Monday, February 1, 2010

Motivational Monday

"I wish to be a Princess, and to see the castle!" Rachel said as her eyes lit up up with excitement.

Lora and Kathy talked to Rachel about where the castle was, and how you need an airplane to get there. The other kids circled around Rachel, like hovering vultures, waiting for a meal.

The wish granters needed to hear Rachel say it....."I WISH TO GO TO DISNEYWORLD!!" She screamed. Our awesome wish granters then talked to us about the technical side of all this and handed me some paperwork, as the kids opened up some gifts.

I was already soggy with tears....I can't imagine how the rest of this wish is going to go.

I sat and watched as the kids tore into their gifts. After all the birthdays and just having Christmas, this was sure a treat! I was so amazed at the thoughtfulness in picking these gifts out...they were perfect!

Rachel opened up a official Make-a-wish Barbie doll, Brooklyn got a Little People Airplane and Riker got a read-a-loud story book. The older kids got gift cards for Target...which we will save to buy goodies for the plane ride!

The wish granters (Lora and Kathy) and I visited as the kids talked about the gifts and about the upcoming trip.

This was an awesome time to help someone understand Neurofibromatosis and its affect on our family. NF doesn't just affect those diagnosed with this life-long monster....Everyone in the family feels the pain from it.

I hate knowing knowing that there is nothing I can do to make my kids better. No cure, no treatments. The progression of Neurofibromatosis, is steady and cruel and I hate every second of it.

But in that moment, while telling Kathy and Lora all about NF, I looked over at my children and saw them happy. They didn't care about NF. In fact, they never really do. I am the one who stresses..I am the one who worries.

So even while NF may take part or all of my daughters sight, cause tumors to form in and out of her tiny body, cause learning disabilities and limit her motor abilities-SHE is the one who is teaching me to go beyond the diagnoses and see past it.

Lora and I have been in contact since her visit with us, and our trip to Disney World is set. March 22nd, out family of 8 will venture off to Florida to stay in "Give Kids the World" resort. We will visit theme parks and have fun...taking NF and squashing it, for a week.
This is the very first vacation for our family, so we are very excited. Make-A-Wish has already blessed my family so much, I can't imagine what is in store for us.

1 comment:

  1. How exciting! Matt externed there, and i visited him for a week and it was seriously the happiest week. I had the best time and I hope they will too!