Tuesday, May 31, 2011

This is Luke ...

Soon after the doctor told us that Luke had Down syndrome, I realized we had to tell our friends and family.  I honestly can't remember who we called first or what most people said.  The only response I remember is my Dad's.   He let out a sigh of relief and said "I thought you were going to tell me something serious."  He had worked for years as an elementary guidance counselor and knew that Down syndrome was not the tragedy I was imaging in those first few hours.  Thank goodness for parents who keep us grounded!

When we started taking Luke out and telling people he had Down syndrome, we became aware that many people couldn't "see" the features on him.  Because of that, I found it challenging to tell people the diagnosis in the first month or so.  I didn't want to say "This is Luke.  He has Down syndrome."  Neither did I want to avoid the topic, since many of the people he was meeting were friends, who would eventually find out. 

I experimented with different ways of telling people.  Eventually I settled on introducing Luke and first telling what a wonderful baby he was (easy to do, since it was so true!)  Then I would say, "We did find out that he has Down syndrome, but he is healthy and doing really well.  He is so much like our other children."  That seemed to satisfy most everyone.  It didn't beg for the "I'm sorry," that I got before I figured out how to tell the news with an upbeat voice.  It also didn't conjure up the blank stares, that I got when I told the news without elaborating on how we were feeling about the diagnosis.  I found that people took their cues from me.  If I was sad, so were they.  If I showed acceptance and love, they followed suit.

We know Luke has Down syndrome because of a blood test.  We know he has 3 copies of the 21st chromosome because we have seen Luke's karyotype.  Beyond that, Luke also has many of the common physical features associated with Down syndrome. There is a stereotype that all people with DS look alike, when in reality Luke will look more like Gwen and Colin than he will look like other people with DS.

One of the things Matt noticed right after Luke's birth was his low muscle tone.  This is called hypotonia and makes his body more flexible ... or cuddly.  It just depends on your perspective.  None of our children have cuddled quite like Little Luke!

Luke's eyes have the classic almond shape, and the bridge of his nose is slightly flatter than our other children's. When Luke is happy he smiles with his entire body!  And those eyes ... I don't want to say his smiles are more precious than our other children's, but his eyes do seem to sparkle in a different way.  Just thinking about it makes me smile!

Some of the other features are very subtle:  A space between his big toe and the other four, pinky fingers that are curved slightly inward, small and rounded ears, a bit of extra skin at the nape of his neck, and brushfield spots in his eyes. 

It feels funny to list all these things, because they don't tell you anything about Luke.  It's just a list.  A list of things that the extra chromosome 21 does to the body.

Let me tell you a little about Luke at 4 months.  He is still rolling from his tummy to his back, something he started doing at 2 weeks and has never forgotten.  He likes to suck his thumb, which makes all of his sleeves wet since his clothes are all too long in the arms for him.  He loves to play under his play gym (especially after Gwen added hanging finger cymbals), swing in his swing and play with toys on the floor.  He also LOVES playing with Gwen and Colin, reading books and believe it or not - singing with us!  He still blows raspberries and is a great "talker."  He even started scooting forward and pivoting last week!

We find ourselves celebrating with Luke every day.  All the little things - putting his hands together, holding his head up, grabbing his feet ...  they are all mini milestones that we didn't even notice with our other children.  The delays will come, it's just part of his syndrome, but it just gives us more time to appreciate and celebrate the smaller steps along the way.

We call this group "Luke's Gang"  Ages: 5,4,3,2 and Luke (along with my sister Karin)

1 comment:

  1. Look at my eyes and Gabe's eyes. Crazy! The kids and I are having fun looking through all the pictures on past posts. Love your blog, sister dearest.


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