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)



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.

Together.

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!

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.

Motherhood

Motherhood.

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!!

Moments

Living in a house with three children under the age of 5 can be ...  well ... busy!  Sometimes I love the craziness and other times I long for a calm moment.

This afternoon I found myself in the music room rocking Luke, who was asleep.  Gwen and Colin were playing downstairs, and as always, I had classical music on in the living room (we love classical MPR).  There was this moment.  A perfect moment.  Copland combined with the sleeping child resting on my chest and the gentle hum of children's voices on the floor below me.  I smiled to myself.  I sighed.  In that moment I was perfectly content.  Perfectly happy.

I'm sure you can guess what happened.

It lasted for about 10 minutes ...
then ...

Luke woke up.
Mahler came on the radio. (I like Mahler, but not as much as Copland!)
Fingers got caught in a door.

The calm was over, and the craziness was upon me again!

My mom showed me a cartoon today with the punch line, "the days are slow, but the years go fast."

I've been thinking about that a lot today.  I wonder how much my children will remember about the days I have spent reading, playing, singing, dancing, going on walks, cooking, and laughing with them.  Even if they don't remember every detail (which is probably just fine!), I hope that the days and moments that we share will help shape them into caring and compassionate adults.
   



 

Why rush?

I feel like most of my life I have been rushing to the next step:  High school, college, marriage, 1st job, children ...   Then we had Gwen and I couldn't wait until she crawled, talked, walked etc ...  The same was true with Colin.  I enjoyed the steps along the way, but I always anticipated the next step with excitement and eagerness. 

I felt like I could see the path for my life right up until the kids went to college and Matt and I were empty nesters.  Hmmm...  It's pretty easy to rush when you are moving in a straight line.

Is this the way we want to live? 

Luke has been such a blessing to us.  He has given us the gift of the unknown.  The uncharted.  The unexpected.

My family went to Canada once.  For about 6 hours.  We got lost trying to find some amazing fountain and ended up at the Japanese Gardens next to the police station.  It wasn't where we were going, but once we got there, we jumped out of the car and stayed for a while.  We joked that our family didn't drive to a particular destination.   Instead, we drove around and looked at stuff along the way.  :)

It's much harder to rush when you don't know where you are going.  With Luke, we are driving around bends and curves and enjoying the sights along the way.  We don't know where the final destination is going to be, but it's the journey that holds the excitement.  Why rush it?

Today, Luke turns 3 months and he still cuddles like a newborn.  He still fits into his 0-3 month clothes.  His neck is still floppy and his hands are just learning to grasp and hold.  But you know, I don't mind.  All things grow with love.  His smiles and laughter (yes - laughter!) show us that he doesn't mind being small or having to work extra hard to hold up his head.  He knows he is loved, and we never miss an opportunity to look into those eyes and tell him so.

Lots of people have started looking at Luke with questions in their eyes when I say he is 3 months old.  I know they are noticing how small he is and how he can't hold his head upright on his own yet.  Sometimes I tell them he has Down syndrome.  Other times I just smile and say what a sweet and wonderful baby he is, and leave it there.  They can make up their own minds about why Luke isn't at the destination they think he should be at.

For the first time, I don't have a picture of Luke to share.  He has been giving us amazing smiles, but I can't bring myself to rush for the camera.  I want those smiles all for myself!  Sorry for being selfish. I promise I will take some pictures of his precious smiles before my next post.  :)

On a side note:  This week Luke's hair has decided to lay down, and he has figured out how to blow raspberries.  For the past several mornings, I have been waking up to the sound of Luke blowing raspberries into my ear attempting to wake me up so he can eat.  When I finally open my eyes to realize it is morning, I am staring into the biggest, bluest, most amazing almond shaped eyes that have been waiting for me to wake up and notice them  :)  Ahh ... the journey.

Speaking of mornings -
Gwen woke up this morning and ran to my room with shouts of "It's Winter again?!"  She and Colin put their winter gear over their pajamas and played outside for 2 hours in 2 inches of snow!

What do you do on a snow day in April?

Child of God

Luke Michael, you are a Child of God.

"We are people created, chosen by God.  Then we're washed ever gently in mercy and love."

-from the Hymn "Baptized and Set Free" by Skogen-Soldner

Growing up, my mom always put the sign of the cross on my forehead before bed and recited the words from my baptism, "You are marked with the cross of Christ forever."  With those words, my sister and I were reminded daily of our baptisms.  We grew up with those words being as much a part of our day as the standard Lutheran table prayer "Come Lord Jesus." 

Besides playing school and store, we also played church on occasion.  Somewhere there are quite a few stuffed animals who are a bit "holier" than the rest, after being baptized with the garden hose one summer afternoon.  :)  Ahh - childhood memories! 

My sister and I have both continued the tradition with our own children at bedtime, and I love how it is a daily reminder of their place in God's family.

Luke Michael was baptized on Sunday, April 3rd in Strawberry Point at the same church I was baptized at 30 years ago (yikes!).  What a wonderful morning!  The choir sang "Borning Cry" and our family sang "The Lord is my Shepherd."   Luke was surrounded by family and friends, and he was an angel during the service.  By the time we took pictures, however, he was hungry and mad!  We chose Matt's brother Jared and his wife Leah to be Luke's sponsors, along with my sister, Karin.

My sister Karin has had a special bond with Luke since his birth.  I think he smiles at her more than anyone else, and whenever he sees Karin you can tell he recognizes her right away.  Luke is lucky to have such a special person in his life who will love him like a 2nd mother.

My sister-in-law Leah was one of the first people who voiced her complete confidence in our ability to raise Luke.  I will never forget her reaction when I said something about not being sure we could do it.  She just shook her head to dismiss my concerns and nonchalantly said something like, "You can do it.  You'll have so much fun with him."  Leah had worked with adults with disabilities for two summers and told us how much she enjoyed hanging out with the people who had Down syndrome.  She probably doesn't even remember that conversation, but it really affected me. Thank you Leah for your insight and encouragement.

My brother-in-law Jared is one of the most caring and nurturing people I know.  What a special godfather for Luke to have.  Jared always makes time for our kids and really listens and plays with them.  Luke will grow up loving his uncle Jared!

Luke's Family (missing GG Bill and Aunt Carrie)

After the baptism we went and relaxed with our family.  I picked up the camera and starting taking pictures when I saw Gwen and Colin playing outside.  Two bright spots against a bland backdrop of pre-spring colors.

There's something magical about Spring.  It is the perfect time of year for a baptism.  New life all around, sometimes visable, but mostly hidden.  Even the dullest day feels special in Spring!