakable fellowship that is sweeter than words. A little child can sit all day long beside his mother, totally engrossed in his playing, while his mother is consumed by her work, and although both are busy and few words are spoken by either, they are in perfect fellowship.....Then when troubled with burdens and difficulties too complicated to put into words and too puzzling to express or fully understand, how sweet it is to fall into the embrace of His blessed arms and to simply sob out the sorrow that we cannot speak".
- from Streams in the Desert, L.B. Cowman

H, I hold up my hands as well and say "help us Lord". God hears us even though we don't know what to say. He hears the inmost desires of our heart and listens. May we both feel God's presence, love and peace. I keep thinking of this verse and it helps to feel "connected" even when I don't feel overly connected via prayer.

...too soon.

I spoke too soon, that is. How I wish I could figure this chemo out - it's been extremely frustrating, to say the least. Last time I posted, I was feeling OK. But the days since have been up and down... I don't know why the nausea is lingering so long. I wonder if it's something I'm eating or perhaps something (some nutrient, vitamin or mineral) that I'm missing? Or is it just that the chemo is lingering longer in my body? I had a substitute doctor last visit and he wasn't any help when I mentioned that I felt sick for so long. Thank goodness I get an extra week off during the Christmas holidays so I can regain my strength!

Anyways,,, enough about that. I want to share about my on-line friend, Nicole. I have mentioned her before. She has a daughter with T21 - which is how I met her. She is also blessed with 3 other daughters and a wonderful husband. Very recently, a family in her area had a baby girl born with Down syndrome. This family feels unable to care for this little girl and will be giving her up for adoption. After a lot of prayer and deep consideration, it appears Nicole and her husband will be adopting this little one. I am so so happy for them. Since I have known Nicole (5.5 years ago!), she has talked about perhaps adopting another child with T21 "someday". Well, it appears that someday is here. You can read more about it on Nicole's blog: http://all4gals.blogspot.com/.

Feeling better

This round of chemo has been much easier than last round. My sister asked me what I did differently.... how I wish I knew! Then I could duplicate it!

I'm still quite fatigued - getting the kids ready this morning really wiped me out. And I'm still dealing with some nausea. It seems to hit in late afternoon. Again I wish I knew why that was, but for now, I lay down and take my gravol.

I've been able to eat since Thursday, which is fantastic. I've been living on a fairly limited diet of water, watered down Gatorade, premium plus crackers, cereal with milk (crispix and cheerios) and small portions of Ben & Jerry's chocolate ice cream (that was new today). But at least it is eating! Hopefully in the next few days other food will become a bit more appealing and more able to "stay down".

How far we have come! ... or have we?

Mike Shaw is the Chair of the Canadian Down Syndrome Society Board of Directors. I had the pleasure of meeting Mike when I was co-chair of the 2005 CDSS Conference. He is funny and very sociable. He is also VERY passionate about people with DS. One of the things I am liking is the direction CDSS is taking with regards to advocacy. Their stated vision is: "a proud Canada where ALL are welcome, we embrace diversity and we value everyone's genes equally". They have taken out ads in major newspapers and put ads on roadside billboards. I am hopeful that CDSS will become more and more vocal in the future.

Here is an article published in the Fall 2006 CDSS Newsletter by Mike. It is an excerpt from his opening speech given at the World Down Syndrome Congress in August 2006. Reprinted by permission of the author. I'll write my thoughts on this tomorrow.

Just over a year ago, the Board of Directors developed a new vision and mission for the Canadian Down Syndrome Society. We did not, however, do this unaided. We were guided by the wisdom of the Voices at the Table Committee. (Annette's note: Voices is comprised of adults with DS). This talented group of self-advocates wisely instructed us and made it clear: "Nothing about us, without us". We listened. And we believe our mission and vision reflects their goals.

We are determined to see a Canada where all are welcome. Two generations ago, when parents received the news that their new baby had Down syndrome, a recommendation to institutionalize that baby generally followed closely behind receiving the news. A generation ago, the determination of Down syndrome was still a sombre announcement - albeit one that came with the recommendation to raise the child at home.

Today we look around us and many of the adults in our midst were those babies one and two generations ago. They are here as self-advocates, as Ambassadors, and they are here celebrating their unique genes - celebrating the fact that they have Down syndrome.

How far we have come! Or have we?? Today, news of an impending birth where the child has Down syndrome is still met with the same negative attitudes as generations past. The difference today is that there will never be an opportunity to celebrate many - no, most - of these individuals with Down syndrome because so often the pregnancies are terminated.

Really, what has changed in these past generations? The general public attitude towards people with Down syndrome? Clearly not. The only thing that has changed is society's means of isolating itself from an entire segment of the population. We have moved from the isolation of institutions to the whole scale removal, in many cases with government funding, of fetuses with Down syndrome through more "efficient" screening technologies.

Nelson Mandela once said, "our struggle has reached a decisive moment". This is true for each and every one of us in attendance here this weekend. We are engaged in a battle for nothing short of a future that includes individuals with Down syndrome. And that battle has to happen now.

The message is clear. Individuals with Down syndrome are part of the mosaic that is Canada. They are as much a part of this land as any other individual. Celebrate their talents, victories, friendships.

Canadians need to hear and heed this message. We know we have a long way to go. A recent article in the Globe and Mail told of one woman's decision to terminate her pregnancy following a determination of Triple X in her unborn child. The article also elaborated on her pre-conception decision to abort the fetus if a test for Down syndrome were to be positive. While this woman may have been unique in publishing her story, she was not unique in her decision. But as loudly as that woman chose to tell her story, it will never be as loud as our self-advocates speaking out for themselves. Recently the Toronto Sun profiled Andreas Prinz, a member of our VATTA committee. All over the country stories are popping up in newspapers and on television that celebrate the joy of being or knowing an individual with Down syndrome.

Robert Kenney described it this way: "every time you stand up for an ideal, you send forth a tiny ripple of hope." If everyone stands up for an ideal - stands up for what we believe in - and celebrates Down syndrome, just think how large that ripple of hope could be. It won't be a ripple - it will be a wave - a new wave of beliefs throughout this country and indeed, throughout the world.

Going under

I'm heading in for another chemo treatment today so I won't be posting for a while. I'm praying hard that this one isn't as difficult as the previous ones. I'm really dreading this to tell the truth... but you gotta do what you gotta do.

Dancing Boy

Ryan is having a lot of fun with some Halloween costumes. I picked up a SpongeBob costume for $5 and a Cat in the Hat costume for $7.... AND.. I just figured out how to get the videos right on my blog, so I had to share these videos of dancing Ryan.



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The start of a new tradition?

Kurtis has been soooo excited about Christmas already. He's been begging me to get the house decorated, but my rule is that I do the decorating on December 1 (or the weekend that follows) and not before. So he's been begging to bring the boxes up from the basement,,,, to put up the wreath - ANYTHING that I'd let him do. So, officially, on December 1, I allowed some decorations to be put up but on Saturday we did the tree.

Ever since Tom and I have been married, we've had an artificial tree. And growing up, we've had an artificial tree for most of my life (I do remember a live one when I was very little, but that was a loooong time ago!). Two years ago, we got a real tree after me begging for one. This year Tom thought it would be fun for us to go to a tree farm, pick out our tree and cut it down ourselves. So we headed out. They take you out on a hay ride to the trees and then you start walking and inspecting each tree in order to find "the perfect one". I was very impressed with the tree Kurtis picked, and I do think we got the perfect one! Both Kurtis and Ryan were eager to help with the saw and to drag the tree back to the tractor.


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