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, April 5, 2011

So about the ambulance...

So going back to last year.  Sometime around now was Easter.  Andrew and the kids and I decided to make the trek out to Winnipegosis to introduce Simon to the locals.  He had of course met my parents and his uncle and a few other people that had met him in the city and Brandon, but he hadn't met some other significant family members.  We figured that since I wasn't working, and my mom and dad were moving in the summer, it would be a good idea to spend the week following Easter at the homestead helping with what packing and sorting I could in between tube feedings and taking care of the kids. 

Simon had done really well over Easter, and since we had been to a feeding appointment recently I had been given some new liberty in the food department.  The idea was to challenge him and try to omit some tube feedings to see if he would make it up with real food.

So the thing that some of you may or may not know about me is that I am a bit of a control freak.  This problem increased exponentially when Simon was born.  There was so much more to this baby than just feeding, burping and changing.  I had to keep track of fluid intake to make sure that he didn't get dehydrated.  I had a day planner that I wrote all of these intakes in.  I had medicine measuring cups that I measured his food into so I could tabulate his score.  We were definitely not low maintenance.  Making the trip to Mom and Dad's took a lot of planning and we brought along a lot of extra items "just in case."  You know the standard - spare feeding tube (or 4), stethoscope, feeding bag, syringes, food, bottles, special feeding cup and spoon, breast milk, pump and equipment, and then regular things like diapers and clothes.  We kind of took over the house. 

About the challenge.  If he ate enough at a meal, or three, then we could take out the tube and let him have a break for a day.  We would see how that would go, and then put it back in when he needed it.  Well, he did really well on Good Friday and Saturday, but the thing was, he was so stuffed that he threw up.  It was kind of pathetic the way he did it though.  He just kept eating, and we kept distracting him to try to get more food into him.  Finally, when he could take it no longer he kind of gave me a look.  It was almost a sympathetic, "I know what you are trying to do Mom, but I just can't... "  Barf.  He was really good through it all though.  We kept the tube out for Saturday and he got to go to Easter Sunday without a tube up his nose that had prunes and meat all over the tape that kept it in place.  I could pretend for just a little while that Simon was more like a normal baby. 

You can see the difference.  I must put in a little plug for my photographer though.  The bottom picture was taken by my then three year old.  Not bad.

Anyway, sometime during the beginning of the week Simon started to get a bit sick.  It started with a little cough, congestion and then a fever.  I tried all the tricks.  Tylenol, raising the head of his bed, calling our nurse.  You know that it's time to go in when his fever is 104 and holding.  We went in to Dauphin, talked to an intern, who said it was a virus.  If it wasn't better in a couple of days to come back.  So, a couple of days later we rushed back with a very sick little man.  Bilateral aspiration pneumonia. 

Dad had driven me and Simon in, while Elizabeth stayed with Mom at home.  I sure am glad that I brought my pump along.  I was told that the ambulance would be there within the hour to take us to Winnipeg.  Umm.  But, what about my daughter?  She was still on the farm.  How would I get my clothes and everything else that we had brought?  Supper anyone?  I can't have dairy!  Arg. 

So, we made a few calls, Elizabeth stayed with Mom and Dad and Simon and I enjoyed a nice leisurely ride in the back of an ambulance to Winnipeg.  (I don't recommend ambulance travel unless it's the only way.  Not a nice ride.  Roomy enough, but very bumpy. 

We had some fun at children's hospital and came home to Winnipeg a couple of days later.  I sure was glad to get into my own bed again.  By the next Friday we had figured out a way to get Elizabeth back to Winnipeg without making my parents do an extra eight hour drive.  She sure enjoyed the ride with Audrey and Joel.  Thanks for hauling her around! 

So anyway, that is pretty much it for that part.  More to come someday soon.

One last thing, there is something that I would love to have permanently stamped on my baby's bottom:
I am my own person.  I will grow at my own pace.  I will do all things in my own time.  I love you Mom!

On that note, it's time for bed,
sweet dreams,