Tuesday, October 7, 2008
Still Recovering from our Make A Wish Trip
"The Tightrope Walker" by Jean-Louis Forain
It's been two weeks since our Make A Wish adventure and Queen Teen is still smiling from the joy and excitement of meeting Laurie Berkner. She and I put the photos in the album Make A Wish gave her and we talked about the trip. She giggled as she looked at the pictures of Laurie, especially the one I took during the concert when Laurie had a "pig on her head."
I wasn't prepared for the emotional hurricane the trip created two days after our return, though. The exhaustion from traveling and caring for Queen Teen alone in a hotel for four days hit me hard, followed immediately by the blues so deep I couldn't stop crying. Make A Wish is a marvelous gift, but I suddenly realized I didn't want it.
For over ten years I've understood that Queen Teen's yet-to-be-named condition is degenerative, but I've avoided the idea that it could kill her. We focus on the here and now. The future is unknown because her condition is unknown. Some people say not knowing the outcome is harder, but for me, I like not knowing because that leaves the future open. Anything is possible, including Queen Teen's degeneration plateauing with no further damage to her cerebellum. Her neurologist explained that could happen and he's admitted that he really doesn't know what the degeneration will mean in the long run. Fine, then lets just deal with today and live with joy and determination. I refuse to mourn my child while she's standing right next to me.
Qualifying for Make A Wish shattered my healthy denial, especially when I saw the look on people's faces when I told them Queen Teen's wish was being granted. Everyone looked at me with a frozen, startled smile as I explained her Make A Wish dream. They wanted to be happy for us, but at the same time I could see the questions in their eyes. Is Queen Teen dying? I had no idea! Why didn't you tell me?
Now I'm having to tell myself the same thing I wanted to tell them. No, Queen Teen isn't dying, but she is at risk. We don't know what will happen. So please, can we just focus on the FUN part of this trip?
I wonder how many other parents have the same reaction I did about Make A Wish? The gift is incredible and life-affirming, while at the same time frightening. Perhaps Make A Wish should include that in the info packets they give to the families before the trip. Now don't be surprised if you feel overwhelming grief at the same time you are excited for your child.
I'm feeling more centered and calmer now, but it took several days and a call to my therapist. I see him whenever I feel like I've lost my balance on this tightrope called raising a special needs child. Sometimes we all need someone to steady us so we can move forward, one cautious step at a time.