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 23, 2010

In the beginning...

First of all I would like to make a personal disclaimer.  This blog is going to be a view into my head.  I know this will sound harsh to some, but if you do not want a different view of me, then stop reading now.  I am going on a journey into the new challenges in our life, and I am going to relate some not so complimentary thought of my own that may change the way you look at me.  This is going to be Sara in her head.  So be warned:  you may not like me after you read some of my thoughts.  Just so you know.

I am going to tell you a story about our lives just over a year ago, and we will go from there.  (I apologize in advance, I like commas and my grammar may be a bit unpolished.  But then again, in my head there are lots of commas and spelling mistakes.)

So just over a year ago, I was very uncomfortable.  I had a swollen abdomen, swollen ankles and was not sleeping well.  I was pregnant.  This was my fourth pregnancy, and I was glad to have it almost over with.  With our first child, I was two weeks overdue, and I was not relishing the thought of this baby going past it's best before date.  Therefore we tried almost everything to get this baby to come out on time.  Then on Wednesday I started to have contractions.  (If you don't like graphic labour details we will see you later.)  I thought, "Yes!  The end is in sight."  And to be honest it was.  Every woman who has been pregnant knows that you can't be pregnant forever.  And it's true. 

I had irregular contractions all day Wendnesday.  I called our midwife.  I had irregular contractions all day Thursday.  I called our midwife. I had irregualr contractions all day Friday.  We dropped off our daughter at our friends place for night.  We had friends over.  I called our midwife.  I cried.  She told me for the third night in a row to go to bed and get some sleep.  No pregnant woman who has been having contractions for three days wants to hear that. 

Saturday morning things were getting promising.  Upon checking me, our midwife told me that I was in fact dilating.  So after those frustrating days, we were finally going to have a baby.  Today!  Cara (our midwife) kept telling me that the baby wasn't in a good position.  She always sounded slightly concerned, which for our midwife said a lot.  I was always on the alert for things to be different than when we had Elizabeth.  Maybe in the back of my mind I knew we were supposed to be prepared for something.  Little did I know...

I scrubbed the floor on my hands and knees with my Norwex cloth to get that baby to turn.  I crawled around our house, and rocked on my hands and knees with my exercise ball, and waited. 

By supper time things were finally starting to happen.  I was four centimeters dilated and we would be allowed to be checked into the hospital as I was considered in active labour.  I was looking forward to the labour tub.  The jets, the warm water, the music, low lights, and ice water.  What more could a woman want when preparing to deliver a baby. 

We dropped off some clothes for Elizabeth at Deron and Naomi's house where she was staying.  Then Andrew drove over as many bumps as he could on the way to the hospital.  At least that is what it felt like at the time. 

We met our midwife at the hospital and got settled into the room.  It was 7 pm.  We got the luxury suite at the end of the hall.  What a blessing for all of the events that would transpire. 

I practically skipped down the hall to the labour tub.  I say practically because honestly how mobile do you think a person is when they are in active labour.  Anyway, I was eager to get the work over with and get this baby back home.  See, the thing about having a midwife, is that they follow-up in your home which means that you get discharged a lot faster.  Therefore my thought was that we might be home that night already with our beautiful baby. 

I relaxed in the tub for two hours until Cara declared that I was 10 centimeters and ready to push.  I climbed out of the tub and pushed.  (I didn't mean to, really!)  I walked down the hall and got the door of our room and pushed.  Again, I couldn't have stopped it if I wanted to.  I climbed onto the bed and pushed again.  With a snap and gush my water broke.  Cara turned around to grab the fetal doppler thing, and when she turned back around to check the baby's heart rate she had time to say, "Whoa Sara slow down!"  And then she caught the baby as he came rushing out.  Then she put the gloves on.  Oops.

The rest is a bit of a blur for a number of reasons.  There are many memories that kind of blur together from lack of sleep, worry and stress.  Simon was "dusky" when he came out, and kind of floppy.  Cara kept telling us that sometimes that happens when they come out so fast.  They are kind of stunned.  She told us he had the shortest cord she had seen in a long time.  Way to go Simon!  Does that mean he will be a short stop?

He was a beautiful baby weighing in at 8 lbs, 8 oz.  He was 21 inches long, and was born at 9:10pm.m

Cara went to the intercom to call for some help because of Simon's color.  The neonatologist came in along with a bunch of nurses.  They cleaned him up, suctioned his airway and started to examine him.  The neonatologist and Cara started talking in hushed tones about some things that they were seeing.  Andrew through it all had been taking pictures of Simon and trying to get close to him.    I heard the neonatologist mention the words Trisomy 21 and my hear just sank.  My first thought was, "He didn't look like that!  He can't die.  That wasn't how he looked!"

I can't remember exactly how much earlier the groundwork for Simon was laid, but here is why I was thinking those thoughts.  In our church in Winnipeg there was a couple whose grandson was born with Trisomy 19(?).  It is a fatal genetic abnormality in which the baby is not expected to live.  Their grandson lived for a blessed four(?) months before he passed away.  We met him at church once and he was absolutely adorable.  He was markedly different, with hands that were hard to open, and ears that were a different shape.  He looked in my opinion like a little old man.  A tax collector perhaps. 

When I heard the words Trisomy 21 I thought that is what they were talking about.  This was a huge blessing for me.  To go from thinking Simon was going to die, to find out from this doctor that it was Down Syndrome was a huge relief.  I could deal with a disability.  I couldn't live with a baby that was going to die.  I first went to the very bottom of the pit, and then was given a lifeline.  Simon "only" had Down Syndrome, he wasn't going to die.  (He will at some point, but his life expectancy is fairyly normal.)

After we were told the news I was allowed to hold him and bond with him.  I tried nursing him and he seemed to do all right.  We rested and watched him sleep.  This time it was different though.  When Elizabeth was born there was pure thrill that we were parents to this little bundle.  When we watched Simon there was sorrow mixed in with the joy.  There was uncertainty.  A new road that we were going to travel.  I must admit that there was also some pride.  I thought selfishly at some point that this was a road that we weren't going to be told how to travel.  Most of our friends have kids already.  At that point we had no friends who were parents of a child with a disabilty.  We were pioneers in this way.  I thought about how we could defend ourselves.  "Well your child doesn't have a disability does he?!"  Now looking back I realize how completely shallow that was.  Oh the things that we think in order to cope with the current crisis in our lives.

We ordered pizza around ten, because after I do a lot of work (like having a baby) I get really hungry.
Simon hung out in our room for a couple of hours until Cara left. When she left the hospital she left a report with the nurses about how he had been.  They were not comfortable with his history and opted to take him to the NICU for observation overnight. 

That is where I will leave you for now.  Baby born, Mom tired, story paused for now.  Until later...