One of those days where old scars bleed

It's not just physical.

Not just impaired mobility and vision.

But social, emotional, and intellectual deficits as well.

And some nights the combination of it all makes me break.

I pour an extra glass of wine or stuff my face with chocolate in order to not feel the pain of loving a little boy who is not the one I imagined.

And yes, he is a "miracle". 

A  "survivor". 

A "light".

A "joy". 

But he also constant work, heartache, embarrassment, and grief.

Living grief of what will never be.

And sure we adjust.

We step back and fall in love with the soul before us instead of clinging to the dream of the healthy able-bodied child; but not without bargaining with every god and goddess we can name or wailing into our hands in the corner of the room.

As I write these lines, I picture my Mom reading them and worrying about my state of mind but I need to share the shadow side or premature parenthood in order to find the light.

Tomorrow is the last day of November, a month set aside to educate the public about prematurity. And I'm sorry, but I understand how Native Americans or African Americans must feel with their one month of dedicated historical remembrance as if their stories aren't part of our collective history.

As if Columbus and Washington didn't stand on their ancestors heads to carve their names in stone.

We need more than a month.

When I worked at the Providence NICU, as a Parent Navigator, my first goal was to add some pictures of preemies to the life-size photographs of healthy babies that decked the hallway to the Newborn Intensive Care Unit. I wanted a picture of a tiny hand gripping a parent's finger. Thirty-week twins snuggling in an isolette together. An image of kangaroo care, of a mother or father holding their beloved child against their chest, skin to skin. The doctors and nurses in the unit supported this goal but, at first, I heard resistance from the administration: We don't want to scare the pregnant mothers who come through here on tours.

Screw that. 

I should have had a tour of the NICU when I was pregnant as my double uteri put me in the high risk category for prematurity. And yet ever since I was seventeen, and at my first OB visit discovered that I had more than one cervix, vagina, and uterus, all I heard about was infertility, miscarriage, and healthy babies.

And yes, these statistics alone were hard to bare but someone should of told me about that place in-between nothing and healthy.

That place where babies are born long before their bodies are ready for the world-- and the earth stops spinning as you wait by their bedside wondering if they will ever come home.

You wait.

And wait.

And feel helpless and angry and empty and wonder what you could have done differently to create an alternate universe where your baby's umbilical cord remains uncut as he floats inside your darkened womb and  dreams of running barefoot through the warm sand.

You would do anything to rewind.

But you can't so you adjust. You wake every three hours to pump and study medical-ese, terms like Intraventricular Hemorrhage (which in plain speak means a stroke) and you sign the papers to let a surgeon cut into your less than two pound baby's brain.

No one has words. But they bring you frozen tuna noodle casseroles, tiny knit hats, and a latte just when you thought you might fall down.

Not every pregnancy ends in a healthy baby.

Some babies die.

Some survive, but barely.

And not a week goes by where I'm not reminded of what's not and what could have been.

I love my son but its an embattled love, thick with patched up wounds that bleed when stuck by something sharp, like watching him interact, all wrong, with another child, oblivious to the social cues.

The sway of his back as he stumbles across the room.

The way his eyes don't look at mine.

So I write.

The history of the United States is more than dead white men with a month or two set aside to honor the rest. Pregnancy, birth, and parenthood is more than sweet accolades with pink and blue bows.

Beyond the family Christmas cards there are mountains upon mountains of pain.

But if we share our pain with each other, just a little, we make space for the sun.

 

PS. In a previous post for prematurity awareness Tabatha asked me to write a list of what would be helpful to say and I guess, in a way, this is my long indirect answer to your question.

To sit with each others pain.

To not fix it or silence it or offer bright anecdotes: My cousin's friend's sister had a preemie fifteen years ago and he's now a six foot tall football player and...

Sit with it.

Cook meals or offer childcare for older siblings.

Listen. Even when it's hard.

Especially then.

Admit that you don't have the right words.

None of us do.

Sit with it.

(Thanks for asking Tabatha.)

Comments

[Faye]

Hugs to you. This post reminded me of one of my favorite lyrics...
"there are some things that you can't know
unless you've been there
but oh how far we could go
if we started to share"
~ Ani DiFranco

[alison]

perfect post. such honest words. thank you for saying them for me.

[Ginny]

I couldn't agree with you more, though I am coming from the perspective of a stillbirth mom. October is our month, though it is far overshadowed by breast cancer. Which is just as deserving but tends to get all the press (trust me, I've been paying attention, and trying to raise awareness. It's a long road). When my last child was in the NICU, I stood outside looking at the wall of photos of the "graduates" and thought about all the children who weren't strong enough to ever go home, unrepresented there. You're so right, people just don't want to know, but once you've been through something like that, you wish you'd known.

[Jessica]

So beautiful put. It is so hard in this culture to admit taht sometimes there are just no words. Hugs and love are so much stronger :) We just need to all figure that out :)
I understand that people don't want to know about the "in-betweens" or even about any ending that don't result ina healthy baby (miscarraige included), but like you I feel that we need to. If I had had any IDEA that miscarraige could have really happened to me I would have been more prepared. Would it have made it any better? Not really. But the heads up woulda helped!

[BethNavarro76]

Thank you so much for this post. I really like your blog. My daughter was premature and I'm not really feeling the affects until now (she's 3 1/2). I didn't think it really affected her because physically she grew and got strong, but emotionally we're having a hard time with her now. I know it could be much much worse and I'm so grateful she's healthy.

I also write for a stay at home mom's comedy blog to get out those crazy mom moments. And this month I wrote about having THAT KID. Thought you might enjoy. http://sahmmy.com/Mother-naked.html

Thank you for your blog!

[Niksmom]

Oh, Christy, you captured it so eloquently that it hurts. I've been struggling myself this week as Nik's seventh birthday draws near (Thursday) and the deficits and differences loom so large. Of course I love him with all my body and soul, but that doesn't mean I don't grieve and ache for what I thought would be ir what people assured me would happen...that he would simply catch up.

Sending you hugs and the loving understanding of another mom who's been there, too.

[Heather]

Its through your blog and so many others, that my eyes are opened to all these possibilities I never knew. And in a way, I wish I didn't know about them. But it's also nice to know I've been shown what could happen, and to have a bit more empathy for other people in my life.
Thanks for writing this!

[fleming]

I wish I could SIT with you.

[Kimberly]

Your posts of showing the joy of Elias' drawing juxtaposed with the grief of his deficits illuminates the extremes of raising a child with special needs. As I have shared that Ellianna has cerebral palsy, I don't think I shared that she was a full term, a healthy 'perfect' pregnancey that ended in her heart oxygen supply being cut off completely prior to birth. Even in a typical full pregnancy with no extra concerns-it can go tragically wrong. We were shocked and devestated. How? We celebrate that she has put the prognoses of death and profound disability behind and flourished. The pain is so deep and undeniable though as I watch her struggle and have to think about things that seem innate to everyone else. She is a great reader and interestly she dances very well and with ease, too. But at the age of 5 I need to still remind her to say hello when a friend says hi. We frequently have talks about how to look at people when we speak. Not only do you grieve the loss of your ideal future, but you grieve the work and struggle of the past to achieve the point you are. Their loss is magnified by younger siblings who sail through infancy and toddlerhood joyful and simply as it is ought to be. Oh, that's what it is like to pull up and bounce happy with gleeful smiles in your crib. Christi-I feel like you just write my mind out in your blog. I know it is no comfort but you are not alone.

[Kena]

Thank you for confirming that I am not the only one who feels the EXACT same way from time to time. I recently had my own "bleeding" moment that terrified my parents. I have found such comfort and companionship in your blog as I too ride the roller coaster of prematurity and it's aftermath. My now 6 yearold daughter, born at 26 weeks, is the female version of Elias. I also have a 8 month old son who was full term The stark difference of his path from hers has caused so many of my own old scars to ache and bleed so thank you again for being brave enough to speak truth so loudly.

[Kristine Lindblom]

Thank you for writing with such honesty. I get tired of parents only sharing the progress or the sweet moments of living with a disabled child. My daughter was in the NICU during the same time as Elias. I remember talking occasionally in the pumping room.:) Karina has Down Syndrome, different disability, lots of the same struggles. I'm glad I found your blog.

[Christy]

All your comments today have lifted my spirits-- not because you cheered me up but because you were brave enough to join me. Thank you. I wish I could individually respond to each comment but my sleep-deprived brain needs to rest. Please know that I read every word not once but twice. So I could also sit with you.

[Tabatha]

Thanks, Christy. I appreciate your answer...I think sometimes we as a society want a quick or easy response to give people who are struggling, because we want smooth social interactions, or because we want to fix things for them because we love them, when really we need to just slow down and sit.

[Kate]

Beautiful Christy. Thanks for your courage to share the complexities of your parenting journey.I wish I had known you then and could have sat with you. I come here for your honesty and your humor and your strength. Thanks again.

[susanna eve]

i wrote and then deleted a comment, partly because I didn't want my comment to show up on internet searches of my name in the future when my dd can read about what I felt about her earlier years, even if I love her so much too. I'll just say that I admire your courage and your honesty. All those of with kids who outside of that normal box know that pain, have those times when something minor rips open those scars, or rubs those should have beens in our faces.

[ghkcole]

Sometimes your posts remind me very much of my own posts. I think about you and your boy, and I believe the writing that you do is leading you on a journey that is good for you. The honesty and the processing are good. Parenting is brutal. Particularly brutal when our kids face harder obstacles than others. I hear you. I am sitting with you. I know how much we love our boys.

I wish I could buy you lunch, but you do live kind of far away.

I send you a virtual hug.