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, June 2, 2011

The appointments

So the last you heard from me was about the hospital adventures.  Since that point in time we moved to a "new" area in both life and work and geography.  Andrew accepted the call from my parents church (also my former home church) and agreed to become the pastor there.  It was a long journey.  A year from the time they asked us to the time that we were able to say yes.  We eventually packed up all of our belongings and moved to our wonderful new home.  We had quite a few loose ends to tie up in Winnipeg including but not limited to Simon's medical support team.  We had to transfer which RHA we were in and make sure that we were covered.  We snuck in some last minute appointments for assessments and the like.  That is what this is all about anyway.  The assessments and the like.

A wise friend on mine made a great comparison about appointments and dentistry.  More on that later.
When Simon was born we were seeing loads of specialists for his many challenges.  None of those challenges will ever entirely disappear.  Eating will always be an alert on our radar.  Not so much for the extinct tube feeding, but as he gets older we will have to watch that he doesn't get overweight and also keep an eye on his thyroid function.  The only thing that might become a non-issue is allergies.  We hope that he will in time outgrow his milk allergy, but until then, we will keep testing him every six months or so and see where he's at. 

I digress again.  When he was born he was assigned a physiotherapist and an occupational therapist.  (The OT was for those odd jobs that newborns get on the side :) Anyway, there was always this pressure to push him harder and get him to be the best that he could be.  And the questions - "Can he roll over?  Does he go from right to left or left to right?  Is it always the same direction?  Do you think that his one eye drifts a little outward or is just the way it looks right now?"  I am very glad that I started to write down what he was doing and when and in which direction.  All of these are very important details that every mother must know!  (Just a little tongue in cheek if you missed it.)

So after getting the third degree about what he was doing and how far behind he was, going to appointments became a bit of a challenge for me in several ways.  The first challenge was to see what I could teach Simon to do before his next appointment.  I was always watching to see what I could catch him doing so I could be ahead of his therapists when it came to question time.  The second challenge was to maintain a good head space.  After leaving an appointment in which there was this albeit professional assault on my little man, I had to ensure that I did not get down on myself or Simon.  He was doing his best, and I was doing the best that I could under the circumstances.  I had a lot of things going at once, and it was hard to make time to work on the intricacies of doing therapy with a baby.  There was a lot of pressure going to these appointments, and a lot of it seemed like it fell on me.  Like my wise friend suggested, when you are the person in charge of brushing and flossing your child's teeth, it reflects back on how well you did.  If you have an eight year old with a cavity, that is probably because they are not brushing or flossing, but if your two year old has a cavity, the dentist probably isn't going to think that the child wasn't doing a good job of brushing - it was you!  When Simon didn't do very well at one appointment or another it was not always because of him - it might have been because of me. 

Just before we made our move, we had an assessment with the child development clinic.  The doctor did all kinds of little things that seemed very simple, but helped her peg him into a certain time frame of development.  It was wonderful to speak with her afterward and find out where she thought he was and what he was good at and what was still developing.  Never once when I was listening to her did I ever feel like I wasn't doing enough for him.  At this point he was seven months old and she pegged him at roughly a three our four month old development.  I figured a few months behind considering heart surgery wasn't very bad at.  When we got the written copy of the report in the mail, there was this warm blanket right out of the dryer feeling that I got.  Her wording was excellent and always encouraging.  "Simon presents as a petite sociable and very alert little boy."  I could still read it over and over again.  In places where he hadn't shown her what we said he could do, there was no doubt in her wording that he had indeed accomplished these skills.  

As Simon got older it got harder to be a part of his appointments.  When I first met our new PT from Dauphin, I thought she was great.  (I still do!)  But, it was hard to watch someone else analyze my child.  It was great to know on the scale or motor skills where he was, but it was also hard to drive back to camp that afternoon and hang out with regular kids and not be discouraged because Simon needed to work so much harder to accomplish what he could. 

It sure makes those more "insignificant" milestones a whole lot bigger.  When he first said, "ba ba ba" I did tear up just a little.  I was on the phone with my dad and I am very thankful that he was able to hear it as well, or else I might not have believed it myself.  I had a goal of Simon sitting up on his own by Christmas time, and he was doing that and waving bye too!  These developments seem so small, but they are such accomplishments for the little man.  I met a mom at the Variety Heart clinic in Winnipeg when Simon was just a baby, and her little girl with Down Syndrome was crawling around on the floor with her sock in her mouth.  I had to take a moment to regain my compose when I was talking with her because I was thinking about how hard it was going to be for Simon to learn all the things that he would need to learn.  It is incredibly difficult to look at your innocent little boy and know that there are going to be some gigantic mountains that he will have to overcome in life as a whole.  Oh, how I wish I could pave the way for him and hold his hand forever until he learns to walk on his own.  But I know that doing that would slow him down even more.  He has to climb the mountain on his own.  He will have to learn to take steps by himself without me supporting him.  Watching him take on the world one person at a time is gut-wrenchingly painful and yet one of the best things about being Simon's mom.  I get to watch as he transforms a family that once knew nothing about challenges of the developmental variety.  I get to watch the way kids look at him and answer when they ask why his tongue sticks out.  Sometimes it hurts and sometimes the clinical coldness kicks in.  I am looking forward to the day in heaven when I can meet my son with his full capacity and together walk hand in hand toward our maker to worship forever.  To know him as he would be if we were born into a perfect world without genetic "glitches".  Oh, I hope that I have the patience to endure until that time comes.