Saturday, January 7, 2012

The Cost of a Wish

It has been almost an entire month since I've blogged here. A month. I'd like to say that is because I have been way too busy to blog and when I get a couple of minutes to myself, I play Angry Birds. While that is all very true, it's not why I'm not blogging. (I've already beaten all the Angry Birds levels and have been cleaning it up to get 3 stars on every level.)

I haven't been blogging because I don't have a lot of positive to say and I hate that this blog has become so negative. Unfortunately, my lack of blogging has also made me feel without a way to get "it" out. So, today I blog. I blog for me.

Since we last met, a lot of things have happened. I was named one of the 20 up and coming attorneys in the state of Michigan. The Dancing Queen started immunoglobulin therapy, which is an additional 2.5+ hours each week to give, but is helping her so we're happy. We took the Dancing Queen's wish trip to Florida. There was the holidays. And I've been crazy busy at work.

On the surface, all of these are wonderful things (yes, even being busy at work). And I posted about the big event, the wish, on DQ's carepage and elsewhere, had my happy moment, and now I'm left with what it all really means.

The biggest weight on my mind has been the wish trip. Don't get me wrong. It was amazing and wonderful. I've copied my positive update in the post below, so people don't think I'm not grateful, that it wasn't the trip of a lifetime, that I didn't make memories that will last forever. I did. But, I also had moments that will haunt me.

When DQ was granted her wish, I was so happy for her. I wanted her to have something positive in her life, something to look forward to. I knew why she was nominated and why she was granted. I was the one who contacted Make A Wish afterall. And I specifically contacted them when I did because I didn't know if DQ would be around to make a wish as an older child. I did this. I knew it. And in the year that we planned this trip, I never once felt that this wish trip was anything more than a wonderful experience for my sweet daughter who had gone through hell her entire life.

And yet . . .

The week before we left, we received a check in the mail to cover baggage costs on the flights, gas for the rental car, meals in the parks, and souvenirs for the kids.  Make a Wish had thought of everything so we could have a true experience without worry. At that moment, it started to hit me. This was something beyond nice being done for us. Total strangers were giving us the trip of a lifetime, were taking care of us completely. I felt totally guilty.  We didn't deserve this.

Then, the limo picked us up. We were greeted at the Orlando airport by a volunteer from Give Kids the World. When we got to the village, everything was taken care of for us. There were gifts for the kids, snacks. We were handed thousands of dollars worth of tickets to theme parks.  And at the parks, we got to cut in line for rides or to meet characters. We were first, no matter when we arrived.  The guilt I felt was enormous.

But nobody said anything. Nobody gave us dirty looks. People clapped when DQ hugged Lightening, even though she had cut in front of several dozen kids to meet him a second time. People took one look at DQ and her magic button and stopped to talk to us and make sure we were having a wonderful vacation. Everyone was so very nice.

And in the middle of the first day, it hit me like a ton of bricks: the reason for all of this was because my precious daughter has several life-threatening illnesses. It became more real for me than ever in that moment. I no longer felt guilty, but angry that she had to be so sick to be treated so well. And, in my mind, I challenged someone to complain about our special treatment. I wanted to yell "The price we paid for this royal treatment is our daughter's life!"

And at the same time, I felt incredibly sad. I so wanted to trade it all back. I wanted to stand in line for hours, hearing my kids ask hundreds of times "is it our turn yet?" But, we were on a wish trip because nobody can fix my daughter.

And not a sole complained the entire time we were on the trip. They all knew the price we had paid. I didn't need to scream it at them. They saw it on DQ's face, especially by the end of the week, when DQ looked obviously ill.  Perfect strangers could tell DQ was ill. And not just ill, but fighting for her life. And realizing that truth emotionally, for me, was harder than the guilt.

So, while I can look back and smile at the things we did and cry tears of joy at the memories we created, each time I look at photographs of the specific day the Dancing Queen's wish came true, the first thing I see is a swollen, purple little girl, whose heart was overworked and lungs couldn't keep her oxygenated. And I then I am overwhelmed with the emotions from that day: extreme happiness mixed with utter despair. Why did it have to be her!

(Perhaps you can't tell from this picture, but DQ's lips were purple/blue, her fingers were purple past her first knuckel, and her cheeks are so red because they were stretched out beyond normal due to swelling in her face from blood backing up.)

I will be forever grateful for the gift that was given to our family. We had a week together, without work, without hospitals or doctors, without most of the worries of our everyday lives. We made memories that will make me smile for the rest of my life, but along with that, I will never forget how it made me feel to realize how the rest of the world sees my baby.


  1. Glad you came back off blog hiatus to share with us.

    Even when you share the trials of DQ's illness, this does not seem like a negative blog. I always feel like I am hearing from another mom who just happens to have more serious things to worry about than the rest of us. It's been nice getting to "know" you and your family.

    And, although it's a sad reason to get granted a wish trip, the bottom line is that DQ and the rest of you had a wonderful experience and saw how well people can treat each other. No matter what the future, that is yours and DQ's to keep.

    Of course, I cannot let go unmentioned your accomplishment - congratulations on being named on the Top 20 up and coming attorneys! Doubly impressive since you have so many other things occupying your time and thoughts. Way to go!


  2. I just found your blog, and my son has a chd too - I'm looking forward to reading more and I'm glad you guys got to have a wonderful trip, even if it was hard (which I totally understand!)


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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