The attitude....

I have always been terrible at introductory and closing paragraphs.  I beg your forgiveness for my butchering of perhaps both.  

After Simon was discharged from the hospital and we went home, I had to prepare myself for a whole different entrance to the world.  With a healthy baby, you are prepared for the smiles of people as they admire the new precious bundle.  When you take home a baby with a tube subtly taped to his cheek you are preparing for an entirely different set of smiles.  There are the smiles that say, "Oh what a cute baby.  I wonder what is wrong with him?"  The smiles that don't quite meet peoples eyes.  The people that don't meet your eyes after they catch a glimpse of the tube.  It was hard to be defined by a baby with a feeding tube. 

At the beginning I kept repeating to the nurses that unless you knew he had D.S. Simon didn't look like he had it.  It was partially a survival thing for me and partially and aesthetic thing.  I didn't want to be ashamed of Simon because of how he looked.  I wanted to be proud of my baby boy for overcoming the obstacles of eating and other people's stigmas.  At the beginning I wasn't ashamed of him for how he looked.  He didn't look different from the other babies in the NICU because he hadn't grown into his features.  I desperately clung to the fact that people couldn't tell.  I wasn't ashamed, just not ready to answer a million questions, or hear another million stories.

My attitude after we came home changed somewhat.  The new survival was to just get through.  Our first public outing was to a restaurant with Andrew's sister and brother-in-law, his cousins from Winnipeg and Saskatoon, and five lively little girls under the age of seven.  We went to the Old Spaghetti factory.  We were kind of tucked away from other people because we were such a large group.  At that time Simon had such a small amount to eat, that we only had to use a 30 ml syringe to feed him.  It was inconspicuous.  He was so little I didn't have to hold it very high to get it to drain properly, and he was asleep which helped a lot.  The feeding went off without a hitch.  No vomit, no tube being pulled out.  What a relief.  If people were glancing at our table they were distracted by the beautiful little girls.  It was a good wade in to public life. 

Just a side note:  It is such a blessing now, to be able to pack in the diaper bag a diaper or two, wipes, and a spare set of clothes.  No stethescope, no spare tubes and tape, lubricant, formula and milk, no booklet with emergency numbers just in case. 

Back to the attitude.  As time went on, we went out a little more.  Our second stop was at church on Sunday morning.  I told myself not to cry.  Over and over again I repeated it.  It didn't help.  When Vanessa announced from the stage that we were there for the first time that morning, I cried.  I stood there with Simon in my arms and my chin quivering like crazy.  I didn't look up because I knew I would lose it.  I cried because we were finally there.  I cried because I didn't want to cry.  I didn't want people to think that I was sad that Simon had D.S.  I wanted to be able to make a little speech to thank people and tell them how proud we were of our beautiful baby boy.  I wanted to tell them that I was sad because things were so different than I had expected them to be with a new baby.  I cried for the loss of what we had expected, not for what we were given. 

Andrew and I had a brief talk the other day about grief.  We talked about how we had felt at the beginning, because back then we didn't have time.  I ate, slept, fed and pumped.  That was all I had energy for.  In our talk about grief Andrew couldn't understand why I still felt grief now.  Simon is healthy, the major obstacles are over.  At least in Andrew's opinion.  Maybe I am a pessimist.  I am overjoyed that we only have to go back to the cardiologist once a year.  I am overjoyed that the tube will hopefully never have to go back up his nose.  I am overjoyed that he is doing so well in many things.  But in the back of my mind there is always the little thought that he may live with us for the rest of our lives.  Not a guarantee, but a possibility. There is the thought that kids may give him a really hard time in school.  Again only a possibility.  Will he be able to go to our camp?  Again a possibility.  With Elizabeth there are a lot more guarantees.  I hope she will get married.  She will move out (or we will kick her out eventually).  She will probably go to university or college and get a job.  She will get a driver's license and probably buy a car.  That is what is expected of people in life.  With Simon it is different.  Sure we will teach him to drive a car.  But he probably won't get a license.  There is a grief there.  Not a shame, just a loss of the things that are expected of people in life. 

Again I digress.  Back to the attitude.  After the church announcement our pastor came to us and prayed with us and the congregation.  He has a nephew with D.S. so he knew more than most people about what we were going through.  We really appreciated that.  To know that we weren't alone.  I hooked up with Sean's sister on the phone and had what was probably a very awkward conversation as I asked what now seem like ridiculous questions.  They were important to me at the time, but now I realize how dumb they were.  Thanks for being understanding Heidi.  Good grief Sara did you really ask if her son's tongue stuck out? 

Back again to the attitude.  (I will get to my point eventually.)  After church people came up to us to see Simon and talk to us.  People saw the tube, and ignored the tube.  Some bold people even asked politely about the tube. "Is that to help him breathe?"  See the thing about being polite, is that you try so hard not to step on toes, that you actually trip over your own feet in the process.  I had some very sarcastic responses in my head when people asked about the breathing tube, but to my credit I kept them in my head.  Be kind Sara they are learning.  The best question for me was from someone a little older than myself.  He walked up to us, took a look at Simon and said, "What's with the tube in his nose?"  Thank you!!!  He asked the question that people were thinking, and I was waiting to answer.  "It goes into his stomach to help him eat."  That simple!  What a relief to have that out in the open.  Why can't we all be like that.  Oh wait, because we aren't all in that frame of mind to hear such questions all the time.  Oh in the ideal world we would be.

To the point this time.  My friend Kristina and I took Simon with us when we went to a box store to pick up a few things that we needed.  We took Elizabeth with us, and Andrew stayed home.  Then my attitude as we walked into the store was one of daring.   I dared people to ask about the tube.  I dared people to stare  I dared people to notice that something was different about Simon.  No one did.  They commented on his car seat cover, (it is really cute) and they commented on Elizabeth, (she is really cute) or they didn't comment at all.  I was arrogant and nobody gave me the satisfaction of being the one to say something about my "intellectually challenged" son.  I was a little disappointed.  I had all kinds of answers ready for the first person to jump in.  No one jumped.  It gave me a little bit of grace for the human race.  Maybe we aren't all as stupid as I like to sometimes think.  The arrogance has faded over that past thirteen months and 26 days.  I have stopped challenging people with my body language.  I have become more confident with my son in public.  There is always a little bit of disappointment when we meet someone who is close to the same age as Simon and they are waving and walking and talking.  There will always be disappointment.  That is life.  I will always have expectations that won't be met.  I can't even meet my own expectations of myself , never mind my expectations of others. 

I think it is time to go and hug my son.  I hear him in the other room with his Daddy.  He is using vowel sounds and giving his warrior cry as he gets helped to his feet.  He loves to walk with someone to help him.  He loves people, and they love him.  How can you not love the big goofy grin that breaks over his face when he sees his Mommy.  There will always be attitude, there will always be disappointment, but as long as love is greater than those, life continues. 

Sara's survival guide

So here we were on this crazy ten ticket ride, and I knew very early on, that we would have to find an organized way to survive this ride or else we would get lost in everything.   I decided that it would be a very smart idea to get a day planner for Simon. With all of his specialists we needed a central place to keep phone numbers and other important information. 

If you know anyone who has recently had a baby with a disability of any sort, here are my suggestions for them:

1.Get a day planner or central notebook.  Something with lots of places to make notes when the doctors are speaking medically.  Have enough space in there for pens and a calculator.  (You never know when a calculator will come in handy.)  Have a different color pen for keeping track of developmental milestones.  It is nice to look back at the day planner and be able to realize that even though it took a little longer, my baby did eventually roll over.  This was how old he was when he did it. 

2.  Set up or have someone set up a food brigade.  With all the new words that you are going to have to learn, all of the appointment that you are going to have to keep, you do not want to be worrying about what will be for supper in a few days. 

3.  Have a central information person.  If your baby is still in the hospital and you are running back and forth, you probably won't have time to be returning phone calls from Great Aunt Dorothy who wants to know how the baby is doing. With social networking it is easier to have only one place to update people, but it is always nice to speak voice to voice.

4.  Be prepared for the stories.  We had so many people who told us stories about their second cousin twice removed who had a baby with Down Syndrome and had to have a hernia operation, or a lung removed, or whatever.  People will spend a lot of time trying to process for themselves how to deal with your new bundle.  Sometimes you just have to smile and nod.  If you are a friend of someone who has the new baby, try not to tell stories about your cousin who had the baby.  After a while it gets to be a bit much.  Save it for next year when it matters more. 

5.  Do your research.  Get a hold of reliable material that can help you interpret what doctors are saying and what challenges need immediate attention and which ones can be addressed in the months or years ahead. 

6. Find a friend.  There are connections to be made at the hospital where you can speak with someone who has been through something similar.  Find someone who has been there and can answer your questions, or just listen.  It is invaluable to have a person you can call to find out about the challenges that lie ahead.  If you can, go through a friend that you know personally.  Then they can vouch for their personality and character and the probability that it will match with yours.

7.  Take time to cry.  It does really stink at times to have this hand dealt to you.  Holding in the disappointment only delays the process you will have to go through eventually.  You expected to have a perfectly healthy baby and when you don't it is okay to grieve.  Just don't let yourself drown in sadness.  You also have a baby!  For some people that is not a reality that they can achieve. 

I don't have much time today, so until next time,
here we come ten ticket ride.   Going up!

And now for the rest of the story...

Just a quick recap from last time - Simon took a long time to be born, but when he did he came fast, we found out he had Down Syndrome and that was a huge shock, and we had pizza and I was tired.

So there we were we were supposed to be at home enjoying our wonderful baby in the peace and quiet of our condo.  The biggest decision I was supposed to be making was when to bring Elizabeth back home.  And instead we were in the hospital sleeping in a very uncomfortable bed and an even more uncomfortable chair bed.  Simon was in the NICU and was going to be there from a couple of days to a couple of weeks.  This did not impress me at all.  I like to know things and not be given an approximate time frame.  I had waited nine months for this baby to come home with us and now we were told we were going to have to wait even longer. 

We were met the next day by a couple of hospital staff.  The hospital pediatrician stopped by to talk with both Andrew and I, but Andrew wasn't there at that time so I was thrown into the primary caregiver job.  (That's what a mom is anyway, but this was different.)  I took notes and heard a few dreaded words.  "Kids with Down Syndrome are notoriously poor eaters."  I wanted to cry.  Our daughter had given me a lot of grief when she was a baby because she had candida problems.  I told myself when I was pregnant with Simon that as long as he was a good eater I would be okay if he was a terrible sleeper.  I guess I am (was) supposed to learn something in all this.  PATIENCE!  Oh bother.

The next hospital person that came to see both of us was the hospital social worker.  She was a dear.  Very straightforward and very kind.  She told us two things that I remember vividly.  She said, "You won't do Simon any good if you are here burning yourself out.  You need to rest and you need to spend time with your daughter.  If I see you here too often I will send you home."  We appreciated that, and she did hold us to that.  The second thing that she told us is so very true of our lives since Simon was born.  She told us, "You know when you go to the Ex (The Red River Exhibition for you non-Manitobans)  you can tell how scary a ride is going to be by how many tickets it takes to ride it.  The ferris wheel is only two, where as the drop of doom or the zipper is six or eight.  You are going on a ten ticket ride.  Things will come up and you will be reminded that this is a ten ticket ride."  That rang true for me on many occasions.  That was exactly how we felt when the doctors told us he had a hole in is heart and would need open heart surgery within the first year of life.  A ten ticket ride.  No one asked me if I wanted to go on the ride.  No one warned me what was coming up.  We were riding this roller coaster blindfolded and no one else had been on this ride before to tell us how great or terrible it was.  The triple loop?  Surprise!  The drop of doom?  Surprise!  I wanted to get off this crazy roller coaster and go back to the ferris wheel. 

 Through all of this craziness that we all of a sudden had to adjust to, I was waking up every three hours at night to pump.  This was very important to me.  Simon was still in the hospital and I was at home.  If he was going to have all of these huge challenges in life, I was going to give him the best thing for him the give him antibodies and immunity and everything else that God designed mother's milk to be.  That was my thing that I could do for him. 

The next few weeks were a blur of sleeping, eating, pumping, going to and from the hospital, phoning people to look after Elizabeth and arranging rides for the next day.  Andrew was exhausted and so was Elizabeth.  I am still amazed that she handled everything so well.  She went from spending every day with me, to going to a different house everyday, sometimes with people she hardly knew.  It was a huge blessing that she rolled with the punches.  We all rolled, and we all waited for Simon to come home. 

In some respects waiting was almost as hard as all of the feeding challenges for me.  Every day we would go to the hospital and wait to hear what the doctors would say in rounds.  I would try my hardest to get Simon to nurse or bottle feed the appropriate amount.  We didn't get a lot of sleep.  Andrew would help out by being available to sterilize the pump parts so that I could go to bed those twenty minutes earlier. 

As the days turned into weeks my frustration mounted.  When would he be coming home?  This past week I was hit on Tuesday by what had happened a year ago on that day.  After watching other babies come and go in the NICU we were waiting for our time to come.  On my birthday one the of the neonatologists asked, "What if Simon could handle an indwelling tube?"  My hopes were up like a dog's ears when you ask if he wants to go for a walk.  Home?  Did she say home?  Tube?  Whatever.  Home? 

Previously they had tried to do an indwelling tube on a night shift and Simon had apparently not tolerated it at all.  I couldn't blame him.  Who wants a tube stuck up their nose?  I was angry too.  I thought that would make it easier for the nurses to save time and just tube feed him instead of bothering to try bottle feeding.  That would mean it would take him even longer to learn how to eat properly.  But now!  Now an indwelling tube meant home.  We could do that.  No problem. 

We talked about what that would mean for us.  I would have to learn to put the tube in myself in case it came out in the middle of the night.  Okay, Home?  I think that if Simon hadn't been in the hospital for that long I would have balked at the idea of threading a tube up his nostril down his throat into his stomach.  As it was it meant he could come home.  All I had to do was successfully put the tube in three times and my part would be done.  All Simon had to do was pass the car seat test which meant sit in his car seat and not have his sats (blood oxygen levels) dip below a certain point.  Not a problem.  He did the car seat test with flying colors, and also gave me an extra chance to put the tube in.  He managed to pull the tube out while he was doing the car seat test.  Sneaky boy. 

Finally I had done it four times!  The first time my hands were clammy, I was sweating and babbling to the nurses around me.  I was so nervous, but it only took two tries and it was in.  It was easier than I thought and  with a few tips from the nurses it was easy enough for me to do on my own.  I did still have to have someone position his head for me, but at the end I found I could hold him on my own too. 

That was it!  I spent the night in the isolation room in the NICU and then the next day we were sent home.  Ten ticket ride here we come.

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...
Sara