3.21

3.21

(3 copies of the 21st chromosome)

World Down Syndrome Day

I just deleted everything I have been writing, because I don't know how to express what I'm thinking right now.  Luke is lucky.  He was born in a place where he receives Physical Therapy, Occupational Therapy, and Speech Therapy.  Luke will receive Medicaid to help him with medical costs throughout his life.  He will get housing assistance, food assistance, and be eligible for job programs as he grows up.  Luke is also surrounded by people that love him and want him to be successful.

I wish I could say these things for all children around the world who have Down syndrome, or any disability, but I can't.  It's sad and depressing to know that there are many children put in institutions and hidden away before they are Luke's age.  Luke is thriving.  But I can't imagine he would be doing this well if he didn't have so many people working with him and encouraging him.  No child will ever reach their full potential without love, support and resources.



Luke at Physical Therapy

I know that there are people from Canada, South Korea, Australia, Russia, Germany, United Kingdom, India and Brazil (among many others) who read this blog.  I don't know who you are, and I don't know if you have a story to tell - but if you do, please consider writing to me or commenting on this post.  I would love to learn more about Down syndrome around the world from you, and not just from the internet.



Every month Luke goes to music therapy with some of his friends.  I decided to add these photos after reading a few profiles on Reece's Rainbow page where music was mentioned.  As a music educator myself, I love the reminder that music is something children all over the world love and are inspired by.








Happy World Down Syndrome Day!



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!

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.

A New Friend

Hooray for Spring! 

The past two days I have ventured out to parks with the kids for an afternoon break.  What a surprise to meet a beautiful young girl with Down syndrome (6 years old) playing at the exact same parks both days.  Yesterday, Gwen (almost 5) was playing off on her own and didn't get a chance to meet or play with the little girl, but today she did.  What a lovely and pure friendship to witness.  No questions, just two girls playing in the park.  Watching those girls running around, going down the slides (over and over!), blowing bubbles and swinging side by side, you would have thought they had been friends for years.  I was struck by how freely our children give their love and friendship to others.  I could see Luke in 6 years playing on the playground with a new friend and that was refreshing.  For whatever reason I have been struggling this week, and Gwen helped me to see beyond my own fears.

The best part for Gwen? A new friend. 
The best part for me?  Seeing acceptance.

Gwen - Thank you for being Luke's hero (and mine) without even knowing it. 

Bring on the Tulips!

While I continue to work on my post about the day after Luke was born, I thought I would share a poem several of you may already be familiar with.

We came home from the hospital with a bag full of information about Down syndrome.  I looked at that bag on my dresser every day and even peeked inside a few times before finally opening it after a week or so.  This poem was the first thing I read.  It is actually quite fitting.  I have always thought Holland would be a fun place to travel to.   I own a pair of wooden shoes (thanks Mom!) and think windmills are pretty great!   Who says Holland can't be flashy?



I say - bring on the tulips!


      Welcome to Holland

By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Luke's Birth Story Part I

On Saturday, January15th I had the feeling.  It was close.  The next morning I was supposed to be with the Oneota Valley Youth Choir, a choir I co-direct with my mom and sister, when they sang at two churches.  I called my mom and told her I thought she had better arrange for a backup accompanist in case I couldn't be there.  Then I called my sister, who was planning to attend Luke’s birth as my doula.  She agreed to come up that night, just in case.  After that, I went back to folding laundry, timing contractions and trying to relax.  Now it was time to wait. 

My two previous births had been C-sections.  Gwenyth, because she was breech with the cord wrapped twice around her neck.  Colin, because the hospital I delivered at did not allow VBACs (Vaginal Birth After Cesarean).  This time I was planning a VBAC in La Crosse, and while I was nervous, I was also very excited to have a natural birth for the first time.  

After a restless night with little sleep, I got up and finished packing my bags.  I took a shower and figured we would head up to La Crosse around noon.  At 10:15 am my water broke and reality hit!  This baby was on the way!

My labor progressed and everything went just as planned.  I had beautiful music playing in the room, the lights dimmed, and my two coaches (Matt and Karin) with me.  I labored for several hours with my eyes closed, holding the birthing beads.  The beads, passed down for many years, each represent a baby born in my community.  It was a reminder of the women who had given birth before me.  Besides a small fainting spell due to low blood pressure, which resulted in the need for fluids to get my energy back up, there were no other unexpected moments.  I have my doctor to thank for giving support, but also letting my "team" work with me, uninterrupted, for much of the time.

I’m not going to pretend that the whole labor was flowers and music.  It wasn’t.  The clearest description of my birth process was that it was intense, but exhilarating.  I would love to give birth again, but as you know, Luke made 3, and that was the plan from the beginning.

We were listening to Chopin as Luke was born, and it was glorious!  Being able to catch my baby and pull him to my chest was an indescribable feeling after having 2 babies surgically born.  Both of those times my babies were shown to me and then taken way for several hours (Gwen), or even several days (Colin).  I was in love from the moment I laid eyes on him.  My Luke.  The baby I had planned for, dreamed about, felt growing inside for the past 9 months.  He was here.  Our family was complete.  There was a brief moment as I looked at him for the first time – his eyes?  his ears?  Karin said “look at how long his tongue is.”  Those thoughts were so fleeting I wasn't even really aware I had even thought them until the next morning.  In the moments after Luke's birth I saw what I wanted to see – the baby I had imagined during the past 9 months.

I held him for the first hour.  He was quiet and alert – looking at me with the most beautiful eyes.  We just stared at each other and both fell in love over and over again.  I was on a high! 

The birth, my baby – everything was exactly as I had planned.  We marveled at how Luke latched on to nurse so quickly.  We smiled and laughed about how I had asked for a C-section right before I started to push.  We took pictures with the quilt I had finished only a few days before.  We watched as the nurse gave Luke a quick bath before giving him back to me to take up to our room for the night.  

It had been perfect.

The birth had been amazing, and I had been able to share those moments with my husband, my sister and my beautiful baby Luke.  I had finally been able to give birth - a rite of passage into womanhood.  It was a day I will never forget.

Welcome to the world Luke Michael!
January 16th, 2011
Born at 11:39 pm

7 lbs 11 oz and 21" long

Continue with: Luke's Birth Story Part II: Our New Journey

Luke makes 3

When Matt and I were going through premarital counseling with our pastor, one of the questions we were asked was how many children we wanted to have.  In separate rooms we each answered 3.  Well at least we agreed on that!  We also agreed that we didn't want children any time soon.  We were both 21 years old and still in college.  We had so much time and didn't even think about having children for the first several years of our marriage.  Finally one day in August of 2005 we looked at each other and decided that it was time to start thinking about it. . . 9 months later Gwenyth Kay graced our lives!  What a beautifully easy baby she was.  Calm and content and the center of our lives.  :)  Two years later it was time again and Colin Martin joined our family.  This time it was not as blissful.  Colin was fussy and had colic.  He didn't sleep well and proved to be a difficult baby and toddler.  Still we loved him and hugged him and told ourselves it would pass . . . (that will be a post for a different day!)

When it came time to decide about a third child I have to admit it wasn't as easy as it seemed at our counseling sessions before we were married.  We were pretty sure we wanted another child, but after you have children you realize the amount of work that is involved!  We decided if were going to do it - the sooner the better!

I took the pregnancy test the morning after we moved all of our belongings to Decorah.  The house was full of unopened boxes and Matt was leaving in a few days to finish up the last two months of residency in Mason City while I stayed in Decorah with Gwen and Colin to get the house in order. . .  I didn't quite hold up my end of that arrangement!

Baby #3 was on the way and we were so excited!

4 weeks pregnant at our new house

Luke makes 3!

2 dinosaurs and a fairy  :)

Now I'm going to get into a subject that may be a bit sensitive for some people. 

Just because I was happy NOT having the AFP test doesn't mean that every family functions that way.  I want to share our experience with it because we were surprised at how we felt after Luke's postnatal diagnoses, knowing that we could have potentially found out earlier.

We had the AFP test done with our first two pregnancies.  "To be prepared" we had said each time.  This time it was different.  We had no insurance and the window of opportunity for the AFP fell while we were between Matt's jobs.  No big deal.  I was only 29.  I didn't even really think about it until after Luke was born.  One of the biggest realizations I came to after Luke's birth was that being uninsured for those 3 months was a gift from God.  I am SO incredibly happy we didn't know about the Trisomy 21 until after Luke was born.  We never would have considered ending the pregnancy (like 90-94% of people who get a prenatal diagnoses of Down syndrome do.)  I think I would have just been stressed out wondering what our son would be like.  Instead, when we were told Luke had Down syndrome, we were holding him in our arms and looking at the beautiful face of our son. (more about that moment and day on another post)

It is a very personal decision whether or not you choose to have prenatal testing done.  I told myself I would want to know, be prepared, do my research, get the kids ready, plan for the future.  I really thought I would want to know.  What I didn't realize is that you can't diagnose a child.  You can diagnose an illness or a syndrome.  No one could "diagnose" Luke's amazing blue eyes or his blond mohawk.  No one could "diagnose" how he looks at me while he is nursing with the sweetest eyes - full of love. No one could "diagnose" how he kicks and get excited every time he hears his brother or sister talk or how content he is to sleep on his Daddy's chest.  And no one can "diagnose" what his future will be like.  I wish they could tell you those things when you get the results back from an AFP test or even before you decide to have one - but they can't.  An AFP test couldn't have prepared us for raising Luke.

  

Luke is going to La Crosse tomorrow for a 2nd echocardiogram.  His first echo, done at 24 hours after birth, came back looking great and no complications are expected, but please keep Luke in your thoughts and prayers tomorrow.



World Down Syndrome Day

Today (3-21) is World Down Syndrome Day.

Here is Luke Michael at 8 weeks.



"I wish they would only take me as I am"

-Vincent Van Gogh