Here
Some time has passed, years actually, and here I sit maybe ready to tell the story. Emma was born on Valentines Day of 2012, and at just 6 weeks old she quit breathing, in the arms of her mommy Emma’s physical body stopped.The next minutes, hours and days were more than a struggle because it turns out Emma is more special then any of us could have imagined -so much so she is unlike anyone else of this earth in her physical diagnosis’s leaving medical staff lost for direction and unable to give life expectancy.Day and night we sat by her small plastic walled hospital bed, feeling the weight of when -not if, but when is she going to die. Several triumphs in discovery matched with setbacks a very intricate set of treatments were implemented and finally, Emma was staying stable. The time came, teachings began and Emma was allowed to go home. The days and nights have been long, and as the decisions were made it was apparent to Mommy and Daddy that quality of life was their focus. Quality over quantity because they’ve been shown while they are unable to control how long she is here they can at least with love create a life for her and their family of the utmost quality.I’ve been humbly privileged to be by their side in this journey they’re on with Emma, in the beginning, time by their side was a priority. I approached Mickayla (Mommy) very early on and said while you may not want to think of this in any capacity -do you want for me to, or do you mind if I document her life in pictures as we are here.....? I said because someday when she is older, you will be able to look back and tell the story of her life in images. She was immediately on board, I was nervous as shit -and terrified..... am I taking pictures of a dying baby? What will people think? Is this in any way abnormal, unhealthy or disturbing to others? But I just went with my gut, this is going to be a lot and a lot of this is going to be parenting autopilot so yes, yes we want to document this story and she will live to tell it.This didn’t change once they were home, I’m dedicated to providing my friend, my family, with family pictures as much as we can because ya’ll -pictures are important! A few years ago (2015) it was time, the weather was cooling and the McGovern’s needed some updated family photos. Prior to picture time, Mickayla said to me, I want you to do something, I want to give you permission to do something and with this I want you to tell a story with your words, don't just tell people what it’s like to appreciate life -show them in pictures ....... I want you to take some pictures without Emma........ as tears filled my eyes I knew what she meant...... show them without Emma, because their everyday reality is frankly this - every day to them is today could be our last day with Emma.This isn’t to say they sit around, staring at Emma, starting at each other thinking this is it today could be it let’s sit here and be with her we may not get another day. Their reality is they still live life, everyday, normal life but with so much gratitude in the fact Emma is there that day, each of them are there that day. They vowed to Emma, knowing her struggles and complications they are going to spend her life showing her what it means to be loved and they extend that to each other as a whole family. It’s easy for people to post memes that say “tell someone you love them today, because you’re not guaranteed tomorrow” or several variations of the like, ya’ll THIS is their reality and it’s hard as fuck! I have shut down, I have ignored, I have flat out stayed away for periods of time because their reality is brutal to swallow and they live it every day more than those of us with our memes can imagine.Emma is 6 years old! We do not fully know to what extent she can see or hear, she speaks her own language, she gets around her own way, she knows no other way of life but her own and I can tell you she is blissfully happy and the joy radiates on her face. I have never felt such a humbling, full acceptance, unconditional love moment as I do when that little girls face lights up and she squeezes me tight (even though I haven’t been there for many many many months and am sure as shit she won’t even know who I am) SHE reminds ME what it means to be loved! What it means to just be here, Just in this moment. Emma knows and when we let her, she teaches us exactly what just being here and living in this moment is about. Here today, who knows about tomorrow that isn’t our business. To worry about tomorrow is to live in fear and an inability to live in and accept this moment, now this moment -because we are always exactly right where we are meant to be, ALWAYS!
