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)

Sunday, May 22, 2011

The Swing

 I'm not sure if it's for the kids or for me ... but the swing is up!  These pictures make it look like we put it up for the kids, but I'm pretty sure I  have clocked as much time (or more) than Colin or Gwen.


Two on a swing, and one on a blanket.  It won't be long before we will be figuring out how to get all three of them on the swing together!

Secrets between a brother and sister ...  I'll never know what they were talking about, but it's these moments that bond them as brother and sister.  When I watch the two of them together I know that Luke is going to be taken care of.  They are going to be his team.  I just know it.  
"Team Luke."

Oh, to be a child again and experience this...
Swing, swing swing swing.
I sit on my throne, and I feel like a King.
Swing, swing, swing, swing.
Goodbye to the earth, I'm a bird on the wing!

Tuesday, May 17, 2011

More than me

As a mother, I tend to every need of my children.  I wake in the night to feed a baby, I read books to my children as if my life depends on it, I kiss multiple skinned knees, and accept every bouquet of dandelions as if they were the most beautiful flowers I have ever seen. 

And yet ... it's not enough.

Despite my best efforts, I have come to realize that my children need more than just me. 

I can't do it all. 

They need their Daddy to wrestle with them, cuddle with them, build them a swing and sing them songs from the radio.  They need their grandparents to parent them with the experience of a lifetime.  They need their aunts and uncles to show them new perspectives in the world.  They need a community that cares for their growth and development and offers experiences I can't.  They need time away from adults to learn how to work together and how to let their imaginations soar.

Daddy getting the ropes ready for a swing.

Whenever I hear my sister sing Luke a song, listen to Gwen tell me what she learned at Kinderhaus, or hear my Dad read Colin a book, I feel a weight lift off my chest.  Other people are helping my children to grow and learn. 

I don't have to do it all.

After Luke's birth I felt alone in the first few days, and even weeks.  I wondered how I was going to find time to raise Luke.  I was afraid his needs would keep me from spending time with my other children.  I figured I would be solely responsible for teaching him everything he would need to know.  Then, if something was missed, it would be my fault.  I underestimated the people who surround Luke and our family.  I'm not the only one who loves Luke, and he needs those other people in his life.

Luke is growing (14 lbs 13 oz at 4 months!), which Luke and I have achieved together.  He is also getting stronger and learning new things.  Yes, I work with him every day, but so do many other people.  Even Gwen has learned how to help Luke when he's on his tummy and knows what physical therapy skills we are working on.  Does she know that every baby doesn't have to work so hard?  I'm not sure.  What she does know is that Luke is our "special buddy angel." 

Her words, not mine.

Luke Michael, 4 months old

I don't know how to thank all the people who have taken the time to read, sing, do a puzzle, bake some cookies, draw a picture, or just have a conversation with one of my children. 

I can only say thank you.  Thank you.  Thank you.

Sunday, May 8, 2011


How much I wanted it. 
How little I knew.
How much I have learned.
How wonderful it has been.
How I look forward to the future!

I am blessed to have an amazing mother who took time away from her career to be home with my sister and me when we were young.  She is the reason I knew I wanted to spend my days at home, nurturing and teaching my own children. 

So much has changed since my first Mother's Day in 2007.  My journey of motherhood has had it's ups and downs, but today, as I look back at these pictures (all taken on Mother's Day), I see how much that journey has shaped my life.  Today we thank our mothers, but I also want to thank my children.  How wonderful to experience childhood twice in one lifetime!

2007 - Gwenyth is 11 months old and I was finishing my final year of teaching before staying home with her.

2008 - Gwen is now almost 2 and I am pregnant with baby #2, who was due on January 16, 2009.  We would lose this baby 3 weeks later. (Anyone notice the due date ended up being Luke's birthday?!)  I didn't even realize it myself until I looked at this picture.

2009 - Gwen is now almost 3 and Colin is 6 weeks old.

2010 - Gwen is almost 4 and Colin just turned 1.  Matt was on call that morning, but I was determined to take the kids to church on my own.  (What was I thinking?!) 
I can't remember if we made it through the service ... 

2011 - Today I am the mother of 3 beautiful children. 
Of all the adventures in my life, motherhood trumps them all.

I also want to open the discussion of Down syndrome up to all of you.  The two most common questions I have been hearing from readers that I will be addressing in upcoming posts are:
#1 - Luke doesn't look like he has Down syndrome.  Are you sure he has it?
#2 - What are the "superman" pants for?

If there are other questions you have - please email me or post a comment.

Happy Mother's Day!!