Tuesday, January 21, 2014


What to say.  He started school.  It's only for 9 hours a week, but still.  He's my baby.  I get to be a little sad, right?

It took me a while to figure out why this time it felt so different.  I have sent 2 children to preschool and beyond with no problems.  After contemplating on it, I realized it is the fact that Luke is still basically non-verbal.  He can't come home and tell me what he did.  He can't tell me if something upset him or if he cried for 30 minutes because he had a tummy ache.  He also can't tell me all the good stuff, how he loved speech therapy or gym class.  So, it's different.  Not bad, just different.

I want him to be independent.  I want him to learn everything he can so he can contribute to his community.  I know it's good, but I'm going to miss having my little buddy around all day every day.

He's happy, so I'm happy.  :)

Birthday Traditions

In our family we are big on tradition, but small on parties.  My favorite traditions are the ones that involve the 5 of us and/or our immediate families.  For the kid's birthdays our traditions include a banner or garland over the door, breakfast of their choice, balloons, lighting their birthday candle, presents in the morning, lots of birthday songs, supper of their choice, a birthday book with messages from family, and a small party if we can schedule it.

Yup, this was the best one!  Colin wasn't upset, he just looks like it in this picture!

My favorite tradition is telling the kids the story of the day they were born, with lots of details about how excited we were, how we picked their name, what we thought when we first saw them, and who came to visit.  As they've gotten older, both Gwen and Colin have started asking questions as I tell their story.  "What did my cry sound like?"  "Did Gwen hold me when I was a baby?"  "Did I have teeth?" "Then how did I eat?" "Did I sleep a lot?"  I love watching them imagine themselves as babies.  Their faces just light up and I can tell it feels special to know how much we loved them before we even knew who they were going to be.

I tell Luke his story too.  This year I told it to him right before he went to bed and he was so quiet and calm while I talked to him.  I told him how beautiful he was and how I got to hold him right away.  How he nursed easily and watched me with his big open eyes.  How I got to hold him most of his first night because he was cold and needed a little extra warmth.  I told him how it was hard to sleep because I was so excited he was there and how much we wanted him in our family.  I explained that because we were in La Crosse we only had a few visitors, but that Gwen was first and she was SO excited to meet her new brother.  That is where I stop for now.  I'm not sure if we will ever tell him the rest of the story.  I'm not sure if it matters or not.  Maybe it does, but I hope I will know if and when it's time to tell him more.  For now I finish with, "You are sweet.  You are smart.  You are strong.  We love you."

Sometimes I wonder if words matter.  Does it matter that I tell the stories?  Will they remember the important parts about kindness, gratitude, and honesty?  I guess we may not know for many years, but it seems worth it to try.

This morning as I was giving Luke a bath Colin came in and said, "Luke, you are strong.  Luke, you are smart.  Isn't he Mama?"  I said yes and Colin continued, "You're little, but you can walk.  You can't read, but I'm gunna teach you even if takes a whole year."

Words do matter, and our children are listening.  We can't just hope that they know what is in our hearts.  We have to speak it out loud.  Over and over.  Because we all know kids don't always hear us the first time, or the second, or the third.


After I posted at the the beginning of December we decided to stop giving Luke milk at night.  Matt thought it might keep the phlegm down and keep him from coughing all night and waking up.  Since we stopped giving him milk, he has had no fevers and has been amazingly healthy!  We don't know it was the milk, but I can't remember the last time he has gone 6 weeks without a fever, so we are just thankful.

Monday, December 2, 2013

Bubbles do burst

I am aware that I have 3 children, but for right now I'm going to do a quick update on our past year with Luke.

For quite a while when people asked how everything was going with Luke I described it like this:

"It feels like we are on the outside of the bubble of Down Syndrome, looking in, just riding along."

Shortly after my last post (almost a year ago) that bubble burst.  Luke was sick for about 4 months.  It started in mid-November with night fevers.  By the end of December he had pneumonia that knocked him down for a few weeks.  We had a good week right around his 2nd birthday and then he started getting sick again.  Near the beginning of February we ended up sending him in an ambulance to a hospital where he and I stayed for 8 days.  Initially the doctors thought it was the pneumonia again, but it turned out to be RSV.  Soon after we came home he developed another infection that also seemed like pneumonia, but turned out to be post-RSV inflamation.  By the middle of March we had gotten through the worst of it.

It felt like a miracle that Luke started walking independently on March 21st, which just so happens to be World Down Syndrome Day!  You can't make this stuff up.  I couldn't believe that after so many months of sickness he had continued to make progress.

Luke continues to have respiratory issues.  Right now he is being treated for pneumonia which we had tried to get rid of just 3 weeks ago.  It's hard to continually say that "Luke is sick."  I am a pretty positive person and yet I can't lie when people ask how it's going.  It sucks.  It's exhausting to have a sick child.  I can no longer say "Besides having Down Syndrome, he is healthy and doing great."  The fact is, he is sick more often than he is well.  He catches every little illness that is within a mile of us and takes twice as long to get over it.  He gets fevers.  He gets worn out easily.  His body is just not very strong.

The amazing part is that while he is often sick, he is also learning so much and making tons of progress!

We are so blessed to have amazing therapists that keep me motivated, and keep Luke on track.  He still isn't verbalizing very much, but he has really taken off with sign language.  He understands a lot of what we say and sign, but is just beginning to communicate back to us.

Signs Luke can do himself:
All Done
Music (His favorite sign)
Thank You
Flower (He uses this for anything pretty)
Dog (His first sign)

Words Luke can say (although he doesn't use them very often):
Papa (my dad) - used the most
Daw (Dog)
Aah Duh (Addie, our dog)
nnn (In)
mm (more)
Mmahhhhh!!! (Move)
Chi Chi (Chicken)
tay too (thank you)

Christmas 2012

Hospital Stay Phone Pictures - February 2012

Summer 2013

Fall 2013

Friday, December 14, 2012

Letting go

Luke is quickly approaching his 2nd birthday and I can already see the "terrible" and the "terrific" emerging.  I have noticed that people watch me when Luke is crying on the floor as if to say "Why don't you pick him up?  He's crying!  He has Down syndrome!  He doesn't know what he's doing!"  Slow down, I want to say.  He knows EXACTLY what he is doing.  That cry?  That is because I took that piece of paper away from him.  That rolling and fussing on the floor?  That's because I just put a hat on him and he doesn't want to wear it.  He may not speak yet, but don't let that fool you.  He is an almost-two-year-old who is throwing fits when he doesn't get his way, just like all other almost-two-year-olds do.

I remember the best advice I got when I was pregnant. It was, of course, from my own mother. She said, "Don't ever get too comfortable. As soon as you have entered one phase and feel like you have it figured out, a new one will begin." (Or something close to that) What I love, and despise, about this advice is that it is true for the phases that are frustrating (kids that won't sleep, or eat the food you want them to), but it also holds true for the phases that you love and want to hold onto forever (rocking your baby to sleep, or a cute bear crawl).

Luke is taking more and more steps every day, and has no problem pushing me away if he doesn't want help or getting between me and a toy if he wants to do it himself.  I love his fierce independence and I know it is going to serve him well as he continues to grow.  As usual, it's not going to be Luke that has a problem letting go, it's going to be me.

We are quickly approaching a very new phase for our family.  Kindergarten. 

Yes, I realize you all read the post about how Gwen and Colin are going to Kinderhaus together and how great it was to see them heading off to school together.  That was all true and wonderful while it lasted, but like all phases, it was over as quickly as it began.  It has nothing to do with these two siblings getting along, and it has everything to do with the different needs of my 3 year old and my 6 year old.

So ... in the spirit of letting go, I had to look at Gwen and realize that she was ready for a different adventure.


We are enjoying the advent season of preparing for Christmas.  This is one season that can't be rushed, even if you try.  The kids want to take down 2 numbers on the advent calendar, but I have to explain that Christmas won't come any sooner by doing that.  It is a season of waiting and anticipating.

One of our favorite traditions that began when we moved to Decorah was cutting our own Christmas tree.  The first year it was FREEZING cold and snowy, and I was pregnant with Luke.  The second year it was freezing rain and also freezing cold.  This year was perfect.  Not too cold.  No snow, although I would have preferred to trudge through at least a few inches of snowy white!  The kids enjoyed helping Daddy carry the saw and would have pulled the tree themselves if it hadn't been SO big and heavy!  And for the record, no, it did not fit easily in our house.  It never looks that big until you are looking at your front door ;)  One year we will get it right!
Pictures from the past:
December 2010 - Kids are 2 and 4, and I am 8 months pregnant with Luke
 Happy Advent and Merry Christmas!

Tuesday, October 2, 2012


When Luke was born I wondered when someone I knew would have a child with Down syndrome. It was sort of a strange, selfish wish really. It wasn't that I wanted someone else to go through the pain and struggles of those first few days, weeks ... it was that I was excited to share the joy that came out of those times.  I want to welcome to the world two little boys born with an extra chromosome in the past 2 months. I am so proud to know you and your parents, and I can't wait to share the joys and struggles that are present in this journey.


I love being outside in autumn.  I love it so much that my house gets really messy and nothing gets done inside because I know that soon I will have all the inside time I need or want.  Last summer Luke was stationary.  This summer ... well, he is mobile and loves to eat dirt, or rocks, or sticks, or anything else that is within reach.  That has made out outdoor time a little more exciting this summer. 

Today I was not feeling well and yet, as you parents know, our job doesn't stop just because we are under the weather.  After attempted naps that did not happen and Tylenol that did not work, we went outside.  I was pretty sure that Luke would start putting things in his mouth and we would have to go in, but instead he discovered the leaves.  He crawled up the hill to the backyard and found a little spot right next to the woods and just grabbed leaves and threw them up in the air over and over.  Not once did he try to eat them  :)  Progress!!
My only regret was not catching the beautiful smiles that were quick and brief as the the leaves fell down on him.
While Luke entertained himself with the leaves, Gwen and Colin worked hard at shucking beans from the garden.  They had fun finding all the different colors of beans in the drab and dried out pods.
Get outside and into a tree before it gets cold!
On Saturday, October 6th, we will be participating in the Step Up for Down Syndrome walk in La Crosse, Wisconsin.  We have been involved with the local organization, Children of the Heart, since Luke was born.  If you live in the area we would LOVE to have you walk with us. 
If you are interested in donating to Luke's team - here is the link.  
Fundraising is not my forte - but in this case I see it as a way to give back to an organization that has been an invaluable resource to our family for the past 20 months. 

Monday, September 10, 2012

A new year (school that is!)

When Gwen was 2 years old I read the complete Winnie-The-Pooh and The House at Pooh Corner books to her. I thought I had read them before, but as I read each chapter aloud, I realized I only thought I knew all the stories. It wasn't an easy book to read aloud, and even harder to keep a 2-year-old interested with the difficult language and winding thoughts of Pooh and his friends. And yet, I enjoyed reading it to her and she enjoyed listening to it, or at least she enjoyed the special time we spent reading together on the twin mattress tucked into the corner of her tiny bedroom of our home in Mason City. It was a simple time. One child to care for. One child to read to. One child to put all my efforts into. Sometimes I long for that time with my boys. I try desperately to get quiet, alone time with Colin and Luke, but it's just harder. Now I realize how special those years were with Gwenyth.

As we worked our way through the book I looked forward to reading the next adventure of Pooh and Piglet. I found myself loving the characters as if I were a child again. So, when the ending came, I was unprepared. I had read the book with a child-like mind, until the last chapter when I was snapped back to adulthood. I tried to keep myself together as I read the last chapter, but the tears flowed and a very confused 2-year-old couldn't understand why Mama was crying over Winnie the Pooh and Christopher Robin.  I will let you read the chapter for yourself as you send your own children off to school for the first time...

A week ago Gwenyth and Colin started their year at Kinderhaus. It will be Gwen's 3rd and final year there, and Colin's 1st year. I struggled with the decision of education this year. When I stand back and look at it, it is a decision of privilege. We were choosing between a wonderful public kindergarten or a wonderful outdoor multi-age preschool. Wow. There are parents in this world that would give up most anything to have one of those two options, and here I am with two.

Well, right up until Kinderhaus began I questioned if I had made the right decision. I felt strongly that they should go to Kinderhaus together, and yet as I talked to other parents I wondered if Gwen should have gone to Kindergarten, or if I should have kept Colin home one more year, or if I should have sent him for 4 mornings instead of 2. So many choices, and so many different opinions! I had to stand back and look at my family, my children and myself to make the final decision.

The answer because crystal clear the first morning they attended Kinderhaus together. Watching them work together and look forward to spending time together made my Mama heart smile!

Gwen checked Colin's backpack to make sure he had his water bottle and rain pants. She helped him pick out his clothes and get all his outdoor gear on. She told him all about what the day would be like and said over and over "It's going to be SO fun!!"

Once we arrived at Kinderhaus she lead the way to put their backpacks away and later she told me that she even asked the teachers to move his "cookie" (a flat stump to sit on for circle time and snack) next to hers during snack time.

I'm sure there will be days where they argue over who gets to hang up their backpack first, or who gets to tell me about the day, or any other number of small things that are blown up into the world's most important moment in the eyes of a child. While those moments will try my patience and I will think longingly about that first day, I know that these memories will stay with them for a lifetime.

So - we say goodbye to another summer and hello to the schedule and rhythm of the school year.

It's going to be good.