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 ( 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.



Heart shaped rocks can be sent to:

Emily Bessey

86 Central St.

Hallowell, ME 04347