Expectations… are a waste of time and always seem to be wrong. Yet I cannot stop myself from having them.
i expected the last day of radiation to be a celebration. For me it was anything but. Because now we do nothing…At least during treatment I felt like we were fighting, like we were doing something. Now all we can do is just wait for the tumor to start re-growing.
Is it already?
We went bowling to celebrate, a gift from her Santa. I thought it would be perfect ending to such a happy day. Instead I looked at her and felt so angry that we have no more to do to help her…nothing more to try to heal her or get that tumor to shrink. It was the ultimate reminder that there is no cure….not a damn thing we can do. But she had a great time…that should be all that matters.
Have I told you that once it starts to regrow its 1-3 months? She seems so healthy though…how is this real? It cannot be real…I won’t survive if it is.
And right now we are just waiting while at the same time trying to live and experience. To be a complete family. To love and enjoy each other. Not easy with 4 kids 6 and younger…because they are kids and they fight or whine…like they are supposed to. They aren’t made to know our time together is so fleeting. They aren’t supposed to know some kids die young. They don’t know yet and even if they did they couldn’t comprehend it…Our job is to navigate through this trying to do minimal damage along the way.
Everyday of radiation JLK gets to open a little present delivered by a friend of ours. She drops off trinkets to fill little boxes on Sunday and I have them for the week. It was ingenious and really helped her get into the car each morning knowing something would be waiting in her seat for her to open.
On Friday, her final day, I told her it was too big to fit in the box. She would get it later. Walking into the lobby she saw Daddy…She was floating to have him with her. I was grateful to have him with us for the final treatment. I think its good for me to see how it impacts him….watching what had become so common place for us was still so upside down for him. I remember how overwhelming it was to feel her go limp in my arms on that table the first times…but in the end it almost became a comfort for us. Two minutes that were just about us..nobody/nothing else mattered as we embraced and I whispered in her ear.
That night she pulled out her loose tooth. She did it on purpose to have the tooth fairy come again. The next morning when she padded into our room tooth in hand and utter disappointment on her face..we felt terrible. We had let her down…such a simple expectation for a 6yr old to have the tooth fairy visit…something so simple to accomplish. We didn’t. I know it happens all the time and in the scheme of things it shouldn’t matter, but it did. It colored my whole weekend with her. Wanting not to disappoint or let her down (while always feeling like in the biggest way of keeping her safe I have).
Today I found a book in the baby’s room that I had hidden for Jennifer to give to her at Christmas. Its a book of questions…one a day for 3 years. I expected to have 3 yrs to fill it out with her…Now I regret I didn’t give it to her months ago when I bought it. I haven’t decided if I will give it to her or not…
Going out is always a challenge. When I do I am expecting to see somebody I know, or that knows of our daughter. Today I went to the store and had readied myself for it. But when I didn’t I think on some level I was disappointed. All these people walking around in this store have no idea how broken apart my world is. Then on the flip side, when I am with people that all know, I feel vulnerable and watched. I don’t like that.
See there is no winning in this for people around me. Thats why there is no right thing to say…because it all depends on me. The bonus of that is there is also no wrong thing to say either. I do get how scary and hard it is for others to be around me and talk with me. I have thought some about writing a blog of do’s and don’t then I realized I would have to do it every day since this is a storm of emotions and reactions.. I cannot predict me.
Saturday we moved back into our house. I expected it to be a long stressful day with so much left to do after people left. Wrong again. Our friends got everything moved in and around. Including the kitchen back together and even helping sort clothes and switch rooms. We are fortunate to have had helping hands around us constantly. I assumed this day would be all business…it ended up being emotional for me.
Almost immediately as I was trying to sort out the kitchen I opened up the school lunch
section. The area I had stored everything to make her lunches for her first year of school. I held her lunch box in my hand and thought what am I supposed to do with this now? And I ached to be so excited for Christmas break…to be getting 2 weeks respite from the chore of school lunches. Instead I am packing away her tote bag and uniform….trying to figure out what to do with all of it. Luckily one of those helping hands reached out and took it for me…Sometimes its nice not to have to decide.
Unpacking in JLKs new, just her, room I wondered if I would ever pack these clothes up again…Or will I never touch her room after? Will it always be just like it is now? I’m not sure. But I am so glad we moved the boys together and gave her her own room again. It will be so much better for Jonathan. Yesterday he said “Mom I just like to share my room.” And now he always can…he never will look across to the empty bed that should hold his big sister.
I certainly didn’t expect snow in Gilroy when we got home either. Jennifer had an amazing time rolling and jumping and throwing snow in our front yard. The stuff was great and such a special surprise for both of us. I got to sit back and watch Daddy and daughter play and laugh together. The way its supposed to be.
Early today was the same, just a normal day. My kids played and made up games together. We ate a breakfast picnic on the ground and they fought over what show to watch. It was in so many ways perfect.
Tonight was my families annual baggo (corn hole) tournament. 20 teams of adults…too many kids running around to count and then a potluck afterwards. I expected some fun and laughs and a early night since Tony will have to be up at 4am. The first two happened, but not the last. Because Jennifer started to wrestle with my nephew. Normal bigger cousin/smaller cousin wrestling match. I think she gets nervous about her strength and ability. I know its hard for other people to treat her normally and rough house the same safe way they always have. But this was just what she needed…Her laugh and her smile. The confidence she was showing…Her daddy will be tired tomorrow, but it was worth making it a late night. To witness her movement. Her laugh. Her beauty. All effortless. A great memory!
When we finally drug all the kids out to the car Tony noticed how easily she climbed up…How she has seemed a little bit stronger. He asked with hopeful doubt if I had noticed the same thing this weekend…I agreed and he grabbed me and kissed me.
It feels so incredible to see a glimpse into the hopeful…
And this morning when she burst into our room with a two dollar bill in hand and innocent happiness on her face…
I forgot how good this can all feel…how full and warm…
I don’t expect the feeling to last….but like I said expectations are often wrong…maybe I can hold onto this just a bit longer.