Thursday, April 28, 2011


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.

Saturday, April 16, 2011

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?

Thursday, April 14, 2011

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!

Thursday, April 7, 2011

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.