Stolen Joy

Christa Doran Uncategorized 7 Comments

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.

2%.

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

Comments 7

    1. Christa, every time I read your writings I am always so amazed by how you capture each day, each moment, you? Your family, and Lea. She is a gift with such a beautiful spirit! I’m thinking of you and yours.

  1. Breaks my heart to read all you are struggling through as a family. The reality is none of us has a guarantee. Drink in every happy moment, giggle and goofy joke. I pray for a miracle for your precious girl and am glad that she feels strong enough to enjoy some of the things she loves.

  2. Oh Christa..i am sending you all of the love and strength i have. In those moments when your mind wanders and goes to what you feel you didn’t do, know that for each of our children all that matters is this moment in time. They cherish the now in each moment. Not past, not future, but right now in the precious moment. Love you so much, and give Lea and all of the girls an extra kiss for me.
    Xoxoxo

  3. Christa, your family has been in my thoughts and prayers every day since Hillary told me about Lea. From what Hillary has shared with me about you and from your posts you are and will continue to be an amazing mom. As a fellow mom of 3 I know that all we can do is our best for any particular moment in time. You are doing just that!!! Your family will continue to be in my heart and prayers. I loved Leas owl!! Hugs to all of you.
    Andrea

  4. We’ve never met but I feel like I know you. I’ve fought the urge to post here for these weeks out of respect to you and your family, but today I realized it’s obvious I need to reach out. Six different types of cancer in my family have pushed me to throw myself into many books and hours of online research around cancer and the WHY. The big WHY. I certainly don’t have all the answers but I know God has given me just the pieces I need to know, WHEN I need to know it.

    When I first learned your news, my gut burned inside and my eyes stung. This just as easily could be MY first grader. That day I waited for my son to get off the bus and started planning the steps I would take for DIPG treatment as if it were happening to us. My insides are burning again now as I write this. I must ask, have you heard of reiki? This is “energy medicine.” This is the release of blocked life energy and the healing the of the soul. At least that’s what it does for me in healing my own disease. This is not something that’s covered by insurance, back by research or measurable by any instrument. She might not feel anything or notice any particular change right away. It takes days and months for cells to change. Energy medicine works the same way.

    I met with my reiki master today as I do seasonally. She is also a creative type, just like me, just like Lea. I had no idea she’s worked with children before. I know Suzanne’s cancer patients sleep better and feel more at peace in the days after working with her. I don’t know what’s right for you and your sweet girl, all I know is this would be one of the first things I made time for if it were my son among all the other pieces of the puzzle. Love, Corinne (Kristen is my sister-in-law)

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