Monday, June 27, 2011

Garage Sale Finds

I never used to garage sale.  We have too much stuff in our house as it is, and I don't enjoy sorting through other people's junk.

But for Claire, I've made an exception.  Most of her wardrobe is from garage sale and thrift stores.  Kids outgrow clothes so fast, that I can usually get practically brand new clothes for next to nothing.  And that makes me happy!

Darren found a slide this weekend.  I'd missed out on one the weekend before, and I was so excited he was able to snag one.

Claire REFUSES to go anywhere near the ladder, but will slide down on her own.  She gets a little out of control, but is ready for more when she hits the bottom.

signing more


In unrelated, but super exciting signing news.....last week we really worked on 'cracker'.  She was getting it down, but we haven't had the chance to practice for a few days.  Last night she was eating dinner and I was sitting next to her eating crackers.  Completely unprompted, she signed cracker and pointed to what I was eating!!


This is my favorite garage sale find so far.  The people left the batteries in it and it corroded, so it doesn't make noise, but the chair is the PERFECT size for Claire.  And, she can get in and out of it on her own, which is what I was hoping for.

Friday, June 24, 2011


I'm always proud of my girl and all of her accomplishments, but this week, so many things are just clicking for her. 

I got her a weeble tree house this week.  There is a conveyor with a crank to get the weebles to the top of the slide.  She had the crank figured out in minutes with minimal hand over hand instruction.  Even though she can work the crank, she tends to get impatient before they make it to the top, and they usually end up placed on thrown toward the slide.

Claire has been walking with two handed support for months.  We've tried one handed, but she's always turned and looked for that second hand.  We had PT last week and got her walking with just one handed support, and now just a few days later she doesn't even need to feel your legs behind her to feel comfortable.  She's not completely stable with one hand, but I think we'll have independent steps soon!

But even more exciting than the stepping, is all of the signs that have been pouring out of Claire.  She has a few that she uses spontaneously and appropriately (milk, dad, all done, dog, eat) and some that she uses with prompting (more, baby) but this week she has been mimicking so many more.  We've seen hat, cracker, nice (she's been seeing this one a lot as she's in a hitting/scratching/rough phase), water, all gone, sleep.  I'm sure there are more she's using too, and we are either missing them, or we aren't understanding her approximations.  I'm excited for the burst in communication as she has been getting frustrated lately when we don't understand what she's asking for.

These pictures don't really have anything to do with this post, but I've been meaning to post about Bear's buggy for almost a year....Darren claims this buggy is Claire's, but I think she was just a convenient excuse to get it.

Friday, June 10, 2011

Heart Day

Yesterday was a big day.  One year ago we handed our not quite five month old baby to a surgeon.  One who obviously cared about her and loved healing hearts, but never the less one who was going to forever scar her tiny body.

Claire blew through surgery and recovery with the strength we have come to expect in all she does, and we were home in just three short days.

Last summer was quiet.  There were restrictions that came along with open heart surgery and we laid low.  We had fun, but it was low key fun.

This summer will be different.  We have big plans. 

This summer we are going to swing higher, splash harder and soak up all the warm weather activities we can.

We started our summer of fun with a hastily put together BBQ last night.  There were bubbles, chalk, good friends and lots of food. 


Last night before the BBQ, on what was supposed to be a completely joyous day, Claire had an accident, and it was my fault.  We live in a bi-level, which of course means stairs.  I came in last night in a rush, and either didn't close the gate at the top of the stairs at all, or else I missed getting it latched completely. Either way, she found the open gate and fell down the stairs.  I heard the thump and my heart dropped.  She didn't start crying until I got to her, and she honestly looked more surprised than anything at first.  Once I picked her up the tears started, and we sat on the floor and cried together.  After she quieted down we moved arms and legs and all seemed well.  I know she's ok, she was fine at the BBQ, but today the guilt hangs heavy and tears keep pricking my eyelids.


I'm not very good at asking for help.  I get overwhelmed and tired, and still feel the need to do it all.  The problem is, doing it all seems to mean not doing any of it well.  (See above if you skimmed...)

In an attempt to make things more manageable, I'm asking for help.  Or rather, I'm paying for help.

I've never enjoyed cleaning my house.  When there are other things going on (and aren't there always?) it's an easy chore for me to ignore.  But my filthy house is just one more thing that is bringing me down right now.  Yesterday was our first cleaning.  The house felt better, but I know it will take another time or two to reverse all the damage my lack of cleaning has done. 


We have our summer vacation book and I am SOOOO looking forward a break.  I know where a lot of my bloggy friends live, but not all of you.  So, if you are in Michigan, send me an email (email link is in the upper right corner) as I'd love to meet you in person while we are there.

Wednesday, June 8, 2011

Suited Up

This weekend was hot and muggy and Claire needed to cool off a bit.  The new water table is (mostly) set up, but even without all the attachments attached Claire was happy.

Distracted by the box...

This face means it's time to head in...

Tuesday, June 7, 2011

The perfect follow up....

to the comments that hurt.

Found posted on Missy's blog.

See Me For Me

When you look at me -

What do you see?

When you look into my eyes
Do you see beautiful blue,
sparkling with joy, delight
in my accomplishments

Or do you see that "almond shape"
or "brushfield spots"?

When you look at my hands
Do you see them reaching
for toys, writing the alphabet,
throwing a ball, doing a
meaningful job

Or do you see a "simian crease"?

When you look at my face
Do you see the resemblance
to my parents, that I have just had
my hair permed

Or do you see a "flat face" or
"epicanthal folds"?

When you look at my behavior
Do you see my feelings of
pleasure and anger, my desire
to achieve, my frustration in
being treated like a baby

Or do you see the "stubbornness"?

When you look at my development
Do you see me playing with peers,
participating in sports, growing
into a productive adult

Or do you see "low muscle tone" or
"the eternal child"?

When you look at my family
Do you see loving parents wanting
to challenge me to my ultimate potential,
sisters and brothers who have a better
understanding of the differences in us all?

Or do you see a family torn apart by my
difference, constantly in crisis, unable
to accept, never to feel the joy of
having a "normal child"?

What Do You See?

Look At Me.

Look Closer.

See Me For Me.

Written by :
Donna Roll
Dedicated to
Mary Ellen Graham
Founder of the DSAGC.

Sunday, June 5, 2011

The comments that hurt....

A couple of weeks ago there was a woman on one of those daytime talk shows that made some nasty comments about people with disabilities in general, and specifically about Down syndrome.  I don't watch much TV, let alone daytime shows, so I missed them comments themselves, but from the posts that popped up all over Facebook, I can imagine the things she was saying.

And for the most part, those people don't hurt me.

Usually, I feel sorry for them.  When they choose to broadcast ignorant, hateful, disrespectful words, to try to bring others down to make themselves feel better, I feel pity.

Those people are on the outside.  They don't understand acceptance and love, and they probably never will.

I expect ignorance from people who don't know anyone with Down syndrome.  I was there.  Before Claire my assumptions of what life with Down syndrome would be like were inaccurate, outdated and just plain wrong.

I expect more from people who are part of our lives though.  When someone actually KNOWS Claire, has seen this smile and the joy she radiates, and all they can say is "her life is going to be so hard...", that's when I feel like I've failed.

 Seriously?  That's all you've got to say?  Nothing about her hard work, perseverance, or determination?

 Nothing about her great smile and contagious laugh, or about what a little charmer she is? Or about how easy going she is, or even the stereotypical comment about how happy she is all the time?  (if you'd seen any of her recent temper tantrums, this comment wouldn't pass your lips)

Nothing about how great it is to slow down and really celebrate the accomplishments and milestones that usually fly by so fast?


So, to the person who made the comment about Claire's hard life....Open your eyes.  There no reason to think Claire's life is going to be any harder than yours.  Her extra chromosome doesn't mean hardship and despair, any more than your typical chromosomes mean things will always be rosy for you.  You have an amazing PERSON in your life will be able to teach you so much, if you give her the chance.


I know this post is preaching to the choir, but since I don't know which of my acquaintances (or friends?) made the comment, this is where I get this off my chest....

Wednesday, June 1, 2011

One word....





That is me and my calendar for the next three weeks. 

My full calendar started this past weekend with an awesome visit with my aunt, who was in town to run the Bolder Boulder.  My dad and aunt came our direction to visit for a bit, the next morning we headed their direction for some race festivities, and then the following day Claire had tubes put in her ears. 

We didn't get to see much of the Bolder Boulder, but did get to see the elite runners and some of the memorial day program.  Sky divers brought in flags for each of the military branches, and the Stars and Stripes.

Claire's tube surgery the next morning was as quick a process as everyone said it was!  Her surgery was at 9:00 and we were on our way home by 10:30.  She slept a lot of the day, and was a bit crabbier than normal, but really she did great with the whole thing. 

Claire's nurse (in the background of the first picture) was awesome.  He and is wife are both nurses, and they do foster care for medically fragile children.  Claire's other nurse had an adult daughter with Ds.  It was great to visit with both of them.

Claire went to daycare today, but I ended up picking her up early.  She was out of sorts and over tired, and came home and slept for almost three hours.  That is an insanely long nap for her!

The next few weeks are packed with dr appointments, therapy and work so there may not be too many exciting updates....except for Claire's first Happy Heart Day, which is next week.

Sorry for the crappy pictures.  The only camera I had with me this weekend was my cell phone.

Thank you for all of the birthday wishes, and for making it through what turned out to be kind of a random update!