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.

Tuesday, September 17, 2013

The Conference

So, I am apparently a few months behind in my posts, and that means that it is time to catch up before I forget where we have come from.  I am thinking back particularly to May.  In May my mom, Simon and I made a trip to Winnipeg that would change our lives!  (I'm being a bit dramatic here, but really it was life-changing.)

The three of us attended the 2013 Down Syndrome Conference.  I remember being super excited as we pulled out of my parents' driveway, and thinking, "I'm gonna make sure I mention this part in my blog."  I was so excited for a few reasons.  I was pumped to go on an adventure with my boy, and my mom where no one in our family had gone before.  Sure we've done trips to Winnipeg before, and yes, Simon and I have made the trip with an extra adult who is not Andrew before, but this was different.  We were going to learn specifically about Simon.  He was going to be the spotlight, not just the appointment.

We have had fun at Baby Love in the past (a fun event for families with children who have Down Syndrome) and we've made contact with new people and become friends, but this was bigger.  This was trailblazing where the Wiens family has never been before.  (Cue Star Trek music.)

We listened to the Vinyl Cafe on the way to the city, and laughed until we cried.  (That means we had a great trip.)  I drove to my midwife appointment with my mom and Simon (a huge deal for a small town driver), and then dropped my mom off at my aunt's house.  Simon and I settled in at our friends' place for night and we were set.  Of course I had a terrible sleep because when you know you need to wake up at a certain time in order to be on time, you have to wake up ever couple of hours to make sure your alarm clock is set.  Right?  That and the fact that I was 7 months pregnant combined to give me a very long night.  Sigh.

Simon and I got to the bus stop on time, we watched cars drive by, we rode the bus with no problem, walked downtown to the hotel where the conference was without getting sidetracked, and we were swimming.

We walked up to the hotel and I spotted (as I suspected I would) a person with Down Syndrome.  She and her friends (who also have DS) were walking to the hotel talking about what they were planning to attend that day.  They commented on Simon and how cute he was, and we walked into the hotel.  We were surrounded.  Sink or swim I was at the conference and I might cry in public.  That was really one of my concerns going to the conference.  I was concerned that I would cry at a strange time and people would wonder what was wrong with me.  I'm not gonna lie, I tear up during some commercials, do the thought of crying because of some random event made me a bit nervous.  I didn't want to be that pregnant woman sobbing in the corner.  Nope, I wanted to take it all in.  Learn as much as I could.  I knew if I teared up I might start crying loudly and awkwardly and not be able to stop.  I might miss important bits of information that could help Simon talk sooner or something like that.  I had to pay attention.

We met up with my mom and then dropped Simon off at the childcare area.  I think that was one of my favorite things about the conference.  I didn't have to worry about chasing him around.  I could sit, put my feet up and learn.  Anyway...... the conference started with the opening ceremony.  There were flag bearers and a conference room full of people who were there because they had children with Down Syndrome or were educators wanting to learn more about how to help our kids in schools.  I fit in.  It was a strange feeling to know that we were all united by this crazy chromosome, and had so much in common, and yet we were all so different.  We sat at a table with a lady from England.  She made the trip to Canada just to attend the conference.

And I didn't cry.  Not the big messy scary tears that I thought might happen.  Just some tears that managed to sneak out a bit when the keynote speakers were talking.  The first keynote speaker was Lauren Potter who is on the show "Glee".  What a feisty girl!  She had us laughing and cheering.  I was amazed at how clearly she was speaking.  The only adults that I knew with DS I had a hard time communicating with because it was hard to understand what they were saying.   She did a great job of presenting and encouraging us with her stories.  The second speaker was a doctor of something (baby brain) and he made me cry because of a story he told about his sister.

Speaking of sister, I must run now because the big sister just got off the bus.  More about the conference later.

Saturday, March 2, 2013

We are here, and we are getting there.

I'm just a little bit excited.  I mean I'm jumping up and down inside because I have realized something.

Let's say that Simon's life is like a trip from here (Manitoba) to British Columbia.  When we make the trip, we stop multiple times for multiple reasons.  Gas, bathroom breaks, food, and running around, just to name a few.  Now, let's say that every hour of travelling is approximately a year of Simon's life.  We are now roughly about an hour past Yorkton, Saskatchewan.  (I know!  What a place to be!)  Anyway, for the sake of argument and setbacks and such, let's just round it down to Yorkton.  (They've got a Wendy's/Tim Horton's.)  We are finally here!  By here, I mean at a place where I don't have to pack cheerios and raisins, and food that I know Simon will like, because he will eat anything!!!!  I mean anything.  This boy is finally in a place where I can give him a real plate, and a real fork, or a real bowl and real spoon, and he will happily play with and/or eat anything that is in front of him.  Yes, I cut up his meat into bite size pieces, and I sometimes help him out by putting it on the fork for him, but he will eat.  Today at supper he ate beef vegetable soup.  I helped him spoon it, and he wore a lot of it, but he ate it.  He drank apple juice!  We are in Yorkton!  We have made it past tube feedings, and spoon feeding purees of oatmeal and prunes.  The boy is even getting some love handles.  Unless you have had feeding issues with your own kids - by issues I mean more than just picky eaters - you cannot understand the immense relief and joy I feel at realizing that we have arrived.  Of course there will be times when we have to go back a couple of minutes or hours because we forgot something, or just past a town with a bathroom, but we are going forward.

All of this progress is not just Simon working hard.  Nor is it because I am a psycho mom who pushes him to do what he needs to.  Both of those things are true, but none of this would be possible without the grace of God.  (Hold your breath, I'm going to be preachy for a bit.)  When I look at all the feeding struggles we have dealt with, and how many times I wanted to give up, I want to cry.  I may in fact be tearing up a little here.  We fought so hard with this kid, and we had so many people on our team.  But without the strength that God gave us, we would be nowhere.  God gave me strength even before I asked for it.  He put the right people on our team, so that when I relied too heavily on them, they gave me the firm push that I needed to try things "normally".  I never in a million years would have thought that I would be strong enough, or brave enough to ask our neighbour at the time, who is a pediatric nurse, to come over and hold Simon for me so that I could put his feeding tube back in.  I would balked at the idea of doing it myself.  I would have asked her to do it.  But no, God gave me the strength and confidence to do it myself.  (I must brag and say that it was a pretty good placement.  He cooperated perfectly.)  This is me!  This is the kid who refused to take swimming lessons because when they called my name I wouldn't leave from hiding behind my mom's skirt.  This is the girl who used to stare at the table when an adult was trying to make conversation with me.

There is no way that I have grown this courage on my own.  I am continually amazed at how having Simon in our lives has changed, challenged and stretched us in so many ways that we could not have imagined.  I've said it before, and I'll say it again.  I wouldn't trade that kid for anything in the world.  He is a gift from God, and I look forward to seeing where else he is going to change us, and where else He is going to stretch us.

That's it for now, hopefully you will hear from me again before we get to Saskatoon.  (Figuratively of course.  Don't get your nickers in a knot if you live in Stoon and don't get a call!)

Wednesday, February 13, 2013

There's a bun where?!

Ha!  I got your attention with the title.  As those of you on Facebook may have already realized, we are adding to our little family of four (and a dog) hopefully in early July.  I just had my ultrasound today, and things look normal and cute.  I just love watching the little person wriggling around on the screen.  If it weren't for the angle of my head, I would pay to watch it all day long.  It's so easy to take care of a little person when all you need to do is feed and water yourself.  Throw some vitamins in for good measure, the odd bit of exercise and hope for a good sleep once in a while.  Not much to it.  Once they come out however.....  That part has me a bit nervous.  It's been almost 6 years since I've had a "normal" baby to feed and take care of.  In some ways I discredit Simon as a baby experience because he came with an owner's manual of sorts that told me how much to feed him and how often.  He had so many people keeping track of him, that I really didn't have to do much thinking for myself.  Now I'm going to have to try to remember how to feed a baby without disintegrating, and keeping the baby's gas at bay.  (Tube feeding has it's benefits!  You can pull the burps out and get a gas free baby.) 

Yup, there are many things that I am a bit anxious about having to remember or relearn.  If I had more energy I would aim to do lists of things before said infant enters the external environment and demands more attention.  Sadly, my energy is fairly low, so that limits my ambitions quite a bit.

I finished reading Andrew's cousins blog book a couple of weeks ago, and had my head full of the large words that are common in his vocabulary.  For a couple of days I had "cacophony" stuck in my head.  I had so many amazing posts that were rolling around between my ears, but not a spare moment to put proverbial pen to paper.  That is the loss of a writer with an active family.  Speaking of which - I had some specific things I was going to write about this evening, but there are only one or two thoughts have bothered to remain contained within my grey matter.  (Myron's words are coming back to me!)

Lately I've been noticing Simon's sense of humor.  After he is done his meal and he signs, "Thank you" and "excuse me" he gets this twinkle in his eye and a silly grin on his face.  He waits until I have the washcloth wet and ready to clean him up and then he hides his hands behind his back in the chair.  He says, "where" which comes out as "deh" but I know what he means.  Then I have to hunt for his hands.  He thinks he's so funny!  I love our little game.  I can't wait to see what other kinds of jokes he's going to play.  (I mean other than let's hide my big sister's library book under the fridge and watch Mommy search the entire living room, dining room and kitchen for it.) 

He's also taken to closing doors.  This could be a really good thing, or maybe not so helpful.  He is now tall enough to finally be able to just reach the doorknobs the pull the doors closed.  So far it's worked out alright at home, but on Christmas Eve, he almost had me panicking.  At that point he wasn't pulling the doors closed, he could just push them and lock himself in somewhere.  I left him milling through the festive crowd at church, and noticed that I couldn't find him.  I looked in the usual spots, and even the unusual ones.  Someone kind of chuckled at me for checking toilets, but really - if he had fallen in....  Anyway, I looked and looked and got a couple of other people to help me look too.  I was ready to announce that he was missing and it was an emergency when I decided to check the most obvious place.  I had noticed earlier that the cry room door was closed, which in my head at the time eliminated it from the search area.  Now however I had that last stone to turn over before I gave in to full fledged panic.  I opened the door, and there was a very sad wet face staring up at me crying hoarsely.  The poor guy had people standing right outside the door and they didn't hear him crying.  I was so thankful that nothing had happened to that little stinker.  I can't even imagine how it must feel to have a child really go missing, and for days on end.  Stay safe little ones.

In other growing up news, his signing vocabulary is now up to close to 160 or so.  He's also working on perfecting the signs so that they don't look quite so similar and are actually gender specific.  "Mom" is no longer the same as "Dad".  So glad we got that straightened out.  He is also  starting to talk a bit more.  He is saying "Mom" exactly like it I spelled it.  I'm also very happy to no longer be "Bum" or "Bub". 

One final brag item before I take myself to see the sandman - Simon loves to do laundry!  He had a temper tantrum the other day because we weren't doing laundry in the correct order.  Usually I get him to start helping after I've done one load in the washer.  Then he helps me move the wet clothes into the dryer, and press the button.  After that we dump more clothes into the washer, add the soap, pull the knob and check to make sure the water is running.  This time I had a clean load done, and was only taking items out of the dryer.  We put clothes into the washer, but there was nothing yet to put into the dryer.  The poor little guy was so devastated that he couldn't put stuff into the dryer and press the button.  Oh the trials of being a three year old stay-at-home child. 

Thanks to everyone who's been reading these very sadly random posts, and we continue to welcome your comments and prayers as we journey down this road called parenting, and up the down escalator with our family.  Thankfully I've been blessed that I've somewhat moved from going up the wrong escalator to just walking the wrong way on the moving sidewalk.  I think we might actually be gaining ground as we travel along.  I still have moments where if I stop looking and moving forward I get mired down by watching other kids his age do normal three year old things, but I think I'm still hanging on.  Most of the time. 

Thanks again and until later,