Two days later. How can it be two days later… Every day that passes brings us farther from him. Farther from kissing and holding and smelling him. My bed is too big. And empty. Ezra’s little sounds, coughs, raspy breaths have been a constant on the pillow next to me for 8 months. Now the nights are too quiet. I am so thankful for Daisy as she gives us a reason to get out of bed every morning.

We had a really beautiful funeral for Ezra. The room was filled. Visitors, friends and family filled the hall to pay tribute to our little 8 month old’s life. The number of people that came was impressive. So many thoughtful people who took time out of their days to come and honor our little boy. Friends and family drove hours or flew across the country… we are so touched.

Below are the readings shared at the funeral…

Our friend Randi read:

“When a woman in a certain tribe in Africa knows she is pregnant, she goes out into the wilderness with a few friends and together they pray, and meditate, listening to the song of silence until they hear the song of the child. They recognize that every soul has its own vibration that expresses its unique flavor and purpose. When the women attune to the song, they begin to sing it out loud. Then they return to the tribe and teach it to everyone else.

When the child is born, the whole community gathers and sings the child’s song to him or her. Later, when the child enters education, the village gathers and again chants the child’s song. When the child passes through the initiation to adulthood, the people again come together and sing. At the time of marriage, the person hears his or her song. At each important life passage, the song is sung. Finally, when the soul is about to pass from this world, the family and friends gather at the person’s bedside, just as they did at their birth, and sing the person to the next life.  (Thank you to Tiffany for sharing this story with us)
There are no words to convey my deep sadness and sense of loss over sweet baby Ezra. It was my most sincere honor to have had the opportunity to meet him last weekend, to know him and to love him. I feel immensely lucky that our visit was serendipitously so well timed. I had the extreme pleasure of holding him, dancing with him, stroking his soft cheek with my fingers and with my cheek and following his charming expressions with his heart-stopping smile and those adorable eyebrow raises.

Just as stunning and inspiring was watching you, Emily and Ethan, so lovingly, so admiringly and so affectionately take care of Ezra with the utmost selflessness, loyalty and pure joy. He was just as taken with you as you were with him. There was no doubt that this was a true mutual love fest. And effervescent and energetic Daisy showed her love to Ezra by reading and singing to him and with her enormous-really enormous-hugs.

There is no doubt that there is an emptiness and tragic sadness to losing this bright, shining star. Please know that by sharing Ezra with the world through your pictures, stories and updates, that you have touched many lives all over the country and around the world, from those closest to you to those who have never met you- it has made us more humane, allowed us to love more deeply, connect with others more considerately and compassionately, stop taking those important to us for granted, to slow down and be more mindful of moments.

Emily and Ethan, you are surrounded by an immense fan club of family and friends who love you intensely.
I know the days ahead will not be easy. I know there will be an irreplaceable emptiness and loneliness ahead. But I also know how strong you both are, the substance you gain from each other and from Daisy. I have all the confidence in the world that as you embark on your lifelong journey, with memories of Ezra’s life continuing to bring you joy and happiness, that down the road, you will find peace.

I love you both and am here for you unconditionally. I, as will the world, miss baby Ezra and we will never forget him.”

Ethan’s father, Chip wrote a beautiful poem…

For Ezra

Two breaths

breathed life.

Glow, ember,

flicker, flame,

then conflagration

dances from his eyes

dances in his smiles

dances in his laughter.

This one warmed us.

Warms us still.

Flame flickers,

Dark eyes grey,

Smile falters,

Laughter fades.

Glow dims.

Now cold.

We, crushed,

are breathless.

But this one warmed us.

Warms us still.

Grandpa used to say,

“Small fires, not large,

Warm best in winter.”

(Thank you to Ethan’s sister, Jen, for reading this)

Ethan and I read this letter that we wrote to Ezra the morning of the day he died…

February 5, 2013
Dear Ezra,

You are the sweetest boy in the world.  The day you came into our lives will always be one of the happiest days we have ever known.  Since that day you have brought so much joy and delight to our lives.  Your bright eyes and beautiful smile bring light to the world.

You have such a good name, Ezra David Bessey.  Did you know Ezra means “helper”?  In your eight months of life you have helped so many people around the world.  People know about you and your fight with SMA.  You make them stop and appreciate little moments.  You make them hug their kids a little closer. You make them appreciate how fleeting life can be.

We are so lucky to be your parents.  You will always be a part of our family and we will carry you in our hearts.

Ezra, Daisy loves you so much, and she had some messages she wanted to share with you.  “You are so nice to me.  I like your smile.  And you’re my best brother, and I love you.  And I sing you a lullaby.  I love you and I miss you and I’m thankful of you and I’m grateful of you.  He’s sweet and kissful, and cuteful.  I love you and I care about you.  It’s a loving message. “

We don’t know how we’re going to live without you. You complete our whole family and our team Bessey.  We love you with all of our hearts and we are proud to call you our son.

Our Rabbi, Rabbi Susan, did a wonderful, heartfelt job leading the service. It felt intimate and honest. When we arrived at the cemetery, small white stones lined the area of the burial site. We added a few heart shaped rocks to the border. Daisy’s two teachers were at the service and had handed me a heart shaped rock that a special friend of Daisy’s had given to them. This little girl had decorated the rock with smiley faces… I gripped the rock through the entire service. I then added this rock to the little border. It felt important to me to have a rock from a child there. I appreciate every heart shaped rock we have received in the mail (I’m sure our postman wouldn’t necessarily agree). They have come from across the USA, even as far as Germany and Israel. We will share these stones during every visit. (

I hope to do a post soon about the way Daisy is processing all of this. She is truly a remarkable little girl…

We are in a slow transition to the action stage of this experience… no family should have to endure a loss this immeasurable. We are working with our friend and pediatrician Dr. Kieran Kammerer to start a foundation called Hearts For Ezra ( with the goal of raising awareness and fighting to find a cure for SMA. We have a fundraiser set for March 10th in Hallowell, Maine. It will be a FREE afternoon of fun for children, complete with a musical act, a clown who performed with the Ringling Bros Circus, a silent auction, face painting and food. It will be a wonderful event at the high school- doors open at noon. If you live in the area- please help spread the word.

Thank you all for your love, your kind words, your support.