Luke's Birth Story Part II: Our New Journey

This post comes directly after “Luke’s Birth Story.”  I considered not posting this part of the story, partially because it is so personal, and partially because we have moved beyond this phase.   However, I decided it was an important part of our journey and needed to be told.

It was 2:30 am when we got to our room to sleep.  I was wide awake and just wanted to hold Luke.  His temperature was low, so they asked me to hold him skin to skin for an hour.  No problem!  I was happy to cuddle my new baby.  An hour turned into 2 and then 3.  Before I knew it morning had come, and I hadn’t slept a wink.  But who cared!  Matt, Karin and I couldn’t stop talking about how well the birth had gone, and of course we couldn’t stop looking at Luke.  His cute little features and sweet face.  

The doctor who had delivered Luke the night before came in that morning to check on us.  I was exhausted, but it was wonderful to see her and thank her for supporting my VBAC.  Next in was the pediatrician.  What a sweet and caring man he was.  He checked Luke over while Matt, Karin and I talked and laughed.  He came over to give the report.  He told us Luke looked great.  “Very healthy” he said.  He continued by giving us a long list of positive things.  Then he paused before continuing.  He said there was only one thing that concerned him.  He thought he was seeing some physical signs that may indicate Down syndrome. 

That is a moment that will forever be frozen in my memory.

I looked at my sister and then at Matt.   I just stared at them trying to make sense of what the doctor had said, hoping maybe they hadn’t heard the same words I had.  The room was silent.  My sister was surprised, but Matt wasn’t.  His face showed recognition.  He knew.  In that pause I head Matt say, "That was the one thing I was worried about."  Had he known all along?  Did everyone know except for me?  I think the doctor said something about needing a blood test to confirm the diagnoses, but it didn’t matter.  I knew it was true.  Those eyes.  Those ears.  I had noticed it at his birth, but hadn't let the idea go any deeper than a fleeting thought.  I held myself together until the doctor walked out of the room, and then I burst into tears.

I was in a panic.  I hadn’t slept for 3 days and now this.  My perfect birth now seemed so distant.  I couldn’t even look at Luke at first.  It was the loss of the child I thought I had given birth to.  The guilt was overwhelming.  What a terrible mother I was to not want to hold her child.  It is so painful to write this, and yet I think it is important to share the very raw feelings that were present in a moment like that.  I wish I had known those feelings were normal.  Instead I cried not only for the diagnosis, but also for the guilt I felt because of my reaction.

My mind raced with thoughts.  This isn't supposed to be my life.  No one asked me if I wanted to raise a child with a disability. (Of course, no one asked Luke if he wanted a disability either).  I wondered why we had even wanted a 3rd child.  I wanted to go back in time and conceive during a different month.  I wanted to go to sleep and find out this was all just a dream.  I felt trapped.  I know I said several times, "I don't know if I'm up for this."  How could I possibly raise a child with Down syndrome?  I don’t even know anything about Down syndrome?  Don’t people with DS only live to age 35? (In 1980 the life expectancy was 25-35, today it is 55-65) 

It didn’t take long before I looked at that sleeping child and saw that he was still the same baby I had held only moments earlier.  He hadn’t changed.  He needed my love.  So innocent.  This wasn’t his fault.  He needed his mother to hold him, and I did, still crying.  In that moment I realized I needed him just as much as he needed me.

The pediatric genetics specialist came in soon after and examined Luke.  She told us that she had seen hundreds of babies over the years and that with no uncertainty, Luke had Down syndrome.  She showed us multiple physical features that were indicative of Down syndrome.  She said it with love and empathy.  She also talked to us about Luke. Some of the phrases I remember her saying are,  “He is a baby first.  He will live a long life.  He will have friends.  He will take pride in his work.  He will be a valuable member in the community.  He will write his own story.”  (My inspiration for this blog).  She made it sound possible.  Possible to raise Luke.  Maybe we could handle this...
                                                                                                                                  
After she left, Matt and I had some time alone.  During that time we held Luke between us and prayed for him.  Prayed that we would be the parents that he needed.  Prayed for his health.  Prayed that his sister and brother would love him.  Prayed that society would accept him.  We prayed for his happiness.  We held him and prayed for a long time.  It was the turning point for both of us.  We were able to grieve the loss of the son we were expecting and welcome the one we were given.  

That evening my mother-in-law came with our daughter, Gwenyth.  Gwenyth had picked out a red rose for Luke in the gift shop and was SO excited to give it to him.  (She still talks about how she picked out the "prettiest flower in the whole store" for Luke.)

When it came time to choose my bead to add to the birthing beads, I chose a red flower that will forever remind me of Gwen and Luke meeting for the first time.  What a beautiful moment.  Watching our little girl come in and love Luke unconditionally.  She was so proud to be a big sister again and so loving to Luke.  Matt and I look terrible in the pictures we took that evening with Gwenyth and Luke, but it tells a story.  We were still grieving and Gwenyth was simply loving. 

 

The next morning, before we headed home, the doctor that had delivered Luke came to check on us again.  She smiled and told us congratulations and shared her experience with Down syndrome.  Her son’s best friend since kindergarten has Down syndrome, and he is 17 years old now.  She told us how they go bowling together and how her son’s friend reads, drives and will be graduating from High School soon.  What an inspiring story to go home thinking about.




Luke coming home from the hospital

 

Since that morning we have been blessed to hear stories from so many people about their experiences with people who have Down syndrome.  I hold those stories in my heart and think about them when I watch Luke and wonder what his future holds.  How many people will he inspire?  How many people will share his story?  How many people will learn how to love from Luke?  Everyone tells us how lucky Luke is to have us.  I would love to think that is true,  but in reality ...

We are the lucky ones.