Today, the weather matched my mood. Gray and stormy, with the occasional rain shower.
Last night I was searching for an “official” explanation for DIPG and below it several questions were listed.
What is the survival rate for DIPG?
Don’t click it. You don’t want to read that.
Click. Scan. Gut drop.
98% of kids with DIPG die within one year of diagnosis.
I know these statistics, but every time I see it, or hear of another child who is no longer on this earth because of it, I feel a wave of nausea fill my body.
In order to make these days joyful for Lea, myself, and for the rest of my family, I am living in denial. Choosing not to think ahead, I am taking this all one day at a time, praying for a miracle, medical or God given, every day.
Keira started preschool today. We have had at least one child at this school since 2011, and I know the starting routine well.
Send in medical records. Send in parent packet. List all important numbers and any allergies. Tell me about your child. Complete family photo collage to display at school in child’s cubby.
That last one is the one that started the waterworks this morning. Moments before we were supposed to be loaded into the car, happily driving to preschool, I was angrily cutting photos of my “perfect” family, all taken before this nightmare began. I ripped the clear tape from the dispenser, angry that I had to look at these photos. Photos that serve as a reminder of all we have lost.
There she was, staring back at me. My joyful girl, lighting up each and every photo with her bright smile, sparkling eyes and amazing personality. When people have asked me to describe Lea in the past, joyful was always the word I used. Although she was my most painful birth, she was my easiest baby. Happy from day one, she was always smiling, her big cheeks and bright smile brought joy to anyone around her in a ten foot radius.
She is not that girl anymore. My joyful Lea is already gone… the sparkle that was once in her eyes started to fade when the tumor started to grow in her brain.
When I look at the last family photo taken on our last “normal” family trip I can see that the tumor had already invaded Lea’s body. Her eyes don’t have the same sparkle they once did. She was already starting to change during that week on the beach in Rhode Island. For a few weeks something had been “off.” Mike and I would worriedly discuss her behavior, her short temper, occasional loss of balance, and the fact that the joy and light in her eyes seemed to have left her. Maybe she is sick…Maybe she has a virus… Maybe she is going through a developmental stage…Maybe she needs more intellectual stimulation…
I often wonder how long this evil disease has been in her body, stealing our girl and her joy.
I feel like I didn’t enjoy her and her joy as much as I should have. Consumed with work, and life, the stress I felt as a mom of three, and the daily “problems” I struggled with that now seem insignificant and small compared to all of this. I wasn’t fully engaged enough.
But I can’t go back. I can only forge on, treating myself with kindness, knowing I did the best I could for where I was. I am a different woman now, and I will never do things as I did them before. Everything looks different to me now.
As I type this, Lea is sitting at a large desk covered with ivory linen, doing one of her favorite things, art. Today we checked off number 22 on the radiation calendar. That means 22 more sessions until we are done with this part of her journey. Her fine motor skills have improved a lot in three weeks and she can now draw and paint again. Today she is painting one of her favorite animals, the owl.
The rain has stopped along with my tears and today I find joy in art, and owls, and having my girl just a few steps away.
See Lea’s owl and our daily joy on Instagram