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, January 23, 2011

Simon's first Christmas and then some

I have been trying to be committed to blogging about once a week, but as you can evidently see that has not been happening.  I have been doing better at adapting to our new life and therefore feel less of a "need" to blog to process our lives - but I still feel like the first year of Simon's life needs to  be shared in order to understand better where he is at now.  So.....

Last Christmas was a lot different that this year.  First of all Simon was still being tube fed.  I was still expressing myself for his benefit, and we were only three months in on the crazy journey.  I strung popcorn for the tree while watching a DVD about the first 18 months.  It was very helpful, and yet very overwhelming at the same time.  I was doing alright in watching it until I got to the part about speech and language.  One professional commented that if a baby with Down Syndrome doesn't nurse or bottle feed properly that will seriously hamper their oral development.  Crazy lady - do you know how hard I tried to do both of those things!!  I still get a bit lonely for the bonding between a baby and mom sometime.  Oh, and by the way lady- my boy says "Da da da" and "Ma ma ma", and "blah blah blah" although not always in that order. I digress.

We had Christmas dinner as a family, and then my parents and brother came in a couple of days later for the family gathering.  It was interesting having my extended family meet Simon for the first time.  At that point he was still tube feeding every three or four hours, so they got to experience that twice in the evening.  The first time being pretty much the moment we walked in the door and started assessing where to hand the feeding bag.  He was still pretty barfy too so that meant that I was still on call for most of the evening.  On the other hand, it also opened up a whole new dialogue between my aunts and uncles.  Simon had taught us not to hedge around the awkward things in life, and just to ask the questions about the obvious things that no one wanted to ask, but everyone wanted to know.  Thank you Simon for teaching us about the joy of being open and up front.

We went to supper at the Froese house a couple of days later, and Simon might enjoy knowing a bit later in life that his feeding bag was hung from a mounted buck's antlers.  I still can't believe how much time I spent expressing and tube feeding.  It was a huge blessing that Andrew was able to help with the feeding as much as he was.  I know he suffered a lot from lack of sleep too.

The fun began a few days before the Froese supper.  We found what no parent should find in their child's diaper.  Blood.  We made an adventurous trip to the hospital and were told that it was probably the virus that was going around and if it didn't clear up in a couple of days to come back.  Well, New Year's Day it came back, and that day Simon did not.  He was admitted to the hospital for observation which is pretty much what we were expecting.  What we weren't expecting was to be given the gears for wanting to go home and get some much needed sleep.  The bad thing about being and open minded person is that you can see both sides of issues.  Yes, the hospital is terribly understaffed, especially at night, and they were expecting our baby to be awake and crying most of the night.  What they didn't know was that at a mere two and a half months old our baby would sleep for approximately 10 hours solid.  We were frustrated when we left, but yet felt very little guilt.  I decided the next day to start staying at the hospital, so we again began the search for volunteers to look after Elizabeth and give rides to and from the hospital. My parents came in from out of town to help out while Andrew went to work.  After two or three days in the hospital I had a breakdown night.  When I arrived at the hospital in the evening Simon had a fever and was what I would call delirious.  He did not want to be held by me or put in his bed or anything.  This was completely unreasonable for our very laid back little man.  I called my nurse friend over from the general hospital, and she came and talked me down as I sobbed out my frustrations.  Janine, you were a lifesaver.  Thanks fore being there to interpret both me and the medical system.  We have always appreciated your words of wisdom.

I had a fitful sleep in the hospital room and I think I called Andrew to pick me up at four in the morning?  I don't remember.  Somehow, I was at home when the phone rang at 6 in the morning.  It was my Aunt calling for my Mom.  My Uncle had died suddenly of a heart attack.  He was a young and vibrant 63.  Then the phone rang again at 6:30.  Simon had been moved to the PICU because he had pneumonia and was having trouble keeping his oxygen levels up.  My mom had just called a nurse friend of hers the night before and had been told that as long as Simon stayed out the ICU we should not be too concerned. 

So we began the week of keeping our head above water.  My parents rushed home to pick up funeral clothes, and we put on a brave face.  The Olympic torch came through Winnipeg and we were late one morning for rounds in the PICU.  The doctor, with whom I had shocked (a little) with my black humor, gave us a good-natured ribbing for being late.  Apparently passing the torch was an acceptable excuse. 

Simon made it out of the PICU just before Uncle Tim's funeral.  The nurses gave us a grudging day off for the funeral, and a friend took Elizabeth for the day and her first co-ed sleep over.  The things I never thought would happen four months prior.  We still feel the loss of Uncle Tim.  He was my favorite uncle (sorry all the others) and he has a great family. 



We began the slow wait of figuring out what was wrong with Simon.  The blood in his stool was gone, but we had to figure out why it was there in the first place.  He was still having episodes of emesis (vomiting) and other than him not tolerating his secretions well (he couldn't handle his snot) we couldn't figure out what was wrong.  It was dragging on and dragging on.  He had a PICC line put in to give him TPN and his fluids were pretty much kept to a minimum.  (He had an IV put in that went near his heart, and it gave him IV nutrition.)
At this point we weren't holding our breath for him to come home anytime soon.  The question was always, how long would it take for us to be together as a family again?

At long last it was decided with the Edmonton team and the cardiologist and the  regular doctors that we should move his surgery date to an earlier time and see if we could get his ticker fixed, if that would solve the other issues as well.  If not, it would at least eliminate one problem.  So, it was decided.  We were going to fly to Edmonton on January 24 and he would hopefully have surgery on January 26.  There were a lot details to iron out, but with the valiant efforts of our variety social worker, we were finally getting there.

I will leave the surgery posting for another day, and be warned, I will include graphic medical pictures.  Just so you know.

Time goes on whether we like it or not.  Let's make the most of the time we have.  Goodnight.

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