Saturday, October 31, 2009

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, I will have to videotape him watching himself on video to get an even more animated Aidan.

Thursday, October 29, 2009

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.)?
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!

Sunday, October 25, 2009

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.

Friday, October 23, 2009

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.

Saturday, October 17, 2009

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.

Friday, October 16, 2009

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: " belief that Down's is a cruel and unusual sentence to visit on a child."


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."

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.

Thursday, October 15, 2009

31 for 21 - Day 14: Aidan is...paraphrasing what others have said

Aidan is light. There's a brightness around him - we're all drawn to him. (our family friend).

He's so cute, I just want to hug him up. (stranger in the grocery store)

Aidan is a chick magnet. A ladies man. (our family friend)

He's the best little brother in the whole universe. (his brothers)

Aidan brings the best out in people. (me)

Wednesday, October 14, 2009

31 for 21 - Day 13: Aidan Retro

They ought not to put a post-partumly depressed mother and her sick infant in a hospital room that overlooks the crematorium.

Those were dark days. The first month of Aidan's life we thought he was dying twice. In part because the doctors lead us to believe in the horrible possibility of his death. Over and above the three holes in Aidan's heart, we were told that he had possible liver failure (he had jaundice). Another time he had blood in his stool and they felt it must be necrotizing entero colitis (sp?) (he had a dairy sensitivity).

We didn't know that our doctors were thinking worst-case scenario and working backwards from there. James and I were frightened, felt helpless, defeated, and walked a fine line of mourning. It was hell. I've never felt more vulnerable.

The crematorium really was there below our hospital room window. And at night hookers and homeless people would walk by slowly. I had to think what I would do if Aidan died. How I would tell Kieran and Liam. How we would live afterwards. It was an incredibly sad time, and it took me months to recover.

There was one thing that helped me: after being in the emergency room for 5 hours, and realizing that they were waiting for a room for us, I closed my eyes and imagined my grandmothers and my dad standing behind me. Placing their hands on my shoulders. I should mention, that at this point in time my grandmothers and dad had passed on, and so it was quite a ghostly feeling, but warm too. It gave me the strength I needed to keep going.

How selfish of me. Here I am talking all about how I felt, when it was Aidan on the front line. He did very well considering how many blood tests he had and Intravenous pokes and x-rays. He was a trooper and came through everything with a determination that astounded all of us. Thank God for that.

Monday, October 12, 2009

31 for 21 - Day 12: The Aidanator

For some time now, I've called Aidan, "the Aidanator" - or at least I've done so in my head. He barges into life with confidence and steadfast optimism....sometimes I wish I had some of his determination. Here he is balancing on washed-up logs at the beach:
If he wasn't doing this, he was trying to dive into the frigid water. He keeps us on our toes.

I threw this photo in because I thought he looked heroic...I just wish Charlie wasn't licking his own nose:

Sunday, October 11, 2009

31 for 21 - Day 11: Yay, he did it again...

Yes, another potty post. Sorry (well, not really - I am so proud).

Today Aidan sat on the potty and pooped. He seems to quite like the potty. We put a sticker on last time which was a Bob the Builder dump truck (no pun intended :o)
Today, when I took the stickers out, he knew what to do, and helped to put the cement mixer on. Aidan clapped wildly for himself - and was fascinated as we flushed it all away.

I hope I can keep up with the routine of taking him...I really feel pressure now (for myself, not him) to keep things as positive as possible with the potty.

Saturday, October 10, 2009

31 for 21- Day 10: Walking around the lake

We went for a walk in the woods today. Around a lake and back again. Happy to spend Thanksgiving in the crisp Fall air. Life is good.

If only we got our middlest billy goat to come with us - but he wanted to stay home close to the turkey. My oldest billy goat did a great job of keeping up with us, and seemed to really enjoy being out with us without having to compete with Liam for attention. It's at moments like this that I realize how important one-on-one time is for our kids.

This was Aidan at the half-way point. So peaceful. I'm not sure if you can see in this picture, but he sleeps with his eyes open a little bit.

This was one of those days when I didn't really think about Down syndrome. It wasn't an issue. All the family that came for supper know Aidan. And love Aidan. We've had conversations about Down syndrome, but I think we've moved past a need to talk about it. Everybody notices how he's developing, but there's no pressure. Aidan is developing at his own pace, we're here to help him develop in the best way possible. So, today wasn't about Down syndroem, (though you might argue that I'm talking about it now), it was about being together as a family and being grateful.

Some days are like that.

Friday, October 9, 2009

31 for 21 - Day 9: Other way around

When Aidan first came into our lives, a few people said, "God gives these kids to special families." I didn't contradict them, but I think they had it backwards - and I know I've said it before: we're the lucky ones. We benefit every day from having Aidan in our family. I would not give him up. Ever. Thankfully we live in an era where keeping our child seems to be the norm.

Aidan after surgery
Aidan after his heart was fixed.

But norms change. And I really fear that mothers are persuaded a little too much to have testing done, and are encouraged a little too often to think that there is something wrong with their child...before they're even born. Sometimes they're persuaded to terminate the pregnancy in the early stages - and I feel so sad for the doctors who think this is best. They obviously don't know anyone with Down syndrome. They haven't had that bond...yet.

Thursday, October 8, 2009

31 for 21- Day 8: potty

Today Aidan went on the potty - 2 pees and 1 poo. Isn't that extraordinary? He was so proud - he laughed himself silly!

31 for 21 - Day 7:

Aidan has not been feeling well for two weeks now - he's dripping from the nose, he's coughing a bad-sounding cough, and he's chewing on his sleeves.

When he gets a cold I worry. We've been to emergency a few too many times with croup, and something inside of me tightens whenever his cough worsens. His passageways are smaller since he has Down syndrome, and croup just seems to love him.

So far we've stayed out of emergency. Today he was a little happier, so I'm hopeful that he's on the mend.

Wednesday, October 7, 2009

31 for 21 - Day 6: Company

Today my in-laws arrived. Aidan was so thrilled to have his Dido back, he pushed me away when I tried to take him upstairs for a nap...but, he let Dido take him. Stinker.

Monday, October 5, 2009

31 for 21 - Day 5: kindness of others

When Aidan was born, we lived in Winnipeg with no family close by. Our neighbours were great and automatically stepped up with offers to help.

One neighbour in particular holds a special place in all of our hearts. Her name is Sandra, and she was beyond amazing and wonderful to Aidan. When Sandra heard of Aidan's heart condition she offered to come and sit with him while I walked the boys to and from school. Kieran was in morning kindergarten, and Liam was in afternoon nursery school. In the dead of winter, Sandra would bundle up and come over so that I wouldn't have to take Aidan out in the cold. She always smiled. She would call out, "where's my little boyfriend?" She delighted in holding him in the rocking chair. She did this four times a day whenever she could. When Sandra would have to be away for work, she always gave me advance notice. On those days, Aidan would be under my jacket in a snuggly. He was so tiny!

My favourite memory was when Liam showed up with just a Darth Vader mask on, and nothing else. He stood there starkers and she just laughed.

Sandra was magnificent to us - a truly good and genuine person with a great passion for life.

While we have awesome neighbours in our new Province, we dearly miss Sandra and her wonderful laugh. Everyone should experience a neighbour like Sandra - at least once in a lifetime!

Sunday, October 4, 2009

31 for 21 - Day 4: Blue pajamas

Get It Down; 31 for 21


This morning Aidan is wearing his fuzzy blue pajamas.
My heart melts.
Love spills into the room all around me.

love in blue pajamas

Saturday, October 3, 2009

31 for 21 - Day 3: Advocate This...

Get It Down; 31 for 21

In my humble opinion the best advocacy I can do for my son and people with Down syndrome is take Aidan out in the community with me. Little old ladies stop to chat with us in the grocery store. We meet other families who have children with Down syndrome in parking lots and we exchange quick nuggets of information. We play with other children at the playground. We volunteer in the school so that the teachers, students and support staff, parents all get to know Aidan.

He's a magnet. Other people, young and old seem to be drawn to him. I have never experienced a negative moment when we're out and about.

Aidan waves to people. Laughs. High fives. Claps. Talks on his hand phone. Plays ring-around-the-rosie. And basically charms everyone he meets.

I don't have to stand behind a podium to advocate for Aidan, though the day may come when I'll want to. For now, the best thing we can do is be out there for the simple joy of it.

Friday, October 2, 2009

31 for 21 - day 2: Life is full

Get It Down; 31 for 21

Life with Aidan is full. Full of joy, full of appointments, full of explanations, full of love, full of chromosomes (well, just one extra one really).
Aidan, Aidan, What do YOU See?

Today we took him to the walk-in clinic to have his chest listened to. When he gets a cold, it goes straight to his chest, and he barks. He's been to emergency on a number of occasions for croup and x-rays - though it's never developed into pneumonia (thank goodness).

The good news is, Aidan has a virus - his ears are good, throat's good, chest sounds okay. We have to be on the watch of course in case it develops into something worse - but for the time being we just have to give him a little extra TLC.

Still, his cough sounds horrendous. Wish him luck for a speedy recovery!

Thursday, October 1, 2009

I'm doing the 31 for 21 Challenge!

Get It Down; 31 for 21
I've just learned about this 31 for 21 challenge to write daily for the month of October to raise awareness about Down syndrome. Why this month? Why now? Because, this is Down syndrome Awareness Month - so why not? I think it's a sign that I've actually come across this blogging event today on the first day - so I'm jumping in and rising to the challenge.
Now about our littlest billy goat. Aidan was born three years ago, and the fact that he has Down syndrome came as a complete surprise to us. Well, we were surprised, but we weren't. It's very hard to explain. James and I were aware that there was a higher chance of having a child with Down syndrome because of my age, so I think we both mentally prepared for it. Also, we chose not to have any testing done while I was pregnant other than the ultrasound. At that point we had a rather "whatever will be will be" outlook.
I have no regrets. None at all. I had a very good pregnancy. We all anticipated his arrival with great joy. We actually knew he was a boy from the ultrasound, and were calling him Aidan long before he joined us out of belly.
What I wasn't prepared for was his heart condition. I was not aware that there are so many other health complications, and I was quite floored by the news that he would need heart surgery. I cried my eyes out in the bathroom next to the Variety Heart Centre. I sat in the waiting room like a zombie. I felt like I was repeatedly kicked in the stomach. It was very, very hard.
Is Aidan blowing raspberries again?
This photo was taken when Aidan was almost a year old.
What helped? My big boys. They didn't see all of the complications when they saw Aidan. They saw their baby brother. They loved him up right from the beginning and it did my heart good.
What else helped? I went on-line. I searched for images of children with Down syndrome and came across a few group sites on Flickr. Going through images of children and their families made me have hope. Gradually I made connections and saw that other kids made it through with flying colours. Families survived the stress involved in watching their babies go into heart failure, and come out of the hospital pink and all fixed up.
What else helped? My family and friends. They were so amazing. They loved me even when I was strung out with anxiety.
What else helped? Respite services. I remember walking around the mall near our house...I was completely in my own head, but I needed that escape (even though I felt guilty at first). It was healthy to get away and come back happy to see my little guys.
This has been a rather long post - I'm excited about the 31 for 21 Challenge - but expect some brief entries to come.

Canadian Thanksgiving Coming soon!