Make A Wish
I spoke with someone from Make A Wish today. She’s a volunteer who lives in the area and she called to make an appointment to come over and meet Ana. I’m glad the process is moving forward, but I’m feeling ambivalent and more than a little sad about it. It sort of feels like the final confirmation that Ana is a seriously ill child and I guess it’s still hard for me to grasp that reality.
Ana’s got two big wishes. One of them is a trip to Hawaii and the other is to sing on Glee. I’m guessing the singing on Glee thing is a long shot, but she needs to come up with two wishes so what the hell? She said she’d ask if Emily could sing on Glee too. Now THAT would my my wish!
Ana told me she was really happy to have Christmas at home, but she’s also really worried that she’s going to be on the waiting list for a long time. I’m worried about that too. Jim mentioned that Dr. Martinez (the pediatric hepatologist) suggested that we revisit the living donor option if we don’t get THE CALL by Ana’s next appointment, which is January 9th.
I meant to call the living donor team today to restart the process – meaning I will need to go into the city and meet with a bunch of doctors and get a bunch of tests. I didn’t do it though. I’m scared and anxious. It’s not that I don’t want to do this for Ana – I totally do – I’ve just never had surgery and I have no idea what to expect. What if something awful happens and I die when Ana needs me most? Would she ever forgive herself? What the hell am I even talking about? My mind keeps going to these dark places.
Sometimes this whole process seems completely endless. No matter how much she assures me she feels fine, I know she’s struggling. She went ice skating with her friend Lauryn the other day and she didn’t last more than about 45 minutes. Well, part of the problem is her skates are too small (we only got ONE season out of those suckers). But I know she was struggling on the ice.
Ana also loves being in her room. She told me it’s her haven. After weeks and weeks in and out of the hospital, she truly appreciates having her own things, her own space, her own privacy (and of course the cat). Jim got her a gorgeous stereo for Christmas and she’s been in there listening to music for hours. I love that. After all she’s been through, she’s still just a typical tween.