31 for 21 -Last Day: Aidan's Halloween Rhymes

This little video of Aidan doing a couple of Halloween rhymes was done with my webcam. So, the quality isn't great - but I still wanted to share it. The funny thing is that he loves to watch these little videos and participates way more...so, I will have to videotape him watching himself on video to get an even more animated Aidan.

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31 for 21 - Day 29: Happy Post....

The boys are looking forward to Halloween with great excitement. We had fun picking out pumpkins, scraping out pumpkins and carving pumpkins. We love Halloween, and I feel a little sad that the schools here can't/don't celebrate. They had a wear orange and black day, but it just doesn't seem the same. I know that it's important to be respectful of other cultures in our public schools, but at the same time, I miss the way we used to go all out when we were kids.

Charlie is a great, patient dog with Aidan, and I'm so glad. Now, I wish I could socialize Charlie with other dogs. That part of adopting an older dog is a little frustrating as we don't think he was socialized with other dogs at all.

Though Aidan finds it all very humorous.

On a different note, we are having a group of preschoolers/toddlers over to the house tomorrow for a Halloween storytime. I made haunted houses with a scroll of Halloween creatures that move through the door while we do a poem. I"m happy with how they turned out.

The poem, which Aidan LOVES goes like this:

Tip toe, tip toe, tip toe, tip toe.
Who's that knocking at my door.
Could it be a __________ (ghost, mummy, witch, monster, black cat, etc.)?
AHHHHH!
Run, run, run. Run, run, run.

I don't know the author of this little poem to give them credit. I heard it at Liam's old preschool. Ihave to catch Aidan doing this on video - his little scream is hilarious.

Take care everyone, and happy Halloween when the time comes!

31 for 21 - Skipped more - Day 25: The sadder side

I don't know, I've been trying to think up something positive to write about - but I keep thinking of a few of our sad realities. So, if you don't feel like a bit of a depressing read: Stop. Reading. Now.

Before I had Aidan, I had no idea about all of the health concerns that go along with having an extra little chromosome. I didn't know that roughly half of the babies with Down syndrome have a heart problem. I didn't know they were more susceptible to leukemia, thyroid problems, digestive problems, respiratory problems and vision and hearing issues. I wasn't in the loop. On the day he was born I was handed the book: Babies with Down syndrome: A New Parent's Guide, and read the checklist that scared the crap out of me.

Now I'm in the loop, and we have regular doctor's visits and many, many blood tests. Aidan's already been diagnosed with an underactive thyroid and takes medication to help with that. He has food sensitivity issues (milk and soy), glasses that he refuses to wear, and I've already mentioned the three holes in his heart that are now fixed (thank God for that).

What I just learned, from James last night, is that Aidan's life expectancy is currently at about 55 years. My heart sank. How can this be? James said, "but that's better than just 10 years ago, so we've got that to be thankful about."

Still, it felt like I was kicked in the stomach. I had pictured Aidan becoming a sweet old man.

Re: Happy Halloween!

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31 for 21 - Skipped a few - Day 23: Aidan Antics

Don't let this peaceful photo of a sleeping Aidan fool you, the times are getting busy with the littlest billy goat.

Two days ago, he was watching Elmo, so I was in the next room getting his lunch ready. I could hear him laughing, so I assumed he was enjoying the show. Unfortunately when I peaked around the corner it was to see that he'd discovered the fun in his diaper and had been doing his equivalent of body painting. "Straight into the bath with you little boy." My fault, totally my fault.

Yesterday we were expecting company for supper. Aidan was on the potty and I ran down to open the door, then said, "Aidan's on his own I have to get up there." When I got back to him, he was one very happy little boy, sitting on the bathroom floor surrounded by a whole roll of unrolled toilet paper. Shredding it and throwing it into the air like pieces of confetti. "Hooray!"

Alas, these are two of our anecdotes about Aidan's antics. Alliteration always awesome.

31 for 21 - Day 17: When Aidan's happy, he's really really happy

Aidan isn't always a happy little camper. He has his moments of terrible threeness just like the big boys did. For instance, he doesn't like to go back in his stroller once he's out. He fights, does backward bends, goes limp and boneless, and pushes off against my neck like he's about to embark in a swan dive. These moments are physically tough. My shoulder hasn't stopped hurting in months.

But thankfully, these tough moments are interspersed with moments of great joy. When Aidan's happy - he lights up a room. His giggle is infectious, and can make even a tough guy smile.

My favourite moment today was during Aidan's bath. He was so happy. We were singing, and I was pretending I was a snappy (and snazzy) crocodile. He couldn't stop giggling....I wanted to bottle up that gorgeous sound and save it for a rainy day.

31 for 21 - Day 15 3/4: Down syndrome NOT a punishment, not at all!

I just stopped by one of my favourite blogs - Big Blueberry Eyes. I'm sure you've heard of it if you're in the Down syndrome community. Michelle's is one of the very first blogs about having a child with Down syndrome that I came across three years ago. Her beautiful presentation of Kayla and her family made me certain that Aidan is going to have a good life. And that we are going to have a great life right alongside him.

Today Michelle wrote about someone's comments that are out there haunting the blogosphere. I've copied a portion of Michelle's post so you can get some of the context of my frame of mind this morning:

You'd think after 6 years I'd learn to grow some thick skin and not let things like what was said bother me, but this one just cut me to the core.

I've heard "suffers from Down syndrome" enough to become mostly immune to that ... although it does still irk me because Kayla is not 'suffering.'

But this one was something else, the commenter said: "...my belief that Down's is a cruel and unusual sentence to visit on a child."

Whoa!

Did I really just read that? Cruel and unusual?

Then there was this: "Far more Down's children live miserable, suffering lives than these individuals want you to believe. Viewing the lives of affected children, and simple education tells me that I could never force a child to endure what they would should they be born with Down's."http://mdbeau.blogspot.com/2009/10/cruel-and-unusual.html

After reading this, I have a very heavy heart. I know that it is just one voice in the conversation about Down syndrome...but I worry about who that voice belongs to. How much influence does that one voice have? What if a pregnant woman has been presented with a diagnosis that her unborn child will have Down syndrome? What if that pregnant woman does a little on-line research to learn more about having a child with Down syndrome? What if that opinion is the only one she reads before making a decision about her unborn child?

I'd like to end this post with a comment left by a former colleague of mine on a post I made a little while back. I worked mornings at a K-9 school with "Fergie," and I often took Aidan in for visits with the children and spoke openly about Down syndrome with them. This is the second year I've been away from that school (and that Province), but I'm glad to say the students have not forgotten Aidan. Here's Fergie's comment:

Hey Carol, this post struck a chord with me. I read The Memory Keeper's
Daughter this summer (on your recommendation) and then the other day in science class my kids and I were talking about genes and from there we started talking about different genetic disorders, down syndrome, you and your family and how people used to put people with down syndrome into homes. My kids were quite horrified with that idea. They all remembered Aidan and couldn't believe that
anyone would have ever done that. Hope your Thanksgiving is going well!

Okay, now my heart isn't quite that heavy. There's a whole classroom of middle school kids who are a little wiser for having met Aidan. Thank God for that.