Monday, April 13, 2009

Cleaning out my head

I am just all over the place about this upcoming Make-a-Wish trip, so 'scuse me whilst I dump all my feelings out on the floor and sort through them.

I feel guilty because Little Warrior is healthy and energetic and hopefully, hopefully, hopefully, the bad stuff is behind us. So why should we be getting an expensive trip?

I feel like maybe I made a wrong choice, letting her get her wish now. Maybe she will be okay, in which case she could get her wish granted in another year or two, when she could remember it.

Nipping all around me is the fear that we really should take the trip right now. In May, it's scan time. And everything could change. And wouldn't I rather she enjoy this while feeling healthy than being sick from chemo?

A real-life friend of mine, a church friend, lost her son years ago to leukemia. I asked about their Wish trip (also to Disney). Oh, she said sadly, he was so sick, he just really couldn't enjoy it. And when they were there, she knew it would be the last time.

I'm apprehensive about being emotional all the time. Heck, that viral video of the people dancing to Do-Re-Mi in Central Station makes me tear up. Walking into this ... a world of amazing volunteers at Give Kids the World, park employees who apparently are very tender with Wish families, watching Little Warrior as her wish comes true ... well, let's just say I'm not packing mascara. We're taking ponchos, ostensibly for the wet rides and in case of rain, but really, it's because of the Niagara Falls sure to flow from my eyes.

Going on the Make-A-Wish trip makes me struggle with my two realities. One reality is that we're leading a very normal life, and even cancer became normal, and it's no longer the thing you think about cancer, where it's all in big neon lights with a swell of dramatic music: "Join us for a very special episode -- CANCER!" It's just life, and you get it, and you deal with it, and you move on.

And the second reality, that I don't often see, thank God, is that it is cancer, and it is big and neon. You're not being overly dramatic, LE ... your 3 year old daughter has had cancer. Twice. This isn't an ear infection. She wasn't getting tubes put in her ears. This was freakin' cancer.

When I was younger, I tended toward the dramatic. Even before I answered The Call, I began deliberately working on cultivating a non-anxious presence, not that I knew to call it that. The truth is, it's easy to blow things way out of proportion, and I try to bring them down, realize it's not that big a deal.

But this kinda is.

So now, I project onto others the critical voices I hear in my head -- "Oh, puhleeeaze. She's doing fine. Get over it! God, why should your family get an all-expense-paid trip to Disney? What about me and my family? You're so lucky!"

And the fact that I realize those voices are ridiculous ... well, this eyes looks with love, this eye looks with judgment, free me, take the sight out of this eye.

When people don't say anything, it's not necessarily because they are critical of you, it could just be that they don't know what to say. It is not necessary for my brain to "fill in the blanks." Because my brain can only speak for me. And right at the moment, it's not even doing a great job at that.

And then there's the practical, that every planner has to face ... but I think I've gotten past that this week, when I took a deep breath, looked up from all the tour guide books around me, the websites I'd been memorizing, the lists I've made, and said out loud, "I am not responsible for making sure each member of my family has an ecstatic time. This will not be a perfect vacation. There isn't such a thing. I will make plans so that everyone can experience one or two things at the top of their lists, and then just let it go. If it rains, it rains. I will trust in the Universe that good stuff will happen."

Lastly, I am overwhelmed with gratitude. Not in a platitudinous way, but literally, overwhelmed with gratitude. Total strangers, doing amazing acts of love, for us. Handmaking dresses. Sending money to Make-A-Wish and Give Kids the World, so that families like us can have this adventure. Volunteering their time to serve. Ministering to us.

I am overwhelmed with gratitude. And that is a cross I'm willing to bear. Total strangers, demonstrating love. I am surrounded by teachers. And so I may not have answers to all the rest of my questions, and my feelings of guilt, and my guilt at feeling guilt, because it's not about me, and all the swirling inside as my brain tries to process too much information. But I can commit myself to learning. I can commit myself to learning how to love with big open arms. Limitless undying love. And I can commit myself to being the one to give the love, when it's my turn.

4 comments:

ms. kitty said...

Sometimes your posts just take my breath away, LE. This is one of them.

Christine Robinson said...

I always thought that make-a-wish was a celebration and a family bonding experience after all families with sick kids go through. It's as much for sibs as the patient. The time to take it is exactly when everybody is well and hopeful, and I hope you have a very, very wonderful time!

I know you'll bear your cross of gratitude well.

Jess said...

Oh, sweetie. I won't say I know exactly how that inner monologue goes, not being you, but I can empathize. I do know that it can be really, really hard to get the unhelpful voices in your head to just. shut. up. every once in awhile.

On the guilt-gratitude over the trip thing -- you already know this, but sometimes it's good for other people to say it, right? You and your family absolutely deserve this trip just as much as anyone else. Make A Wish exists for this purpose, and lots of people donate money, intentionally, for exactly this trip for your daughter and her favorite people to enjoy together, because you all deserve it.

And not because you "earned" it, not compensation, not hardly. This is about joy, and celebration, and love, and that beautiful baby girl's radiant smile.

And thank you again for sharing all of these things with us, because the stories you choose to share are powerful, and far-reaching.

Elizabeth said...

You're going on this trip at exactly the right time and for the right reasons. Same reason my sons saw their grandma while she was still healthy. So that they had a great time with the grandma they'd known and loved and would remember.

This gift you received - the gratitude you feel is what you should pay attention to. You're not grateful because you "deserved" this trip. You're grateful - like you say - for the love that has been demonstrated and showered upon you. And you should have no guilt, because you know that you will pass this gift forward, which is the best thanks and gratitude you can give.