Looking through pictures the other day, I found myself sounding just like Daisy, “why did Ezra have to die? Why?”…

And then my rational mind kicked in and I reminded myself that Ezra died because he had a disease to which there is no cure. I wish I believed that God has a master plan (and I know a lot of people subscribe to this belief set) and that Ezra is floating on a cloud somewhere hanging out with my mom and grandma. But I believe in my heart of hearts that this is not the case. He is not “in a better place” because I know that for an 8 month old baby, there is no better place to be than in his mama’s arms. Ezra died because Ethan and I did not know that we were both carriers of a disease we had never heard of and we passed this disease on to our child. We gave birth to a beautiful baby who (as Ethan says) was perfect in every way, but one. Ezra had SMA- an awful, genetic disease. It’s science, not divine intervention. And it sucks. Of the 30,000 genes in the human body, Ezra was missing one teeny tiny microscopic gene called the Survival Motor Neuron Gene (http://ghr.nlm.nih.gov/gene/SMN1). Without this one gene, the body deteriorates. People can live without entire organs and limbs… but the absence of this one gene was all it took.

One thing I recall learning in grad school is that usually sadness is at the root of anger. I think it is common with grief to feel angry- and understandably so. I remember feeling really angry at my mom’s oncologist for not being more proactive when her white blood cell count was off. Now, as I move through my days facing a whole new level of grief, I do not find myself looking to the sky and shaking my fist at the moon in rage. Rather I crumble to the ground in sadness. I just feel so sad. And empty. I miss my little boy and no amount of anger will change that. In fact, when planning the funeral, our wonderful rabbi mentioned something about wanting to share how she was feeling angry towards God about Ezra’s death. I can appreciate that this is where she wanted to direct her anger, but because we do not feel like God did this to Ezra or to us, we didn’t want anger to be a part of Ezra’s memorial. It is sad… dreadfully, heart wrenchingly sad. But, there was no need to add anger to the day. The sadness was enough.

Today marks what would have been Ezra’s 10th month of life. It’s been 7.5 weeks since Ezra died and at this point, I would say I’m a functional grieving mother. Much like a functional alcoholic, you would pass me in the grocery store, or walking on the street and not know the depth of my despair. I am genuinely happy to see people (it’s not a fake smile I paste of my face), I play Words With Friends (often quite well), and I’ve started working out and practicing yoga. But I do mostly feel like I’m a bit disconnected from society. I go about my day in somewhat of a fog and often collapse into tears once Daisy’s bedtime routine is over and I have a moment of quiet during which I allow myself to connect back with reality. Our reality. It’s not a bad dream, it’s not a story on Facebook that I can read, empathize with and move on. It’s my life and it is pretty damn depressing right now. Yesterday I was at the cemetery (like I said, pretty damn depressing)- it was a beautiful early Spring morning in Maine. The air was crisp and the sun was bright. I was standing at Ezra’s burial spot and was overcome. I started thinking about my beautiful baby boy being buried under the earth… tears were pouring, sounds were escaping from my mouth that were from a place deep, deep, deep within… when I heard a baby cry. I froze. Silence. The tears started again… and a few moments later again I heard the undeniable sound of a baby crying. The cemetery is located in an area that overlooks the river. I walked over to the edge of the cemetery and looked down towards the river. There is a walking trail alongside the river and there, going about her day, was a mom pushing a baby in a stroller. A mother and her child out enjoying the day and a few feet away, here I was sobbing at my baby’s grave. Such a dichotomy of experiences going on at the same moment… oh what I would give to trade places and be out with Ezra enjoying the sunshine… later in the day, we’d be playing at home and he would crawl over to Daisy’s dolls and drive her crazy as he got into her toys. We would all sit together and picnic on the floor…Daisy would feed him cheerios. He would gaze at her with unconditional love. Normalcy. Mundane Life. This is what I crave.

One gift of this experience has been the amazing people that have turned up in my life. One of those people is Mama Ceil… who’s sweet baby Kai died on the day he was born. Ceil is the friend of a friend- our stories brought us together. She knows about the deep end of the grief swimming pool that takes secret strength to climb out of… oh, it would be so easy to drown. Ceil’s words have been a life raft for me. A stranger’s letter in the mail became a friend’s warm hug… an I-won’t-let-you-drown embrace… I am so grateful. She has agreed to let me share some of her words. She wrote this essay on June 12, 2011…

Today is one year since the most precious and painful day I have known. It was this day, last year, when I held my son Kai Jackson for the first and last time. I have yet to find it in myself to write down my birth story. To move myself backwards and then forward through time; from the last blissful day of expectation to the following day’s silent ultrasound (no heartbeat). From my first stay in a hospital through 24 hours of labor and on to an eventual surgical birth. From the first glimpse of my mother holding her swaddled and still first grandchild, to everyone’s coos of what a beautiful baby he was. From the strength of my lovely doula’s support to the kindness of the hospital staff. From holding my beautiful boy in my arms (he smelled like lemon poppyseed muffins) to handing him back to the nurse, knowing I would never feel that precious weight again. But today, words come and demand to be acknowledged.

It has been a year. A year that moved at times like a glacier, cutting a slow swath through some primeval forest. At times time stood still, in the way it can only when there is absolutely nothing solid under your feet. The way Wile e Coyote hangs midair after running off the mesa. And then suddenly, a year has passed, and you wonder where its gone.

I think to myself, we should be celebrating Kai’s first birthday. But then, it doesn’t feel right. What do I know of “should”? Doesn’t the universe move according to some sort of structure? Isn’t there some order to things? Isn’t this life like the smallest section of a giant 3-D Eye picture- one you have to keep moving back from, keeping your eyes very still and then eventually, everything comes into focus and makes sense? I used to believe that the world was like that. 98% of me still does. But I admit, in the last year, everything I used to believe has come up for review. I can’t think my way into any sense of peace or comfort. That only comes from feelings I get deep in my body, from love I get deep in my heart. My mind goes crazy with grief sometimes and my body follows, in a panic of anxiety and fear and loneliness. I stumble lost, barely able to breathe. I reach out for healing in its many forms, eventually my fractured crazy self melds back towards wholeness, the breath returns and love trumps fear.

It occurs to me lately that grief seems to just be Love, under the Illusion of Separation. There is no separation. We are all grown of the same cosmic stuff, the same dreams of love and hope and healing. We are all connected. We are pure potential, pure energy, made flesh. We were not created so much as transmuted by some tenuous alchemy. We come and we go.

In “Song of Myself” Whitman says

Has anyone supposed it lucky to be born?

I hasten to inform him or her it is just as lucky to die, and I know it.

I pass death with the dying and birth with the new-washed babe, and am not contained between my hat and boots,

And peruse manifold objects, no two alike and everyone good,

The earth good and the stars good, and their adjuncts all good.

I am not an earth nor an adjunct of the earth,

I am the mate and companion of people, all just as immortal and fathomless as myself,

(They do not know how immortal, but I know.)

I miss my boy, I long with a longing that is greater than the ocean is deep. I haven’t held a baby since I held my son in my arms a year ago and I weep for my loss and the days without him stretched out before me.

This morning I sat and held him close in my heart- I asked him why- why couldn’t he stay with me.

He told me that it just couldn’t be, the way I wanted, but that he was with me- and would always be with me. Anytime I open my heart in love, without fear of hurting- anytime my spirit soars without fear of falling. He told me to feel for him and I would find him there.

One year later I am grateful for this heart that can love and break and keep on loving.

Thank you Kai for loving me and thank you beloveds, you caretakers of my human spirit who have stood by me and held me up, and shone your light in the dark nights when I couldn’t see on my own. Thank you. I love you all.

I appreciate all of you bearing witness to our experience and holding us tight in your thoughts. I know we will somehow make it through this dark, dark time in our lives… We do have so much to be thankful for- and you all are among the hands that work to lift us up. Thank you.

xo