One day at a time… I am focusing on making it through this morning. This afternoon. This evening. We watch a lot of videos of Ezra- especially those where he is giggling, or gazing up at Daisy, or working on moving his little pinwheel. His towel still hangs in the bathroom and there is a pile of his clean laundry stacked up on a chair in my room. Little reminders.

I have gotten up and showered each day. I’ve baked challah. I make Daisy her lunch. We play. A lot. I cry. A lot. Usually those things don’t happen at the same time. I don’t feel depressed, but I do feel. Which is healthy… I WANT to feel sadness and achiness. Our 8 month old beautiful baby is gone. That deserves to be felt.

Some people have asked what has been helpful… I appreciate phone calls and texts from my friends and family. I don’t always feel like talking on the phone- it just seems to take too much energy most of the time. But, I appreciate that my friends keep calling. I received a beautiful essay in the mail from a mama who lost her baby at childbirth. I found that to be heart wrenching, but incredibly powerful. There have been a few poems that I feel connected too and of course… music. I wanted to share some with you…

The first is I Will Do The Breathing by Matt the Electrician… he is one of my favorite Austin songwriters and I am so thankful to Tiffany for sharing this song with me…

Tiffany also sent us this beautiful poem by one of my favorite poets…

[i carry your heart with me(i carry it in]

By E. E. Cummings

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
                                                      i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)
I had made a mix a while back for a good friend who’s mother is dying of cancer. I had it playing in our car the morning of Ezra’s funeral. On our drive to the cemetery, Let Your Heart Not Be Troubled by our good friends The Band of Heathens, was playing. It was the perfect song to carry us to the excruciating experience of burying our son…
And then The Winds by Danny Schmidt was playing as we were driving home from the cemetery. Such a good reminder that if Ethan and I made it through that awful day, there is nothing we can’t get through… together.
Over the past 5 months- since Ezra was diagnosed with SMA, we have meet some very brave, compassionate and loving parents who have also lost children to this disease. My friend Erin put me in touch with Shaina, a lovely mama in Florida whose son, Jacob died from SMA in 2002 ( Shaina has been an amazing source of support and empathy through this whole experience. She shared this poem with me…

Bereaved Parents Wish List

I wish my child hadn’t died. I wish I had him back.

I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he was important to you as well.

If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you more than ever.

I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

I know that you think of and pray for me often. I also know that my child’s death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug.

I wish you wouldn’t expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.

I wish you wouldn’t expect me “not to think about it” or to “be happy”. Neither will happen for a very long time so don’t frustrate yourself.

I don’t want to have a “pity party,” but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.

When I say, “I’m doing okay,” I wish you could understand that I don’t feel okay and that I struggle daily.

I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.

Your advice to “take one day at a time” is excellent. I wish you could understand that I’m doing good to handle just an hour at a time.

I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.

I wish very much that you could understand – understand my loss and my grief, my silence and my tears, my void and my pain. But I pray daily that you will never understand.

Thank you all for your kind cards, emails, and of course… those beautiful heart shaped rocks that are coming in from all over the world. We cherish each one of them.

Team Ezra is working hard to get our first Hearts For Ezra fundraiser planned for March 10th in Hallowell, ME- it is really coming together! We have a HUGE silent auction (thank you to EVERYONE who has donated!!) and a wonderful children’s show lined up. Visit:  or for more information.