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."

What I'm Missing

This photo was taken last week when our friends came to visit with their baby, G. This baby means a lot to us, for many reasons, one of which is that his name rhymes with Cayden's, intentionally. To have Cayden honored through this baby's name was the biggest gift we have been given. To know that when people ask this baby, as a little boy, as an adult, where he got his name, Cayden's name will be mentioned, is such a comfort and a blessing.

Watching Scott with G. was amazing. And it broke my heart. Seeing this radiant smile, knowing that Cayden will never be able to gaze up at it, will never be held in his daddy's arms again, breaks me. I miss a lot about Cayden, but I especially miss seeing him with Scott. This Sunday will be a hard day.

Puppy Love

When my world turned upside in January, there were a few things that held constant. And a big one was Scout's love, affection, and companionship. I don't know what I would've done over the past few months, especially during my leave from work, if I hadn't had Scout to care for. She provided endless cuddles, the perfect walking companion, and the unconditional love that only dogs can give. We're sad her little brother never got to meet her, and we know they would've been great buddies. In this photo, she's curled up on the blanket that covered Cayden's isolette. People have asked if we think Scout understood that something was going on back in January, and while there's no way to be sure, this picture speaks a thousand words to me. Happy 5th Birthday Scouty!

As I was walking to meet a friend today, my feet were aching. It reminded me of this poem that I found early on in this journey. I think it's very, very appropriate, though I'm not so sure about the strength part, not really feeling that yet.

My Shoes

I am wearing a pair of shoes.

They are ugly shoes, uncomfortable shoes, I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so badly that I do not think I can take another step.

Yet I continue to wear them,

I get funny looks wearing these shoes.

They are looks of sympathy I can tell in others' eyes,

yet they are glad they are my shoes and not their's.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes, you must walk in them.

But once you put them on, you can never take them off.

I realize that I am not the only one who wears these shoes.

There are many pairs in the world.

Some women are like me and ache daily as they walk in them,

Some have learned how to walk in them so that they don't hurt quite so much.

Some have worn the shoes so long that days will go

before they think about how much they hurt.

No woman deserves to wear these shoes.

Yet, because of these shoes, I am a stronger woman.

These shoes have given me strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

-Author Unknown-

Carly

Please go here to watch a short video about my amazing friend Carly. If the world were filled with more Carlys, it would be a much more beautiful place.

Pools, Lakes and Rivers

In the beginning, my heart was drowning in a deep pool of sadness and grief. There were no steps, no way out other than to hoist my heart up and throw myself onto the side. But I didn’t have the strength for this, so I continued to drown. The constant tears kept the pool filled and depleted me of any energy necessary to escape.

The next shape of my grief was more like a lake, with graduated, sloping exits. Like the pool, the tears kept it filled, but when there were tear-free days, it was easier to muster up a little bit of strength for my heart to climb out from time to time.

The current state of my grief seems to be more river-like. Many small rivers running deeply through my heart, that swell when the tears come quickly, but recede a bit when things feel okay. When there’s a downpour, they rise and crest and flood the rest of my system. There’s a river for thinking what Cayden would be doing if he were home with us right now. There’s a river that’s often overflowing, of Cayden’s last day with us. And many more. They’re not as all consuming, the rivers, as the pool and the lake, and I’m fascinated and surprised by this shift. The idea of rivers seems more manageable to me, I think I’m less likely to drown in rivers that ebb and flow and have branches and rocks and things to grab hold of, than in a deep pool with no easy way out.

As different as they are, these three have something in common, though--the people. The people who threw a buoy, held out a branch, and mostly those who jumped right in to either hold us up when we couldn’t even tread water, those who swam with us. People who didn’t care about getting wet and cold and uncomfortable, and helped us from slipping underwater, from drowning. You are, and continue to be, our lifesavers, in every sense of the word.

three months from goodbye

It's raining here in San Francisco. Makes me feel like Mother Earth is a kindred spirit, missing Cayden today as much as I am.

Incompetence

Let's discuss how cruel it is to require a bereaved mother to call the billing department of a hospital to explain that the reason her son doesn't appear on the insurance anymore is because he died two weeks after he was born, but yes, he was on our insurance and so far everything submitted has been covered. Then let's analyze the idea of spending another 20 minutes on the phone with aforementioned billing department, arguing about whether her son is "eligible" for services already provided by a pediatric cardiologist and a pediatric neurologist during his short life. And just for kicks, let's further ponder that the insurance company may reject the claim submitted for the genetic testing currently underway in Germany, despite the fact that the cost of testing is .02 percent of all costs associated with Cayden's care. 02 percent is a big number, though, it's just that a two-week NICU stay and numerous specialists are an enormous number, so it's relative.

Talk amongst yourselves

But you know what? At least we have insurance to cover this. And the billing lady actually said, "I'm sorry" which is more than a lot of people have done. Sigh.