559 days ago I had no idea that my life would change. 559 days ago I was contacted by a local hospital to provide portraits for a family whose baby was not expected to live. Baby Maya was born 559 days ago and I met her only moments from her birth. I also met her father and her grandmother who stood at her side in the NICU as her nurses took vitals, cleaned the vernix from her newborn skin and blotted her tiny little feet with invisible ink for her tiny little foot prints.
For the past two years I have been blessed and honored to volunteer as a photographer for Now I Lay Me Down To Sleep, a charitable organize who, through their volunteers, provide the gift of professional portraits for families experiencing early infant loss.
Baby Maya was born with Trisomy 18 also known as Edwards Syndrome. Trisomy 18 is a genetic disorder that can result in structural heart defects, kidney malformations and muscle disorders - to name just a few. Rarely does a Trisomy 18 baby live for long, the expectation is mere moments or days before their demise.
559 days ago I stood by and documented Maya and her family... surrounded by a love that gives me goosebumps to think about now as I type this - 559 days later. Little did I know that little Maya would have such an impact on me, nor did I know that I would grow to respect and love her parents as much as I do today. Admiration - total and complete admiration is what I feel toward her parents. They are amazing..and the rest of Maya's family ain't too shabby either ;)
Maya lived for an amazing 237 days. Twice I was invited back into her life to capture her precious face, her ridiculously beautiful toes and chubby little legs. I was able to hold her at our second meeting and I can almost remember it like it was yesterday. So sweet, like a little chunk of heaven in my arms. To me, Maya represented hope. Her parents represented grace, strength, love and compassion. Aside from the occasional lapse in judgment with regards to baby headbands, Maya's parents are amazing! ((You'd have to have seen the giant daisy headband her mother suggested Maya wear at her three month session. I will not let her live that down, even today, 479 days after Maya's three month portraits))
381 days ago I had the pleasure of capturing Maya for her 6 month portraits. You have to know that I am completely head over heels in love with Miss Maya by now. In addition to the physical defects that come with Trisomy 18 it is said that the disorder also causes severe mental retardation. I call bullshit.. or maybe not bullshit, but something else I can't exactly explain. My words won't do the feeling I have justice - it's almost as though Maya could see into your soul. Her gaze was absolutely captivating. It carried joy and hope and a sense of peace for me.
319 days ago as I was driving down some street .. I can't even remember where, but I remember the notification on my phone alerting me of a message I'd received on facebook. A mutual friend of the family and fellow photographer had messaged me with the news that Maya had passed away earlier that day.
I had taken her life for granted. I had assumed that sweet little Maya was here to stay! I looked forward to her 9 month session that was only a month away. I looked forward to seeing her sweet face, her ridiculously cute toes and chubby little legs.
My heart broke for her parents. A parent should never have to feel the weight and sadness of empty arms. My heart broke for her family. My heart broke for me and the whole world as it was no longer home for this little angel in a baby suit.
----------- Having wiped the giant glob snot off my chin, I'll continue.
191 days ago I met up with Maya's parents for cocktails. We'd promised to stay in touch and we did.. as Maya's dad and I ordered our alcoholic beverages her mother declined...and of course I didn't catch on, even though she was grinning from ear to ear and blushing at the same time... I didn't catch on at all until dad had to practically beat me over the head with the news... they were expecting. As a mother, I can only imagine the bittersweet mixture of joy, sorrow and fear they must have carried throughout their pregnancy. As their friend, I crossed my fingers, my toes, my boobs and prayed for a healthy baby.
13 days ago I received a text that baby CJ was born. Within a few hours I had the honor of meeting Maya's baby brother. Amazing - they have the same sweet little mouth. Maya's toes were way cuter, but CJ kind of makes up for it with his shaggy little head of hair. Eyes wide open and alert, I fell in love.
Maya and CJ's parents continue to inspire me. They have been through the shit and back and the love they have for one another hasn't wavered, instead - from where I stand, it appears as strong, if not stronger - today as it did the day when we first met. 559 days ago, the day Maya was born.
Oh and it doesn't hurt that they let me get my baby fix. They're good sharers as my 4 year old daughter would say.