I miss seeing her in new ways.. I miss her little arms surprising me with hugs.. and the sweet way she would talk to her baby sister. All I have now is the pictures.
Sometimes I drown in them. . Often after I write I look for the right pictures to fit in. It takes me a good deal of time to find them since I am always pretty sure what I am looking for.. and then I get lost..
In memories .. good and bad..
I look at the pictures in treatment. How beat down and tired she looked. I can see it so well now. Almost like the outline of death around her. At the time though I couldn’t tell. . somehow I was able to just see beyond the dark circles and just see my daughter. At first her eye was so jarring to me.. but at some point I just stopped noticing. Now looking back through pictures its startling to see it..
… .to remember how she was. And how in the moment I was able to forget. . .
This is a picture I came across the other day. That lead me to need to get my thoughts on this out.. The one that so perfectly describes the relationship between Jennifer and her littlest brother. The way Nicholas is leaning into her.. and her leaning onto him.. her arms wrapped around him. He was so protective of her.. and he let her take care of him in ways he has never let me.. But then her eyes. I didn’t even notice them that night at the bowling alley. But they are glaring in this picture ..
A picture of of true love.. and impeding death.
I hate that we put her through so much. Being away from her family.. her home.. Pumping drugs into her.. Forcing her to get up early.. not eat.. be put to sleep and then woken up. I remember the way she clung to me before she went to sleep. She was scared daily.. in different ways as time went on. But every single day. It never truly got comfortable for her. Just another way I feel like I failed to protect her.
In the beginning she was so quiet before we went in for radiation. The “cuddler” who cared for baby Charlotte would barely get a nod from her. The stream of drs and nurses that we would have to talk to each morning struggled to elicit a response. But afterwards.. fear gone.. treatment over she came back to being our Jennifer. Spunky and goofy.. always good for a laugh.
But then it started to change. She was more settled into the routine. We would hop the squares to get back to the radiation room. She would proudly show the “cuddler” the way to her private waiting room.. and even show them a magic trick she had to open one of the doors. When she woke up though she was in a bad mood. Tightly wound into herself. It often took a few hours for her to relax back into herself. Unless we had a office visit. Her oncologists. ..
oh my God.. . those words hit me.. my daughter. MY baby has an oncologist. I think I am truly just hitting the realization that a child of mine has cancer.. .
.. her oncologists could always bring her out of the dumps faster that anything else ever could. I don’t know why the change happened though.. why she was so off after radiation in the latter half of treatment.. I am fighting the urge desperately right now to try to figure it out. Because all my thoughts are so negative.. thinking of her hurting/fearful/dejected. .. no good will come from living in those thoughts..
I had somebody come photograph one of these days of radiation.. to remember the moments.. Here is her posting and video of pictures from that day.
I just watched it.. so much stands out. How lucky I was to have that time with my 2 girls. To bond.. to try to instill a sisterhood that will carry Charlotte through a lifetime. How little baby Charlotte was.. How I wore her carrier all the time.. it was a piece of my daily look..
Just like Jennifer’s beads of courage necklace. She loved it.. but wanted me to wear it for her. I would still daily.. but I am so scared its going to break. And all the necklaces from her birthday party. Also safe in my room.. too scared to have them break on me..
My diaper bag. I loved that thing. It’s sitting near me now. Still packed from our last visit to the hospital. . when we found out it was time to take her home.. and keep her as “comfortable as possible”. We couldn’t even be told “comfortable”.. because when cancer is eating you away .. there is no comfortable I learned.
How she became know in Packard for her fashion sense. . In recovery, nurses would come over to check out her outfits. She was so proud of that.
But she had to take off her jewelry and headbands.. Everyday she wore different pieces of jewelry.. except the necklace her Daddy had given her when she was just a baby.. That she wore daily. So I got to wear them for her while she was asleep. They all seemed to really love my girls there. Jennifer often tried so hard to give them a reason to smile..
Up until right before I held her to be put *almost* to sleep. Then she let herself really need me. It was like it was just the two of us alone in the world in those precious minutes.
Lean into me. waiting for a feeling to overcome her that she hated.. but that she trusted me enough to do .. day after day.. She would go limp in my arms and I would lay her down.. Sometimes she didn’t react as I whispered “shrink tumor shrink” in her ear.. but as I wrote this day I know she always heard.. Other times she would reach for me.. begging me with the little strength she had not to go yet. .
I remember this particular day my friend was going to come take pictures of radiation treatment and the clinic visit too.. but radiation took too long, Jennifer was struggling to breathe, my friend had to get back for a meeting.. So we never got the clinic visit pictures I wanted, I figured I would do it myself another day..
This day.. that her body has struggled so much in treatment.. when she woke up she wanted me on top of her. She needed to feel my weight on her. Oh what I wouldn’t give to relive that time with her.. I am thankful for the pictures of it.
I am trying to be aware of that now.. That I may well look back and miss this time too.. of the impact of telling people my daughter died 5 months ago.. Of still having the last tiny piece of polish on my toe from our last pedicure together. Of the numbness I realize I am still shrouded in in so many ways..
The orange bag with J.Kranz on it.. that held her supplies.. since she came back day after day.. 7 weeks of the 3.5 months that we knew..
…that we knew…
..she has cancer.
Oh my God.. oh no.
Oh my God.
She has cancer.
Oh please no.. please no.. Oh my God.. please..
She is only 6. No no no.. not her.
…Until there is a cure…