I both despise and am annoyingly drawn to reading articles that describe in tear-jerking detail how fleeting our children’s youth is and how we need to be 100% completely present at all times because we never know when it will be the last time our child misspronounces the word “pajamas”, throws their arms around our necks and begs for one more bedtime story, wants to be carried into the store, wants to be seen with us PERIOD etc, etc, etc… Real Simple, Facebook, Subaru and Cotton commercials- the message is everywhere. The time to experience the joys and frustrations of parenting a baby/toddler is NOW because before you know it, they will be 14 and not want to acknowledge your existence.

There is truth to these articles though and ever since Daisy was born, I have been painfully aware of how quickly time passes. I dreaded the day she actually called a bandaid a “bandaid” instead of a “bandann”. I anticipate her growth through phases with a deep sadness (and pride) because I feel like it is all just slipping away and I want to grab onto time and use all my might to slow it down. Prior to even becoming a parent, I learned how quickly life slips through our fingers and I do not want to miss out on a single thing. I was 24 when my mom died and 31 when my dad died. My experience losing my parents didn’t manifest itself as reckless abandonment- throwing caution to the wind and going wild. Rather I tend to be cautious. I am the worst backseat driver (mainly to Ethan and primarily in bad weather) because I see every car on the road as a potential threat to our safety. I am a chronic student- always finding a new thing to be when I grow up. I get an idea in my head and I do it. Before I even had children,  I started a journal called “Life Lessons” for my future children to reference- little snippets of advice and insights about a range of topics…preparing for a time when my children wouldn’t have me to call on. All along I had been preparing for the wrong loss. Sounds so depressing to admit… Little did I know that I would be caught off guard, that I would be faced with yet another, different loss- a loss so profound and so indescribable no “Life Lessons” journal could EVER have prepared me. A loss so painful, it feels as though my heart has literally been ripped from my chest over and over and over again and I wake up in the morning to find that this pain was not just a horrid nightmare, but rather a reality that my husband, my 3 year old and I have to come to terms with all over again. “Where is Ez?” “Who is going to be my brother?” “When we go to the cemetary, will Ezra pop up?” “When will I get to see him?” “When is Ezra coming home?”  “Why can’t I see Ez?” The tightness swells in my chest as I try to field these questions as calmly as I can. I feel Daisy’s childhood slipping away as she is forced to come face to face with concepts that no 3 year old can fully grasp… hell, I can’t even grasp the reality of it. “Tell me the names of babies that won’t die, mama…”

When we learned about Ezra’s diagnosis- of course I felt utter devastation at the news and I also felt a compulsive need to capture every moment with our little boy. I wanted video and photos of every second of our child’s life. The pressure I already felt at recognizing how fast our kids grow up was compounded by the reality of having such fleeting time with Ezra. Now these photos and videos are what bring us comfort. They help replace the images of Ezra dying in our arms and allow us to remember our boy as he was for the majority of his life- full of vibrant joy. This is the boy whose smile melts your heart… whose big brown eyes seem to see right into your soul… whose laugh made my day… God, I miss this kid.

Meet Ezra…