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.

Saturday, October 20, 2012

Five months!

Okay, so really, I need to get into the habit of doing this on a more regular basis.  Five months is far too long to go without updating you on our adventures.  When I look back at my previous two posts, I think about where we are now in comparison.  I can't even find something to compare it to our progress is so great.

Last time Simon was just starting to drink from a cup.  As far as drinking and eating goes, we are sadly in almost the same place.  He has his good days and his bad.  He likes to drink water right before bed.  (He has already learned that if he signs for water, it will get him out of his bedroom again.)  Some days I am amazed that he can survive on cheerios, raisins, chocolate milk and peanut butter.  Granted, those are the four food groups, but lets get some variety in there!  Then there are days when he gobbles up meat and some veggies.  Those days I feel like I am feeding my son what he needs. 

In other areas we have made several leaps and bounds.  His signing vocabulary is increasing exponentially.  He now has over 120 signs that he uses both to copy me, and independently.  There are however a few problems with this.  There are multiple signs that he uses that look exactly the same.  They aren't supposed to, but the way he does it, hot and handsome look identical.  Yes, I know they can both be used to describe some people, but I'm talking hot as in temperature.  The other morning, after Elizabeth got on the bus, I asked Simon what we should do.  He signed "dog".  This made perfect sense because that is what we had done the evening before.  We had taken the dog for a walk as a family, and he wanted to do the same thing.  He is getting so smart!  His favorite signs are cheerios, bed, shoes and milk.  I can tell that his hearing isn't as good as it should be, because when I tell him it's time to go to school, he will sign "cold".  Maybe he is alluding to the cold sterile environment with the tile floors and fluorescent lighting......I think he just can't hear it properly.

He really does love school.  He has an integration worker, who also happens to be our respite worker.  He has my cousin as the preschool assistant.  My cousin had a younger sister with Down Syndrome, and has work experience with adults with Down Syndrome.  His preschool teacher is also involved with another child with Down Syndrome, and she is doing signing with her.  It's my dream team.  I can't wait to see what he will be doing at the end of this year.

He is walking around everywhere!  There is no stopping him now.  Any open door is an opportunity for adventure.  Whether we opened it or not.  I am not looking forward to the time that he discovers the motion doors at the mall.  I am seriously beginning to rethink my stance on the leash idea. He is again working hard on what his therapists are wanting him to do next.  This is what we want him to do next.  So he does it.  What do we do for the other two weeks until the next appointment?  Walking backwards?  Done.  Crawling?  Done.  Jumping?  We'll work on that one. 

Intellectually he is moving right along.  A month ago he could barely get one piece of a puzzle in with help.  Last week he did four out of eight pieces without help.  He finds a sticky note on the floor, walks to the garbage, opens the door and then the lid, puts it in, closes the lid, and closes the door.  Oh dear!  Where did I leave my watch?! 

He loves our dog.  Elizabeth used to be terrified of dogs.  Who am I kidding?  She is still scared of them most of the time.  When we bring Prince into the house, Simon will pull on his leash to get him to move.  Poor dog.  Maybe the choke collar isn't a good idea.  If he gets knocked down, he will just stand up and keep trucking after the dog, signing dog and saying, "woof".

Talking is another thing that we are working on.  He is almost at that stage where it is really fun to make him repeat words.  I remember getting little kids to say refrigerator, or hippopotamus.  The way that Simon says Elizabeth's name is either a "Dee"  or a "Eh" with a shake of his head.  He will say mom and dad, and today it sounded like he said, "milk". 

I had a million and one things in my head as I was washing the dishes that I was going to tell you about, and of course, now they are nowhere to be found.  Maybe getting a few extra hours of sleep in a night will help this memory loss.  On that note, I should hit the hay.  Thanks so much for keeping up with us, and I apologize again for my random postings.  I aim to be more consistent.

Thanks again,
Sara




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.

Tuesday, March 20, 2012

My life as a fairy tale

Once upon a time there lived a beautiful princess named Sara.  This is somewhat meaningful since her name means princess.  In her castle there also lived a handsome prince named Andrew.  He worked hard day and night to tile the bathroom, renovate the house and get sermons on the table (pulpit) for Sunday.  In this castle there were also two small mice named Elizabeth and Simon.  We'll call them mice because if we call them prince and princess that causes so much confusion, and if Elizabeth finds out that she is a princess just think of the drama!  They also had a dog.  His name was Prince.  (I'm not even kidding!)  This happy little family did all the things that usual happy little royalty does (or is it did?).  Oiy.  Time to switch to present tense. 

So some days my life does feel like a fairy tale.  I fall asleep in my comfortable bed knowing my kids are sound asleep in their comfortable beds, and no one is going to sneak into our house in the middle of the night to steal them away to become child soldiers.  I wake up (some mornings) to the sound of two beautiful children playing together in their room and giggling away.  Just to clarify - I do wake up every morning, just not always to the sound of joy. 

I am doing a Bible Study with a group of moms and we are studying the book, Captivating by John and Stasi Eldridge.  In a chapter a few weeks ago she mentioned that we do live in a fairy tale.  In every fairy tale there is a wicked witch or big bad wolf trying to mess things up.  What is life if we don't have trials to make us stronger and realize that we can slay the dragon or build our houses out of bricks.  Without diversity and challenges we would be bored and weak.  I like her point.  Especially given the life that I live.  I deal with discouragement, self-doubt, anger, and so many other things in life that I just don't want to.  Today is a day that is all piles up in a heap.  Why?

Six years ago today, probably around this time I was in stirrups in a hospital having my dead baby scraped out of my uterus by a woman I had only met once before.  I had miscarried my first baby several weeks earlier, but it was one of those rare cases where my body didn't expel the baby naturally.  So there I was on the first day of spring wishing I were somewhere else.  The loss was not easy at the time in any way.  My knight in shining armor didn't know what to do with me.  He was at a loss as to why one day I would be "fine" and the next day be upstairs lying in bed crying.  There was a girl in our youth group who hadn't heard the news and came up to me and asked me how excited I was to be a mom soon.  That didn't hurt, it was more awkward for her.

Now, the first day of spring always reminds me of the joy and sorrow. If that baby had lived and been carried to term, where would we be now?  I have no idea.  What made that miscarriage the most difficult was that it was our first child.  I had no other baby or child to cuddle with and be glad that I had at least one child.  We had our beautiful daughter 11 months later.  Then when I was pregnant again after about two years, I miscarried again.  This time it was normal.  Not less painful, but no stirrups.  I went to the bathroom, and looked down and realized that was more than just some spotting in the toilet.  I had a piano lesson in a few minutes, so after strongly advising Andrew to not let anyone into that bathroom, I taught a piano lesson and then went back into the bathroom and picked my baby out of the toilet.  Two days later Andrew's parents came to stay with us for the weekend.  We went to church like everything was normal, and again I saw more than spotting in the toilet.  This time I had to let it go.  I could not bring myself to reach into a public washroom toilet and find a bag to put it in.  Sorry this is graphic, but I'm spilling my guts because today that is what I need to do.  I can move through the losses because I have hope, now we have been blessed with two beautiful children. 

That's all I'm going to say about miscarriage for now.  That's the story.

My fairy tale continues.  So, a big bad wolf howling at our castle is Down Syndrome.  In some ways though it doesn't quite fit the criteria.  Because we welcome this wolf in.  If we didn't we would be ostriches and incredibly unhealthy.  But the wolf wants to label our son.  He wants to limit him.  Put time restraints on him.  He wants to steal the joy of his smile with the reminder of the potential dental problems that we may face.  (No pun intended.)  The big bad wolf howls that Simon will be teased and not included and in kindergarten FOREVER!  NO!  I say.  Be gone you wolf or wicked witch or whoever you are.  I know you.  I know who you come from.  You are not welcome here.  You can't hide under the couch because we will hunt you down and send you out!  Down Syndrome we have and will until death, but the wolf part does not have to be. 

I'm asking for help.  For encouragement.  Some days are great!  Some days are just days.  But the more that we can be told that we are doing well and doing our best, and that Simon is great and wonderful, the better that is.  I'm not looking to pad our egos.  I just need to be reminded on those days that things are good; that they can only get better. 

Someday my "real" prince will come.  He doesn't wear shining armor or ride a horse.  He wears sandals and rides a donkey.  He works with wood, and even died on it.  But he rose again and is coming back for me.  He is coming back for the ones that love and serve him.  If you don't want to hear this I'm sorry.  I made a disclaimer at the top of my blog that I am inviting you into my head.  Jesus is in my head.  He is in my heart, and if that makes you uncomfortable..... 

Thanks for listening to my pain, and rant, and Billy Graham speech.  Thanks for taking the time to read and learn and grow with me.  Happy first day of spring (with a quivering chin and tears in my eyes).  The daffodils in heaven must be beautiful. 

Friday, January 27, 2012

Show and Tell

So, in the last several months Simon has become a bit of a social butterfly in a sense.  In November, Elizabeth was the kid of the day in preschool.  This means that she gets to open doors for the class, be the leader down the hall to the gym, and bring in a show and tell.  Well, we had a terrible time trying to find a good show and tell for her.  She kept suggesting some cheap McDonald's toys, which I balked at.  I suggested things that were far to big or unruly (our dog), and finally suggested Simon.  The night before being kid of the day, she said, I think I want to bring Prince along.  Fine.  (Maybe the dog will die in his sleep?)  In the morning though, when she got up, she had changed her mind, and decided to bring along the somewhat more cooperative Simon.  It was a great morning for him.  We went in, he sat on my lap for the first while, and then got restless and decided to scoot everywhere and check out the toys.  The kids loved him, and had the usual four year old questions for Elizabeth.  "Do you like to play with him?  Does he play with your toys?"  Elizabeth gave them a bit of helpful information about how you have to be gentle with him because he has Down Syndrome.  The teacher helped out with giving them more information and they seemed to accept that as normal.  The kids really liked looking at his scar.  They thought that was pretty neat.  I only teared up a little bit once, when I thought about how these kids would be a couple of grades older than him, and would be possibly his buddies in the future.  How will they accept him?  Will they tease him?  Will the kids whose parents teased me tease Simon too?  I sure hope not, I sure hope that things have changed since the last generation, but who knows. 

When we went to the Christmas concert for the school, the grade one class, did the nativity.   It was quite sweet, and well laid out.  The angels reverently walked on stage with the sparkly halos.  The first four were very dark angels, with a few blondies in there for good measure.  The last angel has Down Syndrome.  She walked calmly to her place at the end of the line, and stood patiently waiting for the rest of the cast to arrive.  My cousin has this theory (and I tend to agree,) that people with Down Syndrome are a little bit closer to heaven than the rest of us.  They don't see the differences in people like we do.  They are somewhat more innocent.  While I realize this is making a broad generalization, in most cases it seems to be true.  So back to the angels....  The shepherds made their appearance, and went to the appropriate spots, and then the star appeared, and the wise men entered.  The angel at the end, the gifted one, pointed it out to them as they walked on.  Oh the innocence.  I started to tear up then.  Of course she is pointing the star out to them, she is closer to heaven and can see it better.  Then the music changed and they filed around the manger in the center of the stage ad began their exit.  The angels walked serenely past the manger in the proper order without a fuss.  Then the last angel walked up to the manger and stopped.  She stooped down to gently touch baby Jesus on the head.  I wouldn't have been surprised at all if she would have kissed him.  The tears started rolling down my cheeks.  The audience held their collective breath to see what would happen.  I just thought to myself, of course she stopped to say hi, she missed him.  Then, with a start, she realized that she was the only one left on stage.  People started to clap and cheer, she gave a quick little bow and ran off the stage.  It's a good thing everyone was cheering, or else people would have wondered why I was crying so much.  It was beautiful in it's symbolic way, and amazing to me, that these very people, who a generation ago, would have teased my cousin with Down Syndrome, were now applauding the beautiful angel.  Maybe there is hope for the world after all. 
video

Simon recently had the opportunity to teach some high school students about people with Down Syndrome.  We were invited to speak to a class about the challenges and daily life that Simon deals with.  We talked about his feeding tube, his therapists, his heart surgery, and general life information.  It was very neat to see them interacting with him, and to be able to read their comments afterward.  I gave them all printouts of the most recent blog postings, and they had to write a response to them.  I was very encouraged to see that some of them had no idea that people with Down Syndrome could be so smart that they could go to college.  I really hope that by the time Simon graduates, he will be interested in pursuing more schooling, and not just be joining the day program.  I really would like to institute some change in that area before he gets there, but that is a whole other can of worms.

So, I do have to put in two brag notes before I sign out.  One is that Simon is starting to take steps.  He is slowly working on this new skill, but we'll see how long it takes him to actually get up in the middle of the room and walk.  (I have a lot of videos and pictures of him doing some of the same things, because it takes him so long to master a skill, that I've already forgotten that he has done it already!)  He has done 6 steps now, but it is unfortunate that the times that he likes to walk the most is right before bed.  Too bad therapists don't come to our house at 7:30 or 8.  Oh well, I have video proof, it just isn't working to upload right now :(

And, the other brag note, is that he is starting to eat better in some respects.  We had a wonderful meal the other day, where I could just give him the food in the bowl, and he tried eating it.  And he was drinking from the sippy cup!  I know it seems like a small benchmark, but when you have been spoon feeding a boy for almost two years, it is huge progress.  We have had another meal since then that he has been able to enjoy like a big boy.  What a treat!  Hopefully very soon he will be cleared to drink cow's milk, and then we can feed him more options of regular food.  Oh the things we could try.....