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.

Sunday, November 13, 2011

What to do about....

I'm late!  That's right, not on time.  No, not pregnant, just chronically late.  I'm the pastor's wife and I got into church three minutes past eleven this morning.  Hmm.  Time to do something about that. 

In our Bible Study on Wednesday mornings we are studying a book about how to find our vision.  It has been very inspirational and challenging.  In a good way.  I have made some short term goals, and accomplished some of them, and still need to work on others.  But, I am slowly trying to be more organized.  Not just in tidying things up around the house, but in life.  I have a day planner which I am actually using!  I have the components for menu planning set up on the dining room table.  I have a plan.  But here is the rub -  I am not consistent. 

Simon has been doing really well lately.  He is into signing again, and his appetite is back.  The problem is that I keep forgetting to try the things that he is not good at.  It's like politics.  If you don't vote, you don't get to complain about the government.  If I don't practice teaching Simon to drink, then I can't complain that I've been spoon feeding him for the past 21 months.  Man that stinks.  I keep telling myself, that I won't bee spoon feeding him when he graduated from high school.  But, if I never work on having him learn, then maybe I will. 

I have finally given up on the dream that I have of my perfect little life.  No, not all of it, but the dream that I can be done the dishes in the morning after breakfast and play with my kids for the morning, meanwhile fold the laundry in ten seconds flat and put it away.  Have supper on the table by five o'clock, and the kids sleeping peacefully by eight.  That is not going to happen in my life consistently.  Some days, I don't even get the beds made before it is time to climb back into them.  I still would like to be a fly on the wall in the house of the super moms that I know.  What is missing that I don't see?  There's gotta be something that gives.  Right:?

On an unrelated note... the past two nights when I have tucked Simon in when I go to bed (he stays awake after being put in his bed at eight until sometimes nine-thirty) I have had to unfold the dear boy.  He is literally sound asleep folded in half.  God has given us a very wonderful little boy who is teaching us to be flexible.  Thankfully only figuratively. 

A lot has changed since my last posting.  I have given up on recapping the last year and have decided to move on, and if anyone has questions about when Simon started doing certain things, then they can always ask. 

We went to Baby Love in Winnipeg in October this year.  What a treat!  The kids there were super sweet, Elizabeth wasn't quite as shy, and neither was I.  I think my favorite part was listening to the conversations around the room and hearing words like occupational therapist, physiotherapy, speech and language pathologist, and feeling perfectly at home.  I wasn't the only mom comparing notes.  There were four or five other kids Simon's age and they were in about the same place.  One little boy had just started walking a couple of months earlier.  And I won't post it, but I took a video of Simon playing the rhythm sticks.  He is yelling as loud as he can, and you can hardly hear him because the woman with the guitar is playing and singing, but everyone is having a good time.  Then he stops, looks around and checks what everyone else is doing, and starts up again.  It is a new step in his development.  He is copying.  Big time.  Which means that signing is back on his radar again.  He has picked up more (again), please, Daddy, praying hands (which is really cute because his fingers don't all space properly so he has some doubled up), and I'm trying to teach him excuse me.  As a boy he already knows that after you pass gas you must laugh.  I am trying to increase my signing vocabulary so when I listen to music I quickly flip through the dictionary and find the signs for the songs.  Simon will sit and watch me intently until he sees me doing a sign that he thinks he can do, and then he just kind of makes up his own to match.  It is really sweet. 

Some days it still takes my breath away to think about how far we have come.  Elizabeth is big into asking me to tell her stories about when I was a little girl.  Today she asked me to tell her a story about when she was a baby in the hospital.  I had a hard time coming up with anything.  We went into the hospital with a big belly, had a baby, and were home again in 11 hours.  Not much worth telling happened in between.  It is a struggle sometimes to watch and see how Elizabeth is dealing with Simon and the attention that he gets.  Most days she does really well, which scares me a little.  Is she hiding how she is really feeling?  Will we find out at a family debriefing session in twenty years that she was actually jealous of Simon for most of her life?  I try to be fair, not equal with the time I spend with the kids.  It is a hard balance sometimes, and I can only pray that I am getting it as right as I can, and that if I'm not, someone who loves me will give me a hint. 

I had been debating about what to do for Simon as far as school next year.  He will be turning three next  October so he will be able to be in the three year old class.  I wasn't sure about him being so young, but when I saw him there playing with the kids and toys, I think he will be fine.  I put some feelers out at Baby Love too, and no one that I talked to had held their child back, so I think I will follow suit.  His teacher will be excellent, and may also wind up working with him in the elementary school as well.  We'll see how it all shakes down by then.  I am looking forward to seeing how far he will have progressed in this next year.  When I think that last year he wasn't sitting by himself yet, and now he is almost trying to walk it amazes me. 

I have been so blessed with my family, our home, our community and our church family.  The support has been incredible and I love the frankness.  I want to be the kind of person that someone can walk up to and say, "Can I ask you a question?"   I want to be approachable.  I hope that people who know me feel free to ask any questions about Simon or our family.  My friend's little boy asked her one day, "Why does Simon's tongue stick out?"  That is a great question.  The answer is that he has a smaller jaw than average, and his lower muscle tone also affects his tongue muscle.  I love being a Down Syndrome encyclopedia.  We met with Simon's new OT and PT last month and I wish I had set up a hidden camera.  I had met with his OT at the school by accident and so she knew that I knew my stuff.  However, this was the first time that I had met his PT and so like most professionals she assumed that I wouldn't understand the big words.  I had asked her about trampolines and if they were safe for Simon and why or why not.  She explained a couple of reasons ad then started to explain about the possibility of there being some neck problems.  "You mean atlanto axial whatever?"  Her face was priceless.  She stopped.  Looked at the OT who reassured her, "She knows her stuff."  She still looked shocked after a few moments, but eventually resumed a normal expression.  After that though, the tone changed, and she seemed to have accepted that I was part of their team, not just along for the ride.  I really enjoy being in that place.  Part of it is just to take people by surprise, but mostly because then I know that they know that we are all working together, not just independently. 

Ah yes, but I look at the clock, and it tells me that I should wind down (pun may be intended) so I must be off.  Into an unmade bed, but hey, at least I got something productive done with my time.  I hope you have enjoyed my ramble, and as always, I love to hear comments.  Talk to you later,