Why that name

Just a quick note - I chose this title for my blog because if any of you have tried to actually go up the down escalator it is a lot of work. When my son Simon was born, I was figuratively transported to the basement. I was struggling to find out what this meant for our family, and our future. I began a journey on that day, to go up the down escalator. I know it will always be a lot of work to keep going up, but that is what I have to do now to stay out of the basement. Simon has Down Syndrome, but I am choosing every day to make life normal for him and to help us get back to the ground floor. Anytime I forget the joy and stop moving forward, I find myself rapidly descending into the basement again. Thankfully I also have an emergency stop button. He is my Creator and my Father. The One who brings the despair to a standstill when I call on Him. He is my Rock and Refuge. The One I can run to when no one else understands. It may sound cliche, but it's true, I couldn't do any of this without God. He is the reason that some days I can still smile when things are ridiculous inside. That is why the name.

Thursday, July 28, 2011


I am slowly losing track of where I am in the timeline.  I realized that I forgot to mention the advantages of having a child with a disability.  Oh, there are some perks.  I won't mention all of them, because then you might stop paying your taxes :)  But.... part of living in Winnipeg in June is the Red River Ex.  Because we lived so close to it, we could hear the concerts, and watch the fireworks from our bedroom window.  I had only been there twice, once before we had Simon, and once when I was pregnant with Elizabeth.  I can't remember now who put this event on, (Society for Manitobans with Disabilities?) but it is a wonderful idea.  We heard about it through our case coordinator.  They have a special day at the Ex. for kids with disabilities.  There is no music on the rides, and they have the petting zoo set up, and free admission, free hot dog lunch, mini donuts, cotton candy, and a stuffed animal.  But.....  I had a problem.  Since it was on a weekday, Andrew was unavailable to come with us, so I was outnumbered by my offspring.  I looked around and found someone who looked trustworthy and paired up with her.  She had her mother along so she did have help, but she knew from other years that it works better to have two people along.  Elizabeth and I went on some rides and had some fun.  Simon came on the carousel with us, but otherwise he just kind of hung out.

I even managed to get a bit of a grin out of him!

In July we moved out here to Winnipegosis and Andrew started a new job as the pastor here at the Mennonite church.  It was a bit of an adjustment, but I think we all handled it well.  I don't have much else to say about it right now, other than I am very impressed with how quickly Andrew adapted to small town living.  Going mudding with the guys, going for coffee at the hardware store, and so on.

In September Simon started to gain some mobility.  He was pivoting on his tummy for something that he wanted.  Up until this point he would roll to where he wanted to go.  It is so strange sometimes to look back at where we have come and think about how hard Simon had to work to get where he is.  He was almost a year old before he would lift his head when you pulled him to a sitting position.  Most kids are almost walking by the time they are one.

I am truly blessed to have a little coach who is pretty much with me all the time.  Elizabeth is a great big sister to Simon.  She is calling him to come to her, she brings him toys that she thinks he will like, and she is always with him or after him.  Granted, she needs some time to herself, but she is usually watching out for Simon and what he is getting into.

 I am so unfocussed right now.  There is a lot going on at our house, and when I look at Simon's day planners (his version of the baby book), I am overwhelmed by the number of appointments and things of Simon that take up our lives.  I am recently starting to feel more conscious of how often I talk about Simon and not about Elizabeth.  I am starting to be aware of how Elizabeth responds when we meet someone and talk about Simon.  We have started to leave her with someone for appointments for that reason, and because we have that option.  Some of his appointments are really frustrating because she is always in there wanting to show the therapist how she can walk and do somersaults.  I try to be patient because I think I can understand how she might be feeling, but it is hard to put it into perspective for her.  She does so well with him though.  She holds his hands to help him walk.  (I have finally stopped gasping every time she does that.)

It is going to be an ongoing battle to not compare Simon and Elizabeth.  Even comparing Simon to other kids has now taken on a new facet.  Now that I know his "developmental age" I can compare him to kids his own "age".  Sometimes knowledge can be a very powerful tool.  I make exceptions for him too.  "Oh, just leave him, he doesn't understand yet."  Or does he?  The other day he got into my fondue pot and accessories.  (Not the forks, don't worry.)  He was banging two ceramic bowls together to make a wonderful noise.  I called his name and told him, "No Simon, those are Mommy's,"  to which he ignored me and kept banging.  Here is where the D.S. card comes in.  I can already see him using the "But Mommy, I've got Down Syndrome, I can't do that," line.

If you need something to pray for us for, right now it would be the understanding of his understanding. 
Parenting any child a difficult job, but with Simon there are so many variables that make it extra challenging.

I think that is all for today.  Any questions?
Talk to you later,

Tuesday, July 26, 2011

Baby Love

So I realized the other day, that in my mad dash to catch up on Simon's adventures, that I left out a very huge milestone.  Andrew and the kids and I went to the Baby Love even put on by the Down Syndrome Society.  (I can't remember if it was the Canadian or Manitoba chapter.)

What an eye opening experience.  When I got there I wasn't sure what to expect.  I had seen lots of adults with D.S. but hadn't seen many kids.  When we first walked in the door we were greeted by a young woman with D.S. who took our names and gave us name tags.  She was sitting with a "regular" young woman and they were having a great time talking and laughing.  She was talking about the courses that she was taking in College.  Wow!  College!  That blew me away.  Partly because Simon was only 5 months old, and we were (and still are ) working on getting him to eat, never mind go to college, and partly because I had so many preconceived notions of what people with D.S. could or couldn't do.  The adults that I knew went to the day program in town and didn't do much else.  No job, no spouse, just hanging out with other people like them.  Somewhat disparaging.  This young woman was an inspiration and a reminder to me, to let no limits be placed on our little man. 

The next best thing about Baby Love was finally getting to meet Trent.  What a sweet little guy.  He was 18 months old at the time, and because his parents own a boxing gym, he saw a lot of boxing.  So.... if you asked him to box, he would put both fists up in front of his face and jab with one of them.  It was so cute!  Ever since then, I have been looking at what Simon does with a little bit of a critical eye.  If we had a gym would Simon be able to box too?  To his credit he was blowing kisses by the time he was 18 months, so I think that he is doing all right.

Baby Love was a great time.  We got to meet all kinds of kids, including a set of twins.  One who has D.S. and one who doesn't.  That was fascinating to me.  They were both boys, and were in effect quite similar in their capabilities.  We met a baby girl who was almost the same age as Simon.  She had also had heart surgery around the same time, and was doing really well.  There were kids with feeding tubes, and g-pegs, and kids with none.  There were kids who picked their noses and kids that didn't.  There were kids that had temper tantrums, and some that didn't.  It was a great eye opening experience for me.   I was very sorry that I had to miss it this year, but I didn't think that I could manage taking Simon and Elizabeth to Winnipeg by myself on Easter weekend.  I hope that next year I will be able to attend, and meet up with some of the same people and see how their kids have progressed.

I think that will be all for today.  I look forward to hearing from you in any respect.