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…
http://www.youtube.com/watch?v=cM-PhwaWmIU
…
Tiffany also sent us this beautiful poem by one of my favorite poets…
[i carry your heart with me(i carry it in]
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.
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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:
https://www.facebook.com/HeartsForEzra or www.heartsforezra.org for more information.
xoxo
Sweet Ezra 
Oh, darling Emily, (and Ethan), you all remain in my thoughts and prayers daily. I am so touched by your courageous words. I lost my mother to cancer almost two years ago and now live in her house~ the home I grew up in. I have changed some things, but there have been so many little things, like you, that just …remain. She kept my father’s Pendleton plaid bathrobe hanging in his closet. It is still there. Now beside hers~ the last one I bought her. I so understand Ezra’s towel in the bathroom, the pile of cloths. I still have my mother’s shampoo on the edge of the tub. Cherish the little things. I so wish we had taken videos. Hugs to you all, one day at a time.
Thinking of you, a lot. Your words, again, leave me with tears in my eyes and a profound desire to do better…to be more patient and loving, to let things go (like the laundry and dishes). Ezra and you and Ethan have had a big impact on my family, and we thank you for sharing him! It is difficult from an outsiders view, not knowing what to say or how involved to get, but the wish list really helps. We can’t take away your pain, but we can go through it with you, or turn it into something positive, which you are doing with Hearts for Ezra. We are always here, and recently, one of us is usually awake (which I am less cranky about thanks to Ezra) …so please let us know what we can do.
I read your post and can’t get through them without tears in my eyes. I often have to stop as my tears blind me from reading your words. I think of all of you and wonder how you are getting through the day. Everyday some sort of thought comes to mind, whether it’s the beautiful pictures or Ezra, the heart warming pictures of you and Ethan with Ezra, Daisy missing her baby, or the funny story you shared about the time Daisy got a new doll and didn’t want to cut the string off because it was her dolls feeding tube! That story always puts a smile on my face and I love to hear those sweet stories! I want you to know I am always here to listen, to hear stories, or help out how ever I can.
Love to all. Sue
Dear Emily, Ethan and Daisy
I just read your entire blog from end to start. Thank you for sharing Ezra’s journey with all of us. This is such an important story to tell. My thoughts and prayers are with you and all your extended family. I will be searching for heart shaped rocks in all my travels. May you find the strength to continue making a difference for all the other children and families affected by this disease. Hugs to you all
Lainny Beaudoin
Hospice RN
I love Shaina’s poem! I haven’t lost a child, but when our son was diagnosed with SMA I felt many of those same things the poem expresses so well. Somehow you have to keep going in the same life you had before, but you are far from being the same person. It is sometimes tricky because people forget or don’t realize that you have changed, and why would they realize it. Sometimes it is hard to find the energy to introduce your new self to your friends, but we have got to keep trying. It takes time.
Note to Ima Jonsdottir above, probably the best advice I have read for Emily, I know neither of you but have followed the blog, I am Lindsay Barclay’s aunt and Ima has captured the essence of your grief, Emily your blog is beyond powerful , it reaches right out off the page and grabs the reader
Dear Emily, I listened to the music links and the songs are amazingly profound. Because of Ezra and your courage to share your family’s story, I do hold my children tighter and hold my tongue longer and try to play and be present and all those things we so easily overlook. Ezra’s beautiful spirit and your deep and true love for him ripple through the world Emily. You all are in my prayers.