The Weight on My Shoulders

S., a friend who knows grief and loss and healing, sent me the beautiful words below.

When you first begin healing, it is like you've been handed a huge boulder you must carry. The boulder is heavy, and it hurts to carry. You always feel burdened by it. It's always scratching you and hurting your hands and shoulders. Even when you're doing other things, that boulder is always on your mind; you can't just leave it at home. You're always thinking about it.

But, gradually, as you carry that boulder around, it erodes and becomes smaller. It becomes easier to carry, less burdensome. It's still painful and frustrating, but you can focus on other things too. The boulder keeps getting smaller and smaller, as time passes, you work through therapy, talk to other survivors, and tell your story.

Eventually the huge boulder is no bigger than a pebble. It will never go away, but at this size, you can put it your pocket. Every once in awhile you feel it, but the pain is manageable. It's still part of you, but it doesn't define you. You can take it out when you need to, to look at it and remember, but you can also keep it hidden from view. You've taken a huge, rocky boulder and turned into a small, smooth stone. You have reclaimed your life.

On this six month anniversary of Cayden's death, I've been thinking about these words. My grief is not a boulder, but neither is it a pebble. Oh, there are days when my back and shoulders are rubbed raw and bleed as I struggle to carry the boulder. I hate those days. Most days, though, it's a large and heavy rock. The kind of rock that makes your arms ache and that you can carry only for a few feet, before you must release it to the ground, for fear of dropping it and breaking a foot. I know by now that grief is a personal path, but I must admit that I'm curious to know when my grief will become something I can put in my pocket. That time feels so far away. Just like my boy.

How is it possible?

Cayden, six months ago today this was me and this was you. So excited to meet my Sprout for the first time, so worried about your early arrival, so thankful for your excellent care. It feels like yesterday and a lifetime ago. We love you and miss you little boy.

There will be an answer, let it be.

Berlin has completed Cayden’s genetic testing for Multiple Pterygium Syndrome and no mutations were found in any of the five genes tested. What does this mean? Best we can tell, Cayden did not have Multiple Pterygium Syndrome but most likely died from Pena-Shokeir. Pena-Shokeir is not a disease but a phenotype, a cluster of symptoms resulting from decreased movement in utero. There is no genetic test for Pena-Shokeir. Studies suggest that some cases are sporadic and are some are autosomal recessive; we will never know whether Cayden’s case was sporadic or recessive.

There is some relief in having closure with Cayden’s testing. All we can do now is hope that Cayden’s case was sporadic and that it’s something we’ll never have to worry about again, however naive that hope may be. But we also can't forget that, as Angie so perfectly put it, "the world is a random, chaotic shitstorm, and sometimes you get caught in the eye of it."