My mom has mentioned several times how happy she is that we took my daughter to Walt Disney World on vacation a few days before the brain tumor killed her. She has stated over and over how grateful she is for those memories. She reminisces about my daughter kissing her on the cheek, something she did for the first and last time on that trip. My daughter would let loved ones kiss her on her cheek, but she only ever kissed me on the cheek. I am glad that those memories are comforting for my mom. When a senseless tragedy strikes, you feel lucky to cling to anything that helps you sleep at night.
Intellectually, I know the pediatric neurologist said that nothing could have kept the malignant brain tumor from killing my daughter. Still, I can’t help thinking about that vacation in terms of what signs we might have missed and what discomfort she might have been experiencing. I keep reading on medical websites about the headaches, nausea, and other symptoms and thinking, My poor baby. On the trip, she had a hard time regulating her diet and overate, but all the adults had the same problem, so we didn’t think of it as a sign of anything. We joked that calories don’t count on vacation.
At Walt Disney World, I noticed that there were no kids wearing “Make a Wish” T-shirts. Historically, children with terminal illnesses on trips organized by the Make a Wish Foundation would be at the front of all the lines wearing “Make a Wish” T-shirts. At the time, I speculated that they probably just give those families unlimited fast passes now, which allow them to cut into lines. While waiting to meet a princess, I wondered what it would be like to take your child on vacation knowing that it would be your last trip together. It seemed dreadfully hard but nothing like the pain of not having the child anymore. I thought, How could a person live through that? I still don’t know.
My feet still have the tan lines of my sandals from that trip. I wish they wouldn’t fade.
Rachelle, we have never met but I know you from getting Otis. My son received Lucie about 6 months before Constance was placed with Otis. I remember watching the ASDA Facebook posts during your ASDA training thinking how blessed you will be getting Otis for your girl! I just got word from the ASDA family group about Constance and I am choking in tears trying not to sob while reading these posts. I cannot imagine the pain! I cannot imagine having to move on with life without your girl! I am so sorry and there are no words. I am grieving for you and your pain.
Reading this post about WDW reminded me of when we went this past December.…
From https://twitter.com/RachelleJervis/status/1008654112173559808:
Day 13 is at https://www.wantmybabyback.com/blog/day-13
Paula, Thank you for sharing that. I wish you and your son had a long life of memories together.
My son had finally gotten to an age (5) where we had started talking about things like Walt Disney World and other fun places. We never made it to any of them - he was gone at 5-1/2 years old. And because I was such a psychological disaster after he died, my older son (11-1/2 at the time), never got to experience those things either. I have so, so many regrets.