Step Up!

It may take me a while to catch back up, but here is the beginning...

On October 1st we participated in our first "Step Up for Down Syndrome" walk in La Crosse, Wisconsin.  It was one of those beautiful crisp Fall days where the sun shines and makes the trees glow with color.  What a stunning backdrop for our first walk. 

As I put on my T-shirt with the words "Step up for Down syndrome," I had a sense of belonging, as well as the unfamiliar.  To actually wear the words "Down syndrome."  And not just to support a cause, but to support my son.  To publicly show my acceptance and love, not only to people who know Luke, but to those who don't.  It felt both strange and powerful all in one.

Looking around, I couldn't help but think how I would have missed all of this if Luke hadn't been given to us. 

I would never had seen these eyes...

or witnessed this moment ...

or this one ...

or this one...

or this one...

This, by the way, is my favorite picture of the day.  If you read RubyAnne's balloon you see it says "Walkin' for Aunt Bee.  A Valuable Life."  RubyAnne's aunt had Down syndrome and passed away this past June.  Seeing this little girl hold that balloon with the words "A Valuable Life" takes my breath away.  Valuable.  Choose your own definition.

I would have missed so much without Luke.

Before the walk began there was a speaker named Karen Gaffney.  She was the first person with Down syndrome to swim in a relay across the English Channel.  She spoke about one of the issues that I worry about most.  Friends.  Her message was quite simple.  Sit down.  Talk.  Be a friend with someone who may not seem the same as you.  Once you take that chance, you may discover that you are more alike than different.

It was a good day.  A valuable day, to celebrate valuable lives. 

Apple Cider

Today we attended a field trip for Gwen's preschool where we pressed apples to make cider.  What a wonderful way for the children to experience community, and take pride in their work.  The children participated in each step from picking the apples off the trees, cutting the apples, pressing them and then the glorious satisfaction of drinking the cider they had made as a community. 

I think these pictures will speak for themselves. 

(You can have fun picturing me taking these photos with Luke in the front pack...)

Tomorrow we are participating in the Step Up for Down syndrome walk in La Crosse, Wisconsin.  We are so proud to be a part of this community and can't wait to show our support tomorrow!  If you happen to be in the La Crosse area, please consider joining us. 

Registration begins at 10:00 am with the walk beginning at 11:00 am.

http://dscoth.org/coth/Step_UP_for_Down_Syndrome.html

Also - thank you so much to those of you who have donated to Luke's Team.  I am not very comfortable asking for donations, so this was a bit out of my comfort zone.  COTH was responsible for the wonderful resources we were sent home with after Luke's birth. We do not pay dues to be a part of this organization and Luke is able to participate in music therapy free of charge.  Above all, COTH is giving Luke and our family a support system that is invaluable.  So, thank you for loving Luke and supporting this wonderful organization.  We are truly grateful for our community of love and support.

Brothers

 

Blessed is the servant who loves his brother
as much when he is sick and useless
as when he is well and can be of service to him.
And blessed is he who loves his brother
as well when he is a far off as when he is by his side,
and who would say nothing behind his back he might not,

in love,

say before his face.
-St Francis of Assisi

 

Superman!

Did you know that opening up the hand is a developmental milestone for a baby?  This was news to me, and I have read a lot of books about babies and children!  With my other children I never had to think about their development.  It just happened.  Of course I helped them by reading, playing, singing and talking with them.  But basically, I put them on their tummies and eventually they started crawling and walking without me noticing the smaller steps along the way.

This time I have to pay attention.

 

 

We know that Luke will eventually walk and talk, but there is a high probability that those things will take a little longer for him.

Gwenyth, 6 months

Colin, 7 months

Luke, 7 months

When Luke was a month old we were visited by our Service Coordinator (SC) and a nurse who were assigned to us by the Iowa AEA.  They came with resources, contacts, and a plan of attack to make sure Luke had everything he needed.  The reinforcements had arrived!

Luke has an Individualized Family Service Plan (IFSP) which lists our goals for Luke.  It is the birth to 3 version of an Individualized Education Plan (IEP) for those other teachers out there.  :)  Every month from now until Luke is 3 years old, our SC will come to our home and work with Luke and our family.  Besides our SC's visit, we also have had visits from a Physical Therapist (PT) since Luke was 2 months old, and as of last month we now have a Speech-Language Pathologist (SLP) who will also be visiting each month.  These services are all free through the AEA under the Early Intervention Program.  I am grateful for these amazing professionals who are so caring and knowledgeable.  It really does take a village.

So, the story of the superman pants ...

Phone picture

At our PT's first visit she pulled out these little red pants and said that when Luke was a little older we would have him wear them to help strengthen the correct muscles in his core.  As she looked at the pants and at Luke she paused and said she guessed we could try them on him.  (I believe she said she hadn't used them with a baby as young as Luke before.)  I couldn't believe it!  Because Luke has hypotonia he tends to lay with his arms to the side, head to the side and knees turned out.  When we put the little red pants on him I actually gasped!  I hadn't even noticed that he didn't hold his body like my other children had.  The pants pulled his hips into alignment and immediately I could see that they would help him. 

Hello Superman Pants! (yes - capitals!)

Now when he wiggles around, rolls, and pulls up his knees he is strengthening the correct muscles in his core that are essential to roll, sit up, pull up and eventually walk.  We have SO many pictures of Luke wearing the superman pants, but it's not so much that he wears him, but what he can do because of them. 

Things like this ...

and this ...

This may look like a tired baby to you, but I see the movement from tummy to sitting up here.  Knee up, hand in the right position ... not quite strong enough, but the foundation is there.

I appreciate every small step.  Nothing is lost to me.  I notice every movement of Luke's body, every muscle he uses and those he avoids.  I notice how his eyebrows raise when mine do and that he mimics my vowel shapes when I talk to him.  I also notice other babies his age, or even younger, that seem so much older.  It doesn't bother me because I am completely in love with my Luke, but I do notice it. 

We get to experience all the typical milestones with Gwen and Colin.  Luke is our adventure.  There is an innocence in his eyes that I fall in love with each and every day.  A look of love and trust.  A look that makes me put his superman pants on yet again, and take the time to work with him, because he deserves it.  And because I don't want to let him down. 

As Colin says whenever Luke has his pants on ...
"Super Luke!"

Maybe it's not the pants that are super, but rather the boy wearing them.

In other news: 

Gwen is back at Kinderhaus for preschool this year.



1st day of Kinderhaus 2010



1st day of Kinderhaus 2011 (with a sleepy Luke)

I love how growth is measured not in inches, but in stones on the fireplace...

Have a wonderful weekend.

Catch up ...

Well, hello fellow readers!  It's been a while since I've had a chance to sit down and write.  Today is no different.  Luke is playing on the floor next to me as I write this post, and Colin and Gwen are at the campground with Nana and Papa waiting for me to come and join them for supper. 

(Mostly I'm going for the smores!)



The past few weeks have been busy with food.  Growing.  Freezing.  Canning.  Feeding (Luke).  And of course - eating!  The empty jars from winter are filling up again, and the freezer is once again a treasure of food waiting for colder weather.

We are holding onto the last days of summer, and enjoying our beautiful town.

I haven't been doing this photography thing very long - but just going to Dunning Springs in Decorah is inspiration enough for anyone.

Believe it or not, this is not the first time time Colin has been naked in public this summer.  I just happened to have the camera in hand this time!

My little girl is growing up.  I have seen a change in her eyes this summer.  That look of understanding.  That look of determination.  That look of wanting to finish an ice cream cone before it melts.

 Luke can crawl, if only his body would let him.  Every once in a while his gets his knees up under and launches himself forward.  He knows what he wants to do, but his body keeps getting in the way.  Still, he manages to get around with rolling, pivoting and reaching really, really far!  He's quite a guy. 

In Colin's words,  "Love Luke." 

What else can you do with a face like this? 

Luke is now in my lap ... time to go ...