I am in awe of how well Ezra seems to be doing. His cheeks have great color and his eyes are so bright! He has rebounded from his double ear infection and we have settled back into a rhythm. I feel like this has been the pattern of living with this disease… we get lulled into thinking he will be stable and then things change. Dramatically. But we do all we can to try to live in today. It’s all we can do…
However… there have been a few very depressing things we have been trying to get arranged, so we don’t have to deal with them in a time of crisis- namely finding a cemetery and a funeral home. Ethan has been diligent about taking care of this and I am so grateful to him for doing so. It’s just awful to think about, but I know that we will be glad we have it all taken care of. The town we live in has a historic non denominational cemetery. Our wonderful Rabbi told us that in a non denominational cemetery, we can create a Jewish cemetery by delineating the area with rocks and (when available) dirt from Israel. In the Jewish tradition, people are buried as soon as possible after they die. We were running into a problem with the town that apparently they do not bury people in the winter. A completely insane issue to be worrying about… I can’t even believe I have to write about this. The closest Jewish cemeteries are about 45 minutes away and that is just too far. We want him closer. So Ethan has been trying to figure out how to ensure we could go ahead with a funeral, should Ezra die this winter. Obviously this is something we hope we don’t need to worry about, but we needed it figured out. Ethan was not be able to get a clear answer, so Rabbi Susan came to the rescue and we got it all arranged. We are so thankful for her help in navigating all of this. I took a drive through the cemetery yesterday. I wanted to see the spot for some reason and it reminded me, so deeply, how important it is to enjoy every moment we have with our little boy. We have him here with us now, and we won’t be able to come back to this time.
This blog has been a good outlet for me to share my thoughts and keep people informed. According to the wordpress stats, this blog has been viewed over 36,000 times in over 60 countries! Ezra has lots of fans in Germany, United Kingdom, the Phillipines, Chile… it’s amazing. SO… I have a favor to ask of all you. There is a Jewish tradition of placing a stone at the headstone when visiting a cemetery (http://en.wikipedia.org/wiki/Bereavement_in_Judaism). We have received so much love from around the world, and I would really like to have a symbolic way of sharing that love with Ezra. I collect heart shaped rocks and have for years. It’s amazing that once you start looking for them, they are everywhere. I would love to collect as many heart shaped rocks as I can from around the world. This is where each of you come in… I would love your help in collecting the stones. As you go about your day- perhaps you are taking a hike, or strolling on a beach- take a moment to look around and see if you can spot a heart shaped rock. I would love for you to send it to us (our address is at the bottom). It would be so wonderful to have heart shaped rocks to hand out at Ezra’s funeral from all of you. If we collect more than we need, our family will continue to use them in the years to come- sharing them with Ezra at each visit we make. I know this is a depressing thing to think about- and as I write this, tears are falling, but it will take some time to gather the stones and I feel like this is a special project to work on. I was thinking that if you find a stone you’d like to share with us, you can put your name and where you live on the stone. That way it is as though you are here with Ezra- sharing your love. Whether you find a stone this week, or 2 years from now- send it our way. It will forever be a special way for us to know that you are thinking of our sweet boy. Thank you in advance…
This is such a snap shot of our lives… trying to balance taking care of really difficult heart breaking things and then shifting to enjoy the here and now.
Ezra just woke up from his nap… I’m off to go play with my little boy.
xoxo,
Emily
Heart shaped rocks can be sent to:
Emily Bessey
86 Central St.
Hallowell, ME 04347
Sweet Ezra 
Yes. Absolutely. Wonderful… With you and sending strength and love…
He’s is a doll. He will be here on Earth for a long time.
My tears are falling for you, too. Every time I read your blog, I am in awe of your amazing ability to share such heartbreaking details with total grace and beauty. I’m off to wander through Zilker Park in search of heart shaped stones…
Emily Bessey every day you continue to make me feel so deeply grateful that I can call you my friend. I am going to start looking immediately for heart shape rocks. I will bring however many will fit in my overhead luggage in February. I can’t wait to hold that sweet boy.
We will be looking for a heart shaped rock to send our love!!! What a special and beautiful way to celebrate your son! Praying for a most special day today for you and your little boy!!
Lots of love and will begin the rock search! xo
Emily, I have been collecting heart-shaped rocks for YEARS! I will place one on my window sill to remind me to pray for all of you, and I will also send a few from my collection. I can only imagine how very difficult this is for you. I so admire your courage in sharing this. As I read it, I am often struck with the story and I can see this as a book one day. Bless your day.
I remember your collection well. I would love to look for heart shaped rocks for you and your little boy. Thank you for giving us a duty–will start the hunt in Germany tomorrow with Henry Finn and Juliet. Beautiful idea
Emily, you and Ethan are amazing. I hope you do’t get tired of hearing that because it is true. Having grown up in NY and living in Boston for 22 years,I remember the first Spring I lived in Maine, seeing lots of notices in the paper of burials and scratching my head wondering what that was about (not the first or only time). Then I learned that the ground is frozen in winter so many people wait until spring. However, obviously, it can be accomplished with a little effort and the right people and Rabbi Susan is definitely the right person. But for now, enjoy the snow with Ezra and Daisy and I will keep my eyes open for heart shaped rocks.
I’m so sorry to hear about your son’s illness. My heart and prayers will go out to you and your family. I will try my best to find the heart shape rocks and send them out to you. Bless every day your family has with Ezra.
Hi! I found your blog recently and saved urin my favourites. We live far from each other but share the same story. Our daughter Alice was born with type 1 SMA in March last year, in Stockholm, Sweden. I know excatly what you are going through and I do really like your blog – it feels like you are really living and trying to keep smiling and are full of hope. We are trying to live the same way, even though it is hard sometimes. Well, just wanted to say hi from a
….snowy Sweden! With all our love! Linda, tom and Alice
Noah and I will look for one at the greenbelt this week. Love you guys. 🙂
Beautiful idea! Would you mind if I shared the link to your blog?
My heart rock search is on! Love to you all and your beautiful Ezra!
My heart is breaking for you and your family. I can’t imagine the sadness your experiencing. I will continue to pray for God’s continued guidance. May He lay his hands on your sweet angel and bring him peace and comfort. My family and I will be on the lookout for your rocks, anything for your sweet boy. Take care and God Bless
My son, Cameron started collecting heart-shaped rocks for me a few years ago. He is ten now. I shared Ezra’s story with him and he would like to give you some of his favorites. We live in Augusta and share the same pediatrician. Dr K is a kind and loving soul.Is there any way we can bring Cam’s hearts to you? He chose a few he would like me to keep but he wants to give your family some as well. I have one heart rock that is larger and would not mail well. My heart aches for you and what you are going through. Your little boy is perfect and beautiful. I pray for you and your family to find peace. You certainly have an angel on your hands. His precious face will never be forgotten.
I became aware of your blog and Ezra’s story just now as Dr K posted a link on facebook. Just want you to know that I am praying hard for him and your family. You can just see that spirit in his eyes and know he is a special little guy. You are not alone, we are all here with you. Sending positive energy and well wishes.
Emily,
Tommy asked me today if I had any heart shaped rocks. I asked him why and he told me about your post which I hadn’t read yet. Griffin, Julia, and I will find a rock for Ezra and when we do, will send it your way. We love you, Daisy, Ethan, and Ezra and keep your family in our prayers every night. Not a day goes by that I do not think of you and yours and send you our love and light. Om Shanti. Jamie Perkins
I’m a friend of Ethan’s from high school. I am so sorry to hear about what your family is going through. My husband and I only collect heart shaped rocks and wish rocks, so we have plenty on hand that I will send your way ! If you ever wanted a larger one you could let me know when you would be at his parents place and I would gladly give you one. (We just moved back to Waterville and will be living 4 houses away)
Your family is in my thought and prayers.
Sue
P.S. Ezra is adorable!!
will start looking for a heart shaped rock here in St Maartin today.you continue to be amazing.Love to all, maxine
Emily-I will begin the rock hunt here in Texas today! Much love coming your way : )
Reblogged this on Theheartpainter's Blog and commented:
A heartfelt story.
I’ve got one for you! It is in the mail tomorrow. Please give Ezra a kiss for me. Love,
Emily, you have been for quite a while and will continue to be one of biggest inspirations I have known or could even image. You bet the Behrs will be searching all around for special heart-shaped rocks for Ezra and his family who are all amazing beyond words. We love you all!
Oh Emily, I am just a river of tears right now.
I have always collected rocks with holes in them, but from now on I’ll be looking for heart-shaped rocks! Maybe I can find Ezra a super-special heart-shaped rock with a little peek-a-boo hole in it. 🙂 I so wish I could reach through this computer and give you a big bear hug and cuddle that sweet boy of yours. So much love coming your way…
Your strength and love are a blessing to Ezra and to us all. You are amazing.
I am amazed and inspired by your strength, and touched by Ezra’s beautiful smile and warm eyes. My deepest sympathies to you and your family. Heart-shaped rocks will be sent your way from Canada, in memory of your sweet baby boy and in honor of your love for him.
-Sarah- (Friend of Holly Praytor King)