Saturday, July 30, 2011

The "To Do" list

I have always organized my life with lists.  When I was in high school I used to keep lists of names for future children in the back of my daily planner.  I had long lists of books I wanted to read, movies to go see and music to listen to. 

I love the organization of a good list.  By putting the thoughts down on paper it feels like it's going to happen.  It just has to.  I keep lists of projects I want to do, hobbies I want to take up, places I want to go, people I want to have over for supper, new recipes I want to try, gifts I want to give people ...

I also have the ever present "To Do" list.   The "To Do" list is (in theory) the most urgent.  Things that need to be done now (or yesterday). 

My problem is, I can't get beyond the "To Do's" into the "Want To's."

Sadly, I have realized that the "To Do" list is never going to go away.  My house will never be completely organized.  My windows will never all be clean.  The laundry will always be there.  There will always be another project on the "To Do" list.

So how do we move on to the "Want To's?"

Maybe, just maybe, we need to stop trying to finish the "To Do" list and focus on the "Want To" list instead ...

My first edited photo - something off my "want to learn" list
My nephew Gabriel joined our family for the past week so he and Gwen could attend a soccer camp together.  The kids had a great week of playing, going to the zoo and getting dirty!



 Happy Weekend!

Sunday, July 17, 2011


I know many people wonder how we are doing, not just on the outside, but at home, when the doors are closed and no one is around.  The honest truth is, we are doing great.  At least as great as you can be doing with three kids 5 and under!  Yes, our lives have changed, and yes, there are challenges ahead we never imagined for our life.  I worry about the future some days, and then remind myself to take it one day at a time.  Mostly, are thankful every day for our son, who is leading us down a path of patience, understanding and compassion.

Over the past 6 months there have been several different phases:
1) Shock:  Down syndrome... what??
2) Denial:  Maybe they got it wrong.
3) Depression: I can't do this.
3) Pull together:  We will do this.
4) Reality.  This isn't going to go away.  Now what?
5) Realization:  Look at our amazing baby, who has Down syndrome.
6) Acceptance: Look at our amazing baby, Luke.
7) ????

The first 4 phases went quickly.  Number 5 was with me for a while.  The words "Down syndrome" went through my head every time I looked at Luke, even if I wasn't trying to think about it.  Now I am in between 5 and 6.  I still think it sometimes, but other times I forget he even has Down syndrome.

It's hard to know what the next phases will be, but I have a good idea about one that might hit pretty soon.  I get these weekly updates from  I have gotten them since I was pregnant with Gwenyth almost 6 years ago and it's a fun way to know what is coming up, both with pregnancy and with child development.  Up until today, Luke has been pretty much right on target.  The one I got today, 6 months, talked about sitting up and crawling ... two things we are not ready for.  Luke can scoot forward and roll over, but actual unassisted sitting and crawling may take us a bit longer to achieve.  I knew this was coming, but sometimes it's the little things that snap you back to reality.

So, I think phase 7 is going to be "Pull Together II: Don't give up."

Here are a couple of photos of Luke "sitting up" and "crawling."

We'll get there!

Medical Update:  Luke had an appointment this week in La Crosse where he met with several different specialists.  He passed his hearing test with flying colors, and his thyroid test came back with no problems.  Hooray!
The doctors were impressed that he is still nursing so successfully, and were pleased with his developmental progress. He is around the 75% for weight and the 15% for height, on the Down syndrome growth chart.  He was given the go for solid food, so be checking back for some fun pictures next week  :)

Sunday, July 10, 2011


I have a confession.  I have become a stalker.  Not the creepy type (hopefully), but the aware and interested type.  I find myself looking for people with Down syndrome (or any disability) everywhere I go.  When I see someone, I just want to watch them.  Ok, I realize that does sound a bit creepy, but I promise you it's not!  I want to watch and learn.  I want to see how people react to them, and how their friends interact with them.  I want to learn how to be a part of this new world.
Making silly faces!

For you other mothers out there, it's a little like when you were pregnant for the first time.  All of a sudden you see expectant mothers everywhere you go.  You try to figure out how far along they are.  You notice if they have other children.  You take note of what they are wearing and how they are walking.  It's a learning experience.

A couple of months ago Matt and I took Luke to South Carolina for a week.  During that week, we observed two different families traveling with children with autism.  I was locked into these families.  I know staring is not socially acceptable, so I tried to be cautious, but it was so amazing to watch.  I had the opportunity to tell one of the mothers how wonderful she was.  Her son must have been around 12 years old and she parented him beautifully.  She let him have his space, intervened when necessary and showed him love every step of the way.

My eyes have been opened.  In the past, I never would have seen that mother for who she was, or her son for who he was.  I would have looked away.

It is embarrassing and humbling to become aware of your own ignorance.   How often do we only interact with people who are easy to talk to?  Easy to understand?  Easy to accept?

A little child shall lead them.

Luke has already made me a better person and he is only 5 1/2 months old.  It's hard to remember who I was before his birth.

Before Luke entered our lives, I turned away.  Not because I didn't care, but because I didn't know how to interact with someone who was ... disabled  ...  handicapped ... had special needs... I'm not sure what word to use.  I know now how to use person first language, but beyond that I still struggle with how to talk about disabilities.  I also struggle with the term "special" because I think all people are special, not just ones with different abilities.  And yet ...  Luke is special, and he will have different needs throughout his life.  It may sound strange, but I am still not entirely comfortable around people with different abilities, but now I make an effort.  I try.  I put myself out there, and dare to make a mistake. 

"You'll grow into it."  That was the advice from a mother who has raised a daughter with an extra chromosome for over 20 years.  She reassured me that there is time to figure everything out, or at least some of it.  I can't imagine we'll ever have it all figured out.


Since Luke's birth, I have become aware.

Aware of every single person around me.

Aware that most TV shows, commercials, books and magazines do not have images of people with different abilities.

Aware that at some point the other shoe is going to drop.

Aware of how people look at Luke.

Aware of conversations that deal with marriage, college, moving out ...

Aware that I am now a "press 2 for pediatric specialty" instead of a "press 1 for pediatrics."

Aware of every interaction I have with Luke, and wonder if I'm doing enough.

Aware of pregnant mothers, and how unaware they are.

Aware that I have most likely had interactions with people who have terminated a pregnancy due to Down syndrome or another prenatal diagnosis.

Aware that we all have disabilities, some are just more obvious than others.

Aware that our family has gotten closer because of Luke.

Awareness is a single step, and one that will most likely seem small in a few years.  But for right now, it's a big one.  I wish I could say I knew all of this before Luke entered our lives, but I didn't.

My eyes are opened and I will never go back.