This time last year Tony and I were on the best trip of our lives. A trip to surprise trip to Disneyland with just Jennfier and baby Charlotte. She was 7 months old so totally easy and flexible. The trip was all about Jennifer, what she wanted to do and when she wanted to do it.
It was perfect.
We had so much fun. She had so much fun. She was so happy to be all done with radiation. We thought this was just the start of a honeymoon period most kids with DIPG get.. a time to make memories and pack a lifetime in. We were so lucky to get gifted two incredible days there. One with a tour guide taking us through the crowded park and the other day with passes for her favorite rides. We will forever be grateful for the generosity that allowed us to do every single thing she wanted. Easily.
I wonder so much how she was feeling on this trip. Did she know? Could she tell that the cancer had grown? The last morning we did Goofys kitchen. She was so excited to meet the characters. To be able to eat all the great gluten free goodies they have there. But then suddenly she told me she was going to get sick. I picked her up and tried to run her to the bathroom. We didn’t make it. She threw up in the lobby. Right where people line up to go into the restaurant. She got both of us… and the ground. I felt so terrible for her. She tried so hard to hold it in.. to force me to put her down so it didn’t get on me.
A woman came into the bathroom to clean her shoe.. made some snide comment that I served right back to her. I think Jennifer was actually really happy with me thinking back on it. I think she was grateful in that moment that it never phased me… her throwing up or peoples reactions to any of it. And we had a good laugh about it.
Just like Jennifer, she went right back to the table and didn’t complain that she had missed the only princess at that meal. But just like Libby.. I went and found a manager and made sure she was visited by each and every character.
I love that spirit of hers. That bright shining that came from deep within her. Always. She always had that shine to her.
We really thought it was just after effects of radiation that made her sick on the trip. I really never thought.. never imagined she wouldn’t get a honeymoon period. Looking back now I see it was such huge denial.
We laughed so much over those few days together. We all fell in love with each other a little bit more. She got to see the parade from the best seats in the place and she got to meet all the princesses and then be made into one herself.
oh i miss you so much jennifer lynn.
so so so much.
I told her on that trip. That we would take the other kids too one day. A special trip for each of them when they turned 6 or 7. She was so pleased with the idea that they would get the time like she was.. I meant it to. Well I did then at least. I cannot imagine Disneyland without our first princess. .. I don’t know if we will ever be able to go back.
So today after naps we hopped in the car and headed to the local amusement park which is open for special night hours right now. For them because of her. We split up some so each boy could be in charge. Once I took Nicholas alone and then we swapped Charlotte so Tony could have solo time with Jonathan. It was good.
We got in line for the train ride.. . That line was just like my life is now.. and will be forever.
Waiting in a horrifically long line. Creeping forward painstakingly slowly. All I could do was try to make the wait a little fun. Make some memories and some jokes.. all while counting down until it was my turn to finally board that train.
The final wait. The last bit before my turn on the train came was more relaxed.. because I knew the end was near .. I just really didn’t worry too much about the wait since I knew it would be ending soon.
Then it was time. I boarded that train. And the time on the ride went so much faster than it felt like would. Waiting in line the space between pick ups seemed to drag on. But it was different when I was the one on the ride.. Being the one on the train made time move just a little bit different.
here i am jennifer
waiting in the longest of lines
the one to see you again
i hope the ride is so fast
i hope the colors are so beautiful where you are
i’m trying baby
to make the most of my time here in line