I'm just a little bit excited. I mean I'm jumping up and down inside because I have realized something.
Let's say that Simon's life is like a trip from here (Manitoba) to British Columbia. When we make the trip, we stop multiple times for multiple reasons. Gas, bathroom breaks, food, and running around, just to name a few. Now, let's say that every hour of travelling is approximately a year of Simon's life. We are now roughly about an hour past Yorkton, Saskatchewan. (I know! What a place to be!) Anyway, for the sake of argument and setbacks and such, let's just round it down to Yorkton. (They've got a Wendy's/Tim Horton's.) We are finally here! By here, I mean at a place where I don't have to pack cheerios and raisins, and food that I know Simon will like, because he will eat anything!!!! I mean anything. This boy is finally in a place where I can give him a real plate, and a real fork, or a real bowl and real spoon, and he will happily play with and/or eat anything that is in front of him. Yes, I cut up his meat into bite size pieces, and I sometimes help him out by putting it on the fork for him, but he will eat. Today at supper he ate beef vegetable soup. I helped him spoon it, and he wore a lot of it, but he ate it. He drank apple juice! We are in Yorkton! We have made it past tube feedings, and spoon feeding purees of oatmeal and prunes. The boy is even getting some love handles. Unless you have had feeding issues with your own kids - by issues I mean more than just picky eaters - you cannot understand the immense relief and joy I feel at realizing that we have arrived. Of course there will be times when we have to go back a couple of minutes or hours because we forgot something, or just past a town with a bathroom, but we are going forward.
All of this progress is not just Simon working hard. Nor is it because I am a psycho mom who pushes him to do what he needs to. Both of those things are true, but none of this would be possible without the grace of God. (Hold your breath, I'm going to be preachy for a bit.) When I look at all the feeding struggles we have dealt with, and how many times I wanted to give up, I want to cry. I may in fact be tearing up a little here. We fought so hard with this kid, and we had so many people on our team. But without the strength that God gave us, we would be nowhere. God gave me strength even before I asked for it. He put the right people on our team, so that when I relied too heavily on them, they gave me the firm push that I needed to try things "normally". I never in a million years would have thought that I would be strong enough, or brave enough to ask our neighbour at the time, who is a pediatric nurse, to come over and hold Simon for me so that I could put his feeding tube back in. I would balked at the idea of doing it myself. I would have asked her to do it. But no, God gave me the strength and confidence to do it myself. (I must brag and say that it was a pretty good placement. He cooperated perfectly.) This is me! This is the kid who refused to take swimming lessons because when they called my name I wouldn't leave from hiding behind my mom's skirt. This is the girl who used to stare at the table when an adult was trying to make conversation with me.
There is no way that I have grown this courage on my own. I am continually amazed at how having Simon in our lives has changed, challenged and stretched us in so many ways that we could not have imagined. I've said it before, and I'll say it again. I wouldn't trade that kid for anything in the world. He is a gift from God, and I look forward to seeing where else he is going to change us, and where else He is going to stretch us.
That's it for now, hopefully you will hear from me again before we get to Saskatoon. (Figuratively of course. Don't get your nickers in a knot if you live in Stoon and don't get a call!)
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.