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, May 22, 2012

My heart is full :)

Last night I lay in bed trying to fall asleep, and the only thing I could think of was a wonderfully worded introductory sentence for a new blog post.  Guess what.  That was not the sentence I was thinking of.  I've been thinking for a while that I need to do some updating, as some of you haven't heard from me in a while.  Life is chaos, that's why. 

I heard a wise woman once say, that if you wait for the time when things are slower - the kids are in school so you'll have more time, when they move out, when you retire you will have lots of time to relax - those times never come.  It's true.  When summer holidays start up we work in the garden.  We do camp.  We take holidays.  Who has time to do anything then?  I've decided that she is absolutely right.  No matter how fancy my day planner is, there is no page in there that has a stay at home and do nothing day.  Time marches on.

We've made some progress in our life since I posted last.  Last time I was fighting some dragons or discouragement and dissatisfaction with my place.  Now, that is past - for the most part - and we are making strides to a more grown up life.  Simon has been doing really well, which is one of the reasons that the dragons are at bay.  We had a feeding appointment a couple of weeks ago, and today at lunch he DRANK almost a full cup of chocolate milk.  We are making progress.  Granted I still have to hold the cup for him, but he is drinking in his unique way, and not just chocolate milk.  He is drinking water from a cup.  And using a spoon to feed himself yogurt and pudding.  It is a huge mess, but he is so proud of himself

He is sporting a huge bruise on his forehead today from a crash yesterday as he was trying to walk from one couch to the other across the room.  Now, before you all jump up and down and cheer that he is walking - I made him do it.  He still isn't terribly interested in taking steps on his own, but he will do it if I make him.  I know, I should let him do it in his own time, but if I push him he might get there just a little quicker.  I did teach him to crawl properly though.  He used to only crawl if his forehead was on the floor too.  He looked like a little vacuum cleaner or some kind of toy.  Now, if I can catch him and grab his leg so he doesn't bum scoot, then he will crawl.  At first I had to crawl along beside him and hold his leg and alternately push his head up, but now he usually does it right.  His first preference is still to bum scoot, but that's okay, I'll keep trying.

I've been reading the book Bloom, by Kelle Hampton.  It is a very interesting book, and very different from what I expected.  I had first read her blog, and Nella's birth story a couple of months after Simon was born.  I cried.  A lot.  I could relate to a lot of what she was feeling and how quickly the darkness set in.  Now, though, as I read her book, she puts it in a different light.  I'm two or three chapters from the end and I'm just starting to get to the part where she embraces the Down Syndrome community and Nella's role in it.  I'm glad she's finally getting to that point, because I was starting to feel like a bad parent for embracing it right off the bat!  She is very gifted writer, and I wish in some ways that I could write with her eloquence, but on the other hand, I'm just me.  I write like me.  She writes a lot about how she is so in love with her daughters and how they are the best things in her life, and how her friends are so supportive, and so on and so forth.  Again I wondered, am I a bad parent because I don't always feel this gush of love for my kids?  Sometimes I want them to go to bed early so I don't have to answer a million questions about everything.  I was beginning to wonder if I really loved my kids that way at all.  Today though, I had a blast with my kids and loved them over the moon and back.  Simon and I had a date driving to Dauphin for speech.  It was complete with erratic driving as I car dance, and he did too.  We were head banging and rocking it out in the car.  I drove erratically on the way home too, because on a straight highway, with few cars, I could reach back and feed him some delicious fish that my aunt fried up for us.  I didn't feel ashamed of him when we went to the mall.  We cruised through Wal-mart and people commented on his big grin.  I am in awe of the love I feel for my handsome little boy.  He is such a trooper, and such a boy!  So busy, and getting into things, and hiding things, and banging things against walls and doors.  Pressing a toy that makes music and then spinning in a circle and yelling.  So sweet.

And Elizabeth and I have had a great day today.  She played with rice, and I played with her for a bit.  She played dolls by herself and didn't have a temper tantrum.  We had a good day.  We had a blessed day.  My heart is full of love for my kids, and their dad, and our future.  No matter what it holds we will keep trucking as we can.  We look forward to milestones, yes, but we embrace the journey and the joy that goes along with the little steps, the chocolate milk, and the dolls.  I can sleep well tonight.  My job is done, and done well.