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  :)


  1. I am always inspired by your updates and always learning from your courage and strength. May the Light of God's Wisdom forever guide you every step of the way.

  2. Luke couldn't have asked for a better Mommy. How blessed you are to be able to raise that beautiful little boy. Thanks for sharing your heart and may God guide you through your lives.
    Crystal Egland

  3. Claire,
    It looks like Colin's and Luke's hair are both growing! We miss them both. And Gwen, of course!
    Yes, phases. Patience and love.
    We love you all.

  4. Sue says:
    Hi Claire, my Katie born in Feb, sat up in Nov, that was 9 mos, it was so precious. She did it when I wasn't looking, so I laid her on her side and watched her roll over, push up on her left side and there she was, they become stronger the more you let them on the floor and do their THING :). She began to combat crawl at 12 1/2 mons and then the 4-T (as they call it) within 1-2 weeks. Her muscles strengthened quickly. Never used a johnny jump since their hip joints are VERY loose. They strengthen in time by walking between you and Matt. It is so much fun watching their knees come up to their chin and no, I am not exagerating. Walked the furniture at 12 mos and climbed the stairs at 15 mos. and down the stairs within 2 weeks, it was all taught by verbal prompting. When you get to that point of stairs, contact me :)


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