“Ezra is still my brother…”

“I don’t want him to die. I don’t know why Ezra died. I really, really love him.”

“I want Ezra to be staying home.”

“We need a baby in the house…”

“No babies are suppose to die…”

“Did Ezra die to someone else’s house?”
No, honey… he died and he is in your heart. He is in my heart and in daddy’s heart and in the hearts of everyone who knew him.
“Did you bury him?”
Yes, my girl. We buried him.
“Where did you bury him?”
In a cemetery in Hallowell. We will go there in the Spring and plant flowers and bring heart shaped rocks.
“I don’t want Ezra to die.”
I don’t want him to die, either. I miss Ezra.

“When I wake up in the morning, Ezra will come out of my heart and never go away again. I will pick him up and put him in his swing and he won’t even cry and when he wakes up from his nap he won’t even cry and I will bring him to mommy and he will have mama’s milk and then I will give him a bottle and he will stand up by himself, but he won’t walk because he is a baby.”

……..

These are conversations no parent should be having with their 3 year old. Daisy should not have to worry about her brother being buried. We ache with missing our little boy. I always had in the back of my head that as hard as living with the disease was (with the sleepless nights, the worry, the anticipation and fear about when his death would happen and what it would be like), nothing would be harder than learning to live without our little boy. It is an impossible feat. Ezra is part of our fabric, he is woven through this family and I can not wrap my mind around the fact that he has been ripped from us. He was 8 months and 6 days old. 251 days.
May 30, 2012-February 5, 2013.
Dates that will bring tears and gut wrenching sadness with each passing anniversary.
He has only been gone 2 weeks. He has already been gone 2 weeks. I want to crumple up on the floor and cry all day long. But with a 3 year old, wallowing in grief is just not an option. But grieving is an option. Ethan and I are working very hard to make it very normal to talk about Ezra, to cry about Ezra, to laugh about Ezra. If we are feeling sad, we say so. If there are tears, then Daisy sees that it is okay and healthy to cry about missing our sweetest boy in the world. We do lots of “remember when…” stories. We ask Daisy what she remembers, what she misses. We hear “babies are not suppose to die” and “why did Ezra have to die” a lot. We could not agree more…

With our good friend Dr. Kieran Kammerer, we are putting our sadness and anger at this disease into action. We have started a foundation called Hearts For Ezra with a mission of raising awareness and fighting to find a cure for SMA (Spinal Muscular Atrophy). We are really focusing on the raising awareness piece. We feel so strongly about sharing information about SMA- we don’t want our story to have to be your story.

The statistics are compelling:
1 in 40 people are carriers of SMA
1 in every 6000 babies will be born with SMA
SMA is the #1 genetic killer of babies under the age of 2
There is no treatment. There is no cure.

For those of you in the Northeast, please consider attending our first fundraiser on March 10th. It will be in Hallowell, Maine at Hall-Dale High School. Doors open at noon. There will be music, a magician, a former Ringling Bros. clown, a fantastic auction, face painting, a bake sale… it should be a fun time for all.
Please see our website: http://www.heartsforezra.org or our Hearts For Ezra facebook page for more information.

Thank you for following our story, for loving our son, and for carrying us in your thoughts during this most difficult time. We feel your love from all over this world… we appreciate every heart shaped rock we have received, every email or message we have read.

Heart Shaped Rocks can be sent to:
Emily Bessey
86 Central St.
Hallowell, Me 04347

Donations to the Hearts For Ezra Foundation can be sent through paypal to:

http://tinyurl.com/heartsforezra

or by checks (made out to Hearts For Ezra) to:

Kennebec Savings Bank
Attn:Deb Coloumbe/ Hearts For Ezra Foundation
150 State Street
PO Box 50
Augusta, ME 04332

Thank you in advance for your donation.
xoxo