Tuesday, August 25, 2009

Make a Wish Barbie

We had a special visit this weekend from 2 very special volunteers from the Make a Wish foundation. They came to personally grant Lily's wish to go to Disney World! They brought balloons, a special Make a wish bag, t-shirt and button and a very special edition Make A Wish Barbie. We were given our itinerary and travel information and will be staying at the amazing Give Kids the World resort for a week of our trip.

As always Phil and I are completely blown away by the generosity of this gift. Travel arrangements, car, lodging and food as well as tickets to the theme parks for a week for six of us- the only questions asked were what are your birthdates(needed for airline purchase) and any special needs? EVERYTHING is taken care of for us. It is amazing. And overwhelming. The only expectation of us is that we have have the time of our lives. It's astounding that for 2 organizations who you rarely ever see soliciting donations, continually give so generously to families like ours. The gift is not prorated on our financial circumstance, no strings attached. It is a gift. Until we were awarded Lily's wish, I had never even heard of Give Kids the World. A resort for kids like her. We wanted her to be healthy enough to really enjoy this. Another part of me fears that since she no longer looks sick, we might feel like we don't belong. Someone asked me once if we had to pay Make a Wish back if she doesn't die. My first thought was - I'd be happy to pay them back 3 times over if she doesn't. But Make A Wish is very clear- these gifts are for any child who has faced a life threatening illness, it does not have to be terminal. I will again point out that life is terminal. So I started researching Make A Wish trips. I wanted to know what to expect. And just like researching Lily's illness, sometime too much of anything can be -too much. I read families' stories and blogs, one woman used the word nightmare 8 times in describing their trip and from what I could tell, the worst part was that it rained while they were there and their "free" accomodations weren't as spacious as they'd have preferred. The paperwork clearly points out that Make A Wish Foundation can not control the weather. Another woman's child began to decline quickly while they were there and had nothing but a positive attitude and praise for their trip. In one QnA, a cast member(Disney employee) when confronted with a tirade by a woman in a wheelchair upset that a Make a Wish child got front of the line priveledges and she did not ,answered; the upside to being a wish child at Disney is that you get front of the line priveledges, the down side is that you have to have cancer. I laughed so hard at this answer that I started to read it to my husband; I was about halfway through when I began sobbing. It has become such a part of our lives, that we forget it is not normal. We're in Cancer purgatory. We see normal which seems like heaven, yet part of us will always be worrying if and when it will be back, tying us to the cancer. I'm looking at this trip as our unfinished business. The birthdays we had to skim over last year, we will celebrate. The times we were too tired to go to the park, or we couldn't go out to eat because Lily was neutrapenic- we will get our chance now. The holidays we were too tired to put in the extra magic. We have been given such a precious gift. The chance to be together. 11 months ago, I laid next to Lily in her bed fearing she would be gone before I was ready to let her go. Now I know that I will never be ready to let her go. I know that if she goes before me, I will never be the same but I will go on as I expect others to go on. We gained perspective on life and love that many don't learn, until it's too late. We get tired, I still yell, we make mistakes. This is what we fought so hard for.

As Lily demanded her special limited edition Barbie be taken out of the box, I didn't flinch. It occurred to me that Barbie dolls are like children. If you leave them in a box, they might be protected and stay clean, but never realize their potential. So much more can be attained by playing with them, loving them. They might get scuffed up and their hair will get tangled and sometimes cut in a strange fashion, but they are still the same doll. And even though it might be nice to let someone else play with them every now and again, you still take them home and tuck them in, loving them more with a fresh perspective.


  1. I am beyond excited for you guys! Are the kids counting down the days? Can the little ones sleep at all knowing this is coming?!

    We need a closeup of Lily's hair--it's obviously coming in! My girls get so excited every time we see a new picture and enjoy watching "Lily with the dimples" hair grow. We rejoice with you in the little milestones as well as the big! Love you guys!

  2. Have an amazing trip! New earrings and all!! All our love,
    The Heiman Family


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)