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One Full Hand

December 15th, 2017      (Sara)

Five years ago today, I gave birth to The Dragon. When you ask Maya how old she is today, she will likely smile and lift her whole hand. She will hold it high with all her fingers spread out as wide as she can spread them. Today, she is one full hand. Last year on this day, I reminisced about Maya’s birth story (if you’d like, you can re-read it here). I would be happy to re-live that day over and over for the rest of my days. It was a beautiful (yet challenging) day. From the moment the dragon was born, she challenged us in ways we never knew were possible. She has proven to be an incredibly smart, strong, funny, happy, creative, inspiring, fierce, loving, empathetic, and magical little soul. I can’t imagine my life without her and while I wish I didn’t have to be part of the “cancer family club”….I am proud to be her mother. And proud to be her friend.

Today, and for many weeks as the eve of my child’s 5th birthday crept into reality, I have been ruminating the idea of having a 5 year old. I have many friends and family members with children that have all been 5 years old. I was once 5. Scott was once 5. My incredible 91 year old grandmother was once 5. I mention this because turning 5 years old, in this country, is a seemingly underrated milestone. One that when I was pregnant or even pondering having a child, seemed inevitable. We all turn 5 years old. That is unless, we don’t. Because I also, unfortunately, have friends (new and old) that have children that are 5 and others that are now pictures on the wall. Memories in their hearts. Souls that never made it to a whole hand. At least not in this world. Today I would like to pay tribute and respect to those souls that don’t make it to five.

I have been mourning for a friend I lost just after Thanksgiving. My little Dalia was only 7 months old (almost) and she wasn’t supposed to die. It was a terrible accident that led to her death and while she had a very complicated genetic condition, she was winning. I think that is the toughest piece of her story for me to heal from. She was doing well but things went sideways. Anyways, she touched me deeply and I have thought about and cried for her family every day since. In my line of work, I don’t typically lose children like this but it seems as though this year has been one of pain. I feel this cycle of pain and am ready for it to move on. Having the opportunity to meet, hold, love, and help children like Dalia and my little Wren make me a stronger and better human and mommy. I was told little Dalia’s service was the day we celebrate Maya’s 5th birthday. I felt guilty and sick to my stomach at the idea of having a party for my child when another mother is grieving her loss. But because I love Dalia, and her mother, I changed my mind and now feel unbelievably grateful to celebrate my child’s 5 year birthday. I take nothing for granted and am blessed to have known this family.

I want to share another story with you. A few years ago, well before Maya was diagnosed with cancer, I saw a video produced by a non-profit called LifeBouy. This company’s goal is to decrease the severity of illness due to insufficient hand washing. They help to educate (and offer soap and clean water) to countries and populations that are lacking. It is incredible how many children we lose because they can’t sufficiently wash their hands. This video affected me in a way that I can’t really explain. It is a beautiful video and a wonderful celebration. Please take 3 minutes to watch it when you can. It made me cry even before my child almost died (a few times) before the age of 5. But here we are. We made it to one full had. She made it. And she truly is thriving.  

I express all this pain to get it off my chest not to put the burden on you. I don’t want to share pain but sometimes I feel like if I talk about it, it will ease. I have been sad lately but still find time to smile. Our family has also been battling a really gnarly community virus. Scott and I were sick for weeks and the kids too. Maya is now on 10 days of antibiotics for bilateral ear infections. As soon as I think we are getting to the tail end of this bug, we get knocked down again. I’m not sure it is possible for me to wash my hands any more than I do…but I will try! The good news is that Maya’s numbers have been decent enough and she hasn’t had a fever (knock on wood).

The Dragon continues to fly high and never ceases to amaze Scott and I. She continues on all chemo medications at this time and is actually tolerating them well…I think. We had a wonderful weekend celebration for both Scott and Maya. Friends, family, fun, and SNOW (well at least in our living room)! It was a magical break and we all enjoyed some fun times. As we head into the Yuletide we honor this season and cycle of pain and coldness and are hopeful that the next year will bring more joy, more laughter, more light, more health, more happiness, more Love and more Life. Here’s to a One Full Hand of life and to many many many many hand fulls more. 
Love is Life.