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.

Friday, January 27, 2012

Show and Tell

So, in the last several months Simon has become a bit of a social butterfly in a sense.  In November, Elizabeth was the kid of the day in preschool.  This means that she gets to open doors for the class, be the leader down the hall to the gym, and bring in a show and tell.  Well, we had a terrible time trying to find a good show and tell for her.  She kept suggesting some cheap McDonald's toys, which I balked at.  I suggested things that were far to big or unruly (our dog), and finally suggested Simon.  The night before being kid of the day, she said, I think I want to bring Prince along.  Fine.  (Maybe the dog will die in his sleep?)  In the morning though, when she got up, she had changed her mind, and decided to bring along the somewhat more cooperative Simon.  It was a great morning for him.  We went in, he sat on my lap for the first while, and then got restless and decided to scoot everywhere and check out the toys.  The kids loved him, and had the usual four year old questions for Elizabeth.  "Do you like to play with him?  Does he play with your toys?"  Elizabeth gave them a bit of helpful information about how you have to be gentle with him because he has Down Syndrome.  The teacher helped out with giving them more information and they seemed to accept that as normal.  The kids really liked looking at his scar.  They thought that was pretty neat.  I only teared up a little bit once, when I thought about how these kids would be a couple of grades older than him, and would be possibly his buddies in the future.  How will they accept him?  Will they tease him?  Will the kids whose parents teased me tease Simon too?  I sure hope not, I sure hope that things have changed since the last generation, but who knows. 

When we went to the Christmas concert for the school, the grade one class, did the nativity.   It was quite sweet, and well laid out.  The angels reverently walked on stage with the sparkly halos.  The first four were very dark angels, with a few blondies in there for good measure.  The last angel has Down Syndrome.  She walked calmly to her place at the end of the line, and stood patiently waiting for the rest of the cast to arrive.  My cousin has this theory (and I tend to agree,) that people with Down Syndrome are a little bit closer to heaven than the rest of us.  They don't see the differences in people like we do.  They are somewhat more innocent.  While I realize this is making a broad generalization, in most cases it seems to be true.  So back to the angels....  The shepherds made their appearance, and went to the appropriate spots, and then the star appeared, and the wise men entered.  The angel at the end, the gifted one, pointed it out to them as they walked on.  Oh the innocence.  I started to tear up then.  Of course she is pointing the star out to them, she is closer to heaven and can see it better.  Then the music changed and they filed around the manger in the center of the stage ad began their exit.  The angels walked serenely past the manger in the proper order without a fuss.  Then the last angel walked up to the manger and stopped.  She stooped down to gently touch baby Jesus on the head.  I wouldn't have been surprised at all if she would have kissed him.  The tears started rolling down my cheeks.  The audience held their collective breath to see what would happen.  I just thought to myself, of course she stopped to say hi, she missed him.  Then, with a start, she realized that she was the only one left on stage.  People started to clap and cheer, she gave a quick little bow and ran off the stage.  It's a good thing everyone was cheering, or else people would have wondered why I was crying so much.  It was beautiful in it's symbolic way, and amazing to me, that these very people, who a generation ago, would have teased my cousin with Down Syndrome, were now applauding the beautiful angel.  Maybe there is hope for the world after all. 
video

Simon recently had the opportunity to teach some high school students about people with Down Syndrome.  We were invited to speak to a class about the challenges and daily life that Simon deals with.  We talked about his feeding tube, his therapists, his heart surgery, and general life information.  It was very neat to see them interacting with him, and to be able to read their comments afterward.  I gave them all printouts of the most recent blog postings, and they had to write a response to them.  I was very encouraged to see that some of them had no idea that people with Down Syndrome could be so smart that they could go to college.  I really hope that by the time Simon graduates, he will be interested in pursuing more schooling, and not just be joining the day program.  I really would like to institute some change in that area before he gets there, but that is a whole other can of worms.

So, I do have to put in two brag notes before I sign out.  One is that Simon is starting to take steps.  He is slowly working on this new skill, but we'll see how long it takes him to actually get up in the middle of the room and walk.  (I have a lot of videos and pictures of him doing some of the same things, because it takes him so long to master a skill, that I've already forgotten that he has done it already!)  He has done 6 steps now, but it is unfortunate that the times that he likes to walk the most is right before bed.  Too bad therapists don't come to our house at 7:30 or 8.  Oh well, I have video proof, it just isn't working to upload right now :(

And, the other brag note, is that he is starting to eat better in some respects.  We had a wonderful meal the other day, where I could just give him the food in the bowl, and he tried eating it.  And he was drinking from the sippy cup!  I know it seems like a small benchmark, but when you have been spoon feeding a boy for almost two years, it is huge progress.  We have had another meal since then that he has been able to enjoy like a big boy.  What a treat!  Hopefully very soon he will be cleared to drink cow's milk, and then we can feed him more options of regular food.  Oh the things we could try.....