Her laugh. Its just the greatest. And since all of this really got going its changed. Its gotten stronger and deeper and wider. She just lets it free and I can just see the person making her laugh feels powerful and wonderful. Its a little gift she gives…
I hope I never forget the sound of it…but I am thankful for video. JLK laughing with daddy
Tonight she played with cousins. She adores them. But its interesting that she starts the evening off unsure. She sticks close to me and needs to get settled in before jumping in and playing. Not sure what thats all about but I am glad I can give her a sense of comfort.
Once she was comfortable though she had a great time. Being named the taco queen, laughing and coloring and watching silly videos. Other wise know as being a six year old girl.
After dinner she went to clear her place. Watching her I realized she lacked the strength in her right arm to lift it high enough to get on the counter. I need to lock that in my head for her when we are all back home. That she is unable to do things she has always been able to do like clearing her place and buckling herself in the car. Its hard for her though..she has always been independent. I need to be careful how I handle it though… on one hand I don’t want the boys to get in bad habits….on the other I don’t want them to be mad that I do things for her and not them…Its a fine line to be balancing on. I try to prepare myself for what’s to come…but its hard to have any idea..I never would have thought she would have trouble clearing her place…
She doesn’t look sick, its hard to remember.
Tonight Tony and I talked about how to arrange the seats in the car so all 3 big kids can get themselves in and so I can buckle all 4 in. I am on the go a lot…but I think her mobility challenges will quickly impact us all. I need to be patient with all of us with that.
This morning for treatment I hugged her to sleep like I always do but then I sat in a chair to watch. I wanted to see what happens for her and how she tolerates being put to sleep. Today was a good day since it seemed to go very smoothly. Sitting there looking around that room it struck me how much these memories…during this time…really mean to me. That even though I think I want to forget…I bet I don’t really.
Quite the contrary…I think I will always want to remember. Especially long term goal wise…I want to be able to return to this time and place in our lives and cancer journey…so I can relate to parents at this stage. I texted a friend to come document it for us. To help me remember hopping with her being sure to not touch the blue squares….taking off Daddy’s necklace and nursing baby Charlotte….Her blue mask and the sticker badges we wear everyday with my haggard first night in the hospital picture.
I will miss this time one day…because I will miss her.
Tonight on the drive home my phone rang. A great nephew of my moms friend has a 3yr old with a brain tumor. Brand new to it. Tomorrow they find out prognosis. I told my mom to share my info if they wanted to talk to somebody a few weeks further in the journey to tell them what I wished I knew then…
As soon as I got in the car my phone rang. I hope I was helpful and didn’t just talk too much (as is my nature). That time seems so long ago….before I ever knew the nightmarish combination of letter…DIPG. Its been about 6 weeks. That sounds like such a short time.
But life before my child getting cancer seems like something I dreamt up.