Thursday, March 31, 2011

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. 

Saturday, March 26, 2011

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.

Thursday, March 24, 2011

Good News!

Luke passed his heart echo with flying colors! 
The doctor said he will not need to have any follow up work done. 

On a side note:  Luke's mohawk was a hit at the clinic.  It is becoming famous!  The doctor had actually written a note about Luke's hair in her report a month ago.  :)

Luke is working hard
Luke is not happy!

Luke is tired.


Wednesday, March 23, 2011

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

Tuesday, March 22, 2011

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.

Monday, March 21, 2011

World Down Syndrome Day

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

Here is Luke Michael at 8 weeks.
Claire Thompson
"I wish they would only take me as I am"
-Vincent Van Gogh


Welcome to the Decorah Thompson's Blog!   Blogging is not something I ever considered doing - but as you will soon learn we have a very special blessing in our lives right now, and it is a story we want to share with our friends and family.  I am not a writer.  I'm going to put it right out there.  I express myself in many ways - but writing is not one of them.   Nevertheless, I feel the journey we are embarking on with Little Luke is one we want to invite you all to be a part of, and I think this may be the best way to do it.  So . . .off we go!!