Make -A- Wish

Over a year ago, a friend of mine told me I should submit Emylie's name to Make-A-Wish. I turned her name in and then didn't hear back. At the end of the year a few friends had asked if we had heard anything. When I said we hadn't, they all suggested following up because that wasn't normal. A few weeks later I called to find out they were missing something from the doctor. Once they got that taken care of, we got the call...

Emylie was approved as a "Wish Kid" and we were now a "Wish Family."

I was so excited for Emylie. I knew this meant that she would get to make her wish. That she would get to be part of something amazing. Because of Emylie, our family would get to be part of something amazing too.

The first week of January, Emylie and our family got to meet her wish granters, two amazing ladies. They visited with all of us, getting to know Emylie and what she likes and enjoys. It wasn't too surprising to us that it would have something to do with Minnie and Mickey. She is a BIG fan! Her little plush Minnie sleeps by her side. Emylie gives her hugs, changes her diaper and gives her a binky when Minnie cries. Minnie is Emylie's friend. I have even caught her talking to Minnie.

After a series of questions her wish was made known...with a simple and sweet nod of her head and a quiet yes.
She wanted to meet Mickey, Minnie and Donald Duck!

A couple weeks later our family was asked to visit Emylie's school at a certain time on Tuesday the 17th. Curious of coarse we all went. Emylie had a little emotional moment Tuesday morning before school. I kept thinking...NOT today. I was sure something awesome was going happen and didn't want her to be having an off day. A little extra emotion usually doesn't hurt, but Emylie can be very sensitive to change and new people so a little extra emotion might just make for an overwhelming situation. At the same time, I was thankful she was healthy and and able to go to school.

Shortly after school started a couple guests came into the classroom...

Kimberly and Amanda (Emylie's wish granters)

to announce...

HOLY COW!
Mickey, Minnie and Donald - get ready! My little girl is coming to meet you!!!

Emylie had fun with the balloons!

To my little Emylie. In all my childhood dreams, I did not dream the life I currently live. Because of you, my life is enriched and has more meaning and purpose. I love you beyond description. You make me a better person. You enlighten my days. You make me laugh. You make me smile and bring me an immeasurable amount of joy. I am so grateful for you. I am grateful that this trip is "all about YOU!" because you deserve it!!! You have made my dreams come true in a way I never dreamed! - Thank you!

A Windy Day...and a technology dependent child...

Yesterday was a crazy day. Wind gusts up to 90 mph and up to 102 mph just south of us. Shingles flying around. 60-foot pine trees uprooted. Trees snapped, branches broken. Fences of all kinds broken. Garbage flying around. Christmas decorations destroyed. Power outages.

I was worried throughout the day about the power going out. Praying that it wouldn't. The power at my mom's work went out and they were told to plan up to 72 hours before power would be restored.

As a kid a power outage was exciting and adventurous. Even as an adult power outages brought adventure. Other than as a grown up there is the worry of the contents of the refrigerator and freezer and freezing pipes...

Having a child who depends on electricity for life creates a very different adventure when the power goes out. This is not a fun adventure but one full of stomach twisting worry.

Most of Emylie's equipment has battery life. When the batteries are dead we then have to find alternatives....a generator with an extension cord and a way to divert the exhaust fumes from coming into the house or take her to a place with power - a kind neighbor has part of their home connected to a generator so when the power goes out that portion of their house still runs as if nothing has happened. (wouldn't that be AWESOME!) Thankfully when the power went out at our house it only was out for an hour and we didn't have to get to creative with our options. It was a huge blessing to have such a short time without power when others around us were out for much longer. I am also grateful for our wonderful neighbors who checked on us and offered there home to our family if we needed a place to go - thank you!

Concert for Emylie (31 of 31)

Today was the benefit concert for Emylie.
It was beautifully put together and the music and poetry were very entertaining.
Yodelling, fun cowboy poetry (I learned a few things about a cowboy), great songs, and a raffle and silent auction.

I enjoyed watching Emylie enjoy the music.

THANK YOU Karen, Rayne and Richard and all the others who helped make it possible.

THANK YOU to all of you who came out in the snowy weather.

My heart is full and I can't seem to put into words how it feels to see people come together to help my little girl and our family.

Thank you seems so inadequate.

(I am having trouble uploading the pictures...)

Color to White in seconds....(30 of 31)

This may be of little interest to you but I am feeling like I am having a difficult time coming up with #30 post. So...I am going to talk about the weather!

Early this evening I mowed the lawn.

It was cool outside but not bad.

Towards the end of my mowing I removed my jacket.

Cleaned up.

Ate dinner.

Looked out to see rain.

Got the kids in bed.

Opened the door when the nurse arrived only to see...

SNOW!!!

Holy Guacamole - it is crazy how fast the weather can change around here.

MOMS study (29 of 31)

During my pregnancy with Emylie I had a blood test done at 16 weeks that screened for a few different disorders. When the test came back abnormal the next step was to have an ultrasound done to see if the test was correct and if so for what disorder or if everything was okay.

The first of 2 ultrasounds was somewhat inconclusive. We had to wait 2 more weeks for the second ultrasound which showed the opening in Emylie's lower back and her diagnosis of Spina Bifida was given. At this time the radiologist told me to look up the MOMS study as not only a resource but also something we should consider. With more research we didn't feel like it was something we should participate in (for varying reasons), but I find it very interesting and amazing to think of the things that can be done. If you want check it out http://www.spinabifidamoms.com/english/overview.html

What do you want to know? (28of31)

Do you ever find yourself not asking a question for fear of offending someone?

Do you want to know how something works?

Do you want to know how someone feels?

Do you want to look at someone because there is something different about them but then feel guilty for looking because they have something different about them?

Since Emylie's birth, I have been more aware of others around me. And when I see someone with differences, I want to ask questions, but don't want to offend them and sometimes don't know how. I think it is normal to be curious. I don't think all looks are meant to be negative, perhaps just inquisitive. There are some that I have felt are more approachable and so I ask. I want people to be able to ask me questions. So if you have a question, let me know.

Spina Bifida website....(27 of 31)

A great resource:
Utah Spina Bifida Intermountain Support Group
http://utahspinabifida.org/