Wednesday, May 14, 2014

Older Kids vs Younger

Allison is definitely the tail-end of the family.  I realized this week that she thought the book fair at the school was the actual "library experience."'s been a few years since this mom has taken her daughter to the library.

So, we went today.  We jumped in the car right after I checked my wallet to be sure I actually still had  a library card.  As we pulled up to the library, I hear from the back seat--"the library is a hotel!"

I just laughed.  My oldest two children would have had no idea what a hotel was and the third child has no idea what a library is.  Our life has sort of done a flip flop in the last five years, hasn't it?!?!

(6 years ago) Sarah 6 years old, Spencer 4 years old
I remember my other two finally realizing what McDonalds was when we were finally out of school and starting Justin's career.  I also remember having the experience a few years ago that I could actually walk out the door and go somewhere with the kids while Justin was at work.  The life with only one car and no money is quite different.

So, now we know what McDonalds is.  We know what it's like to go to the grocery store or run back and forth to the schools in a mini van but no longer know what its like to walk to the park and the library every day.  I treasured those days!

I'm starting to feel very sentimental the last few weeks as I see this school year coming to a close.  My baby is about to enter the summer before full day Kindergarten with us.  Very soon I won't have these quiet school days with her after Spencer and Sarah hop on the bus each morning.

I won't have a little shadow helping with laundry, painting my tile with nail polish, smearing bubbles around the kitchen while we do dishes, walking bare foot to the mail box, dancing around to Disney music, watching cartoons as she sits on the dog, starting a puzzle in each room and not finishing them, copying my yoga moves in her own way, begging for all the treats at the store, climbing in my lap (and on my head for that matter) while I teach piano lessons, swinging on the backyard swing while singing to the world, or hiding in the back corner of the pantry with a mouth full of marshmallows.  I'm really really going to miss this!

Allison--about to be 5 years old

As sad as it is that Allison didn't know what the library even looked like, I think she and I have lived it up the last five years!  It may be different then the little pre-Kindergarten years I lived with Sarah and Spencer but they've been great!  I so love being a mother.  I'm treasuring every moment I have with my little Allison being home with me!

I've had many people ask where my blog posts have been....that's where.  Waiting for another day when me and my Allison won't have these kinds of moments.

Friday, May 2, 2014

Donate to Sarah

May is Prader-Willi Syndrome Awareness Month

Utah Prader-Willi Syndrome Association is our connection to the Prader-Willi World!
They have helped us in so many ways!
We may live in Texas but work closely with them.

They are having a Walk to raise funds in Utah this month.  We want so bad to help and our way to help from here was to set up a "Giving Page" for our girl.

We're asking all of you to please give just a little...this helps Sarah directly.

These funds help her with therapy, clinics, things like iPads for learning, camps, conference for us to learn and keep up with changes in the scientific world and more.

Easier with Awareness

This lovely month of May is Prader-Willi Syndrome Awareness Month!  As I've been thinking about my part in spreading knowledge and fundraising, I've had my own thoughts about how people being aware of Sarah's Syndrome helps us.  So, I'm just going to share those thoughts of mine.

It's easier to be a parent of a child with Prader-Willi Syndrome when....

People like Emilee C. shoot me a quick text before an event at her house where there will be food.  These texts just simply state EXACTLY what will be served.  We are able to tell Sarah ahead of time what she can choose to eat.

Sarah 1 yr. old (drawn by Justin)
Jill W.'s of the world just jump in and start answering the never ending questions (that I've been answering all day long--11 yrs. really) when she's around.

Sarah 2 yrs. old
When the adults that Sarah tries to wrap up into giving her some type of food/treat not only say "talk to your mom" but add a little more help like:  "your food plan doesn't have that on it", "I heard your mom say no", "you already had one--no more", or how about a big old "no!"  (She listens to others better than me)

Sarah 2 1/2 yrs. old
I'm told I have more patience than he does by people like Gilbert J.  (If I hear it enough, somehow it makes me feel patient :)
Sarah 3 yrs. old
Mothers like Tasha B. teach their children how they can be a friend to other children with Special Needs.

Primary Teachers (at church) like Jake M. and Rick W. ask about bringing treats to class before it happens.  Also they help Sarah get along in the class with all those different personalities without involving us as parents....honestly so nice to not have to always be the problem solver.
Sarah 4 yrs. old
School Teachers like Mrs. Brown and Mrs. Merry have figured out how to use Classroom Fairies, Elf on the Shelf and the Easter Bunny to entice, encourage and make Sarah feel loved.

Sarah 5 yrs. old
I sit in my Mom's caregiver class and have another mother tell me she hates shaving her special need girl's legs and armpits as much as I do.

The Suzanne E.'s are willing to give Sarah her shots so I can leave over night with my hubby.
Sarah 6 yrs. old

Bishop Ginn will walk right down in the baptismal font and bend over backwards to make Sarah feel comfortable so her wish of being baptized can come true.

Young girls like Cristine E. will see past the many difference between her and Sarah and just realize they both have challenges, they can still be best of friends!

Sarah 7 yrs. old
People like Lisa T. have their own special need child but dedicate hours and hours to helping and supporting other parents and children across the nation with the same challenge.

Neighbors just smile or laugh when Sarah walks right into their house, yells down the street at them or thinks they speak Spanish even though they really don't.

Girls like Ellie B. are willing to hang out with my cute girl so I can take my other two children in peace to a party full of food and people.
Sarah 8 yrs. old

The bus drivers give you personal cell phone numbers just so you can try and prevent issues that arise in the early mornings.

Sarah 9 yrs. old
The Ben J.'s go one way down the circular halls at church so I can go the other and trap Sarah somehow and finally take her home.

Sarah 10 yrs. old
People like Jenny D. will let me call them and flip out about crazy expectation that a teacher has for this girl of mine.  Oh, and actually have real advice because her daughter has special needs too.

Friends like Holly B. send Sarah home with very large, very beautiful princess puzzles to keep her occupied.
Sarah 11 yrs. old, Spencer 9 yrs. old, Allison 4 yrs. old

Mothers like Jena S. set up play dates with their daughter and Sarah and make it successful by helping her daughter understand special needs

The Becky P.'s hide/put away food items when Sarah comes over.

They are Aware!

I've only mentioned a handful of people in our lives that are aware of us and aware of what Prader-Willi Syndrome is and how they can help.  We are just super grateful that there is support around us always!!!

Here's a little challenge...teach someone else what you the awareness!
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