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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.

Click here to see her Giving Page and donate

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 know....help the awareness!

"Special Needs" Conversations with my Allison

We were walking around Target a couple of days ago and Allison just stopped.  She was watching a little boy with severe physical disabilities.  He was wheelchair bound and couldn't move or speak.

In the sweetest little voice she asked me "what happened to him?"

I knelt down next to her right there in the aisle and said "you know how Sarah was born with Prader-Willi syndrome and we call it special needs sometimes?  Well, he has special needs too.  His body was born that way.  That's his challenge that God gave him."

That's all the explanation she needed for the moment because she said ok and just walked away.

About an hour later, we found ourselves at the park.  She was swinging on a JennSwing and after a minute she said "this is a new swing.  I've never seen one like this before."

I went on to explain to her that "remember when you saw that boy in Target?  His mommy could bring him to this park and put him in that swing.  He wouldn't be able to swing on one of the other swings.  It's a swing made for kids with special needs."  I even told her about "when Sarah was her age that she had just finally learned how to sit up on a regular swing.  When she was two and three years old she had to sit in a special needs swing too."

She sat there and then finally said "It's sad that I have a body and a brain that works right."

I remember having these exact same conversations with Spencer.  He was about that same age.  That age of Kindergarten seems to bring these questions of noticing the differences in others.

When Sarah was in Kindergarten, that was the first year that we were asked to go into her class and talk to the children about why Sarah "talked different, walked different, asked the same questions over and over and over again, why she wanted to eat all the time."

I often think that one of the huge blessings and learning experiences we gain from Sarah is being able to accept the differences in everyone.  Our children are so open to others and their physical disabilities.

Allison was at Walmart with me today and a sweet older woman drove past us in an electric wheelchair. Allison said right out loud "she has special needs, Mom!"  The people around us smiled and asked how old she was.  One lady commented "what a special child to realize that and not be rude and stare or point."

I agree.  She is a special little girl.  I know that Allison was sent to our family for specific reasons and one of them was to be Sarah's sister.  She idolizes her big sister and wants to be just like Sarah.  Allison will be so much more empathetic and understanding of others has she lives a life alongside her sister.

Not only Sarah, Spencer and Allison are learning, but Justin and I have also commented many times on how we feel so comfortable around others with physical disabilities or handicaps.  We both felt a little nervous and unsure at one point in our lives but this whole world has been opened to all of us.

Bottom line, we are all God's children.  We were all sent with different challenges.  Some you can see better than others, some are physical, some mental, some spiritual and some just hard to see but you know they are there somewhere.  I absolutely know that because of The Atonement of our Savior Jesus Christ everyone of these challenges can be overcome and perfected.  I know my Sarah will have a perfect mind and perfect body in the resurrection.  I so look forward to that day that I can stand in front of her and have a heart to heart conversation.

How blessed we are to have our special Sarah.  We wouldn't trade even the hard times for anything in the world.  I especially love that she helps us teach our other two children how to love unconditionally and to solidify that we are all important.  That they can overcome any and every challenge that they are or will face.

If you don't walk as most people do,
Some people walk away from you,
But I won't! I won't!
If you don't talk as most people do,
Some people talk and laugh at you,
But I won't! I won't!
I'll walk with you. I'll talk with you.
That's how I'll show my love for you.
Jesus walked away from none.
He gave his love to ev'ryone.
So I will! I will!
Jesus blessed all he could see,
Then turned and said, "Come, follow me."
And I will! I will!
I will! I will!
I'll walk with you. I'll talk with you.
That's how I'll show my love for you.
(Primary Song Book pg.140)

She Writes! It's a Miracle!

One of the most challenging things about being a parent of a child with special needs is definitely communication.  As the years have passed by,  I've wished and prayed that I could understand the thoughts that my sweet Sarah has.  I want so bad to know what is going on in her head.  The physical vibes or words out of her mouth are just not quite like my other two children.

It absolutely floors me when I sit and watch her put puzzles together.  Get this...she never uses the picture...not kidding.  She actually hates to have the picture even by her.  It shows me that her brain just works quite a bit different than my own or other children around us.

Just recently we have figured out that a "feelings journal" or "letter writing" does wonders for her and us.  When things are exploding or when she's frustrated we have her sit down and write to us.  It's taken us 11 years but between school, therapy, and hours of work at home we have helped her learn to write.  Check out her spelling, her penmanship and look how she's finally able to tell me what is going on in her head...

Sarah came running in from the bus the other day and before she even unloaded her back pack, jacket and such she shoved this in my hands.  It hit me!  All the work and all the prayers...it pays off!  It really does give me that wish of knowing her desires/her thoughts.

So much of this list of thoughts makes me think how much she's just like me!!!  Seriously.  It's a flood of to do list items that are over powering her and she has to have them all done this second!  Cracks me up!

So, if you have a special needs child (and you feel like I have for years...the crying, emotions or physical or nonverbal ques are just not the same as the other children around you) know that it will come.  In some way or another, whether it's through hard work to get her to write like me, a bunch of little miracles or a big old giant miracle from heaven,  it will happen!  Hang in there! Pray, keep trying and I know miracles will happen!!!  I have felt it.  I have seen it with my own to eyes.

It wasn't very many years ago when I would sit and cry because I would sit in front of my daughter and ask her questions and get silence back.  I would read her story after story and ask what she heard and get a shoulder shrug.  I would stand there feeling helpless as a little girl would scream and cry at me while stomping her feet because she couldn't get through to me what she wanted me to know.

We still have many moments of terrible communication but I see this writing as such a beautiful miracle!  I treasure these words!

Red Yellow Green at our House

So, Sarah's back.  Our embraces were wonderful!  Her suitcase is unpacked, laundry is done and I even introduced her to our little project I got together while she was gone.

For a long time we have attempted parts of a Diet plan that has been suggested for Prader-Willi.  We recently attended a conference in Utah that inspired us to really take a look at what we are doing in our home and see if we can take care of anxiety that has built up for Sarah and us.

We decided that one of our issues is our complete control of what she eats.  Of course that's important but we think the way we go about it does not permit for her to have a say or feel some control.  Well, it was time to completely embrace this Red Yellow Green Diet from the Ontario Prader-Willi Syndrome Association and see if it will help solve our issue.  (you can order this same book if you click here)

So, look what I did to our pantry door!  Justin and I were beginning to think this was all a little nutty when I got it all hung up but the more we studied and as each day has gone by it's become quite simple to us...it's working!  Of course it hasn't been very long; I'll update you in a few months and let you know what we think then but as of now it's going pretty well.  

Let me explain.  The green foods are "Go Foods."  She can have one each time we sit down eat if she wants.  They are basically the no calorie foods, or low calorie vegetables.

The yellow foods are "Caution Foods."  These are foods we all need for our bodies to be healthy.  She just needs to be careful with amounts to maintain a healthy weight.

The red foods are "Stop Foods."  She can one a week.  They are basically dessert, high fat meats, or really high calorie foods.  

So, the pictures posted on our pantry help Sarah to know examples of what she can eat and how much of each food makes up a serving.

Then she uses this chart below.

Each night before bedtime, while I'm working on the dishes, Sarah picks out what she will eat for each meal the next day.  I give her options of what we can have for dinner and from there we start adding servings that she can have for each food group.  

I absolutely love that Spencer and Allison are picking up all this knowledge right along with us.  It's opened a rather healthy dialogue between us of why Sarah's body is different then ours.  It's helping us all be a little healthier.  It's motivating me to plan my meals a little better--saving $, time and stress.  It feels like it's given Justin and I permission to be strict with her diet because someone else says so; we don't feel like the bad guy constantly.  Sarah feels like she's eating more then before.  She just fine when the rest of us our eating what we need or want because she's got her "Prader-Willi Plan" as she calls it.

I know that when we walk into school meetings this fall that we will feel a little more armed with how to deal with food at school.  When I drop her off somewhere I just let her kindly know that if she chooses to eat something while she's there that is not on her plan then we will just take away calories from her plan.  (Of course the adult that is in charge of her knows before hand that she's not supposed to eat anything too.) 

Sarah still asks the questions about food but all we have to say is "it's not on your plan you made."  She answers back with an "okay" almost every time!  I can not believe it!  It's so refreshing! Of course our little learning curve is quite steep right now but I'm okay with that when I know we are preparing this for years down the road.

I must say that this is just part of adjusting our traditions and the way we do things to our "normal" if there is such a thing.  I'm pretty sure other people don't understand this one bit, so among my thoughts to myself that "I just can't care what others think" I smile thinking that "if Sarah lived under their roof day in and day out" they would come up with some of these tricky things too.

Minus Sarah This Week

Since the moment my husband and I finally embraced the fact that our oldest daughter, Sarah, would not just "grow out" of her health issues and that she has "Prader-Willi Syndrome" she is "mentally disabled" or has "special needs" we have tried to create a balance in our home.  We realize we can't raise her on our own and that it takes extra care and attention to our marriage and our other children.  

I'll just say right now that it's a battle.  It's an hour to hour, day to day battle to keep our faith center.  To keep our perspective eternal.  To nurture and strengthen our children with the right mind and the right spirit.  It's not easy to consider all the feelings of each individual in our home.

One major answer to our prayers is "Lions Camp"

 

Sarah came home from a week at this camp last summer with renewed self esteem, more independence, a absolute thrill for life and could not wait to go back again.  We could see how good it was for us to have one on one time with our other two children.  It brought us all closer and taught us a lot about ourselves when Sarah is not with us.

I feel so guilty even saying we enjoyed her not being here.  How could a mother say or even think that?  I tell you that I cling to the fact that I have to focus on my needs, my husbands needs and the needs of my other children though.  Just as I have to give my all to Sarah, I have to give to the rest of us or there will be no family to work for at all.

Well, we just dropped her off again this week.  We decided that one of the ways to keep our family balanced like mentioned above was to try a vacation this time around.  Not just sit at home like normal while she was gone.

That is exactly what we did, my friends.  We got a hotel room and went to Sea World for 2 days.  We ate all we wanted, whenever we wanted. We talked and visited and played and relaxed!  We all found the vacation we needed!  It is so neat to see that Spencer has things to say constantly and that Allison can be even-tempered and not fight for attention every moment of the day.  Honestly a whole new side of our family is seen and felt when Sarah is away.

 

My mind slips to my daughter often.  I start to feel guilt creep in and then I picture her marching through camp and pushing us out of her bunk house so she could begin her week.  I know she is right where she wants to be.  I just love this girl with all my heart and soul.  I'm privileged to be her mother!  I can't imagine life without her so it is hard to sort of subtract her for a week.

Remember that you are preparing for Eternity.  

Your child's disability is temporary.  

The spirit is not disabled.