Waiting to Lose a Baby

March 25, 2014 § 3 Comments

There is a form of meditation in Buddhism which calls one to meditate on reality. One man meditated on skeletons, a woman on the imperfection of her body. Lately I’ve been ‘meditating’ on when and how my baby will die.

The way that you do that is to google late term miscarriage, induced labor of a stillborn, Trisomy 13. I want to know WHEN is it likely to happen, HOW is it likely to happen, or will I just have to wait and not know if Wright is alive or not – just keep going into sonograms for months and wait to see if she’s still wiggling and if her heart’s still beating.

I have a stroller, in a box, in my front hallway. I can’t bear to do anything with it, because for now, Wright is alive.

I make plans, a wedding this weekend, where I grasp for clothes I don’t feel fat in that don’t give away that I am pregnant because I can’t bear to tell another person that I am 4 months pregnant with a baby that’s going to die. As I’ve said before, people don’t like to hear about babies dying. They also don’t like women as far a long as I am to lose babies. You know, not for me, but because it makes them uncomfortable. “Could it happen to me???” Only if you are one of the lucky 1%. Do I need to worry about miscarrying while I am gone? What would I do? Should I just stay home? What about the marathon? If I was pregnant with a baby that was going to live, then I would be A OK to run, but I question whether I should – will I feel guilty if something happens while I am running or after. If I lose Wright before the marathon will my body be OK to run? I guess I can just sit in my apartment and do nothing and wait for her to die.

This is my reality. Every day. I wake up, sleep, and dream waiting for the most dreaded thing to happen. Justin and I try to make plans, and consider the best options… All we know to do is keep living as if every tiny little girl I see isn’t going to make me cry. We try to keep moving as if our hearts aren’t breaking, as if we have any idea of how to deal with this. Practically. Emotionally. Physically. I don’t know whether to love my changing shape, or hate it for what it won’t give me.

My ‘meditations’ on reality often make me sick. They make me cry. Sometimes, Justin and I just hold hands and cry.

Waiting to lose a baby as others have theirs can make you crazy. The incredible joy I feel for our dear friends that just had twins, the excitement I feel for my dear friend that is literally one week or so behind me… It is real and authentic. I am still pregnant, it just won’t end the same way for me. Even if I make it to 5 months… They won’t let me carry full term, because the edema on Wright’s brain is fatal. So we just ‘patiently’ wait for her life to end.

Mostly people want to know when we will try again. Ummm, I’m still pregnant.

I’m pregnant, but no one has called or emailed to celebrate with us. People don’t know what to say about a dying baby. So they say nothing. Silence is the form of cruelty that leads to loneliness. On the other hand, we really can hardly understand the people that feel compelled to share how their healthy children remind them of our misfortune. Thanks? Maybe silence is better.

I meditate on reality, because so many around me don’t. This is uncomfortable. It’s heartbreaking. There is little comfort in losing a child this way. It is painful physically and emotionally. In a world where people love to shove silver linings down the throat of your tragedy the only silver lining to be offered is the next child. As if a simple, “I’m so sorry”, “Thinking of you”, “Crying with you” weren’t enough. We are part of the 1% of the population that will lose their baby to Trisomy 13, we expect that waiting to lose Wright will be lonely business…

I write about my meditation on reality to offer some perspective to those on the outside looking in, for those of you who might encounter a situation in the future where you don’t know what to say and are tempted to offer those hurting your silence…

We celebrate the gift that Wright is. Silver linings or none.

We muddle through the bad news, followed by worse news, as we wait for the worst news.

We cry for our friends whose experiences have been similar. Multiple miscarriages, children with chromosomal abnormalities, still born children, children lost to other horrific tragedies… We are not victims of cruel fate, we are just people, and bad things happen to everyone without bias. We have said it before, and we will say it again, we don’t think our tragedy is special. The difference is that this is in fact our tragedy, and like any loss or tragedy, it is felt uniquely by those that experience it personally. Just like I would not claim to know how you feel about your loss, I do not think someone else can claim to know how I feel about mine. That doesn’t make it greater or more significant, it is just reality.

So we continue, waiting to lose Wright. We move through the days, with lumps in our throats, wondering if it will be today. We muddle through having to explain to someone we are pregnant with a baby that will die. We brace ourselves for their stories of hope, their friends who had a baby with Downs or Tri18, their resignation upon realizing there is no hope for Wright that most ‘first pregnancies end in miscarriage…’ We remind ourselves that we have to keep living, because it is not us that is dying…

I do not write to make you uncomfortable, but aware. Death and life are not new in this world – nor is our aversion to recognizing that death is as real as life. We will lose Wright. I may be 6 months pregnant when we do… Then we will have to figure out what to do. If we do nothing, it is as if she were not here, she were not a part of our lives all these months, as if we did not know her, her face, her heartbeat, her form that has become as familiar as my own hand. It will be as if we did not think of her every minute of the day that she was with us. If we decide to do something, we will certainly be met with the opinions of the gallery that feel compelled to share about the ‘real’ loss of a child. One that lived for hours or days after birth… We ‘shouldn’t act like we lost a child we had known.’ I think you can speculate what we have to say to people who feel the need to share such opinions…

The reality is that we are all on Wright’s same road to eventual death. Hers will likely come before she breaths a breath of oxygen. Her tiny body, her little heart, and her brief life have already changed us irrevocably and I would not give one day of it back, not one minute. Perhaps that’s why against all logic and reason I want every moment more that we can have, even knowing the end.

 

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§ 3 Responses to Waiting to Lose a Baby

  • christy says:

    Oh Steph…you may or may not remember this but oh so long ago in a strange country, I was having an intense moment of grief & you offered to let me punch my anger out on you. I just couldn’t do it at the time. But I so wish I was there to offer the favor back to you. To let you punch all you needed to. And cry all you want.

    Like

  • Cissie Keogh says:

    Dear Stephanie: I didn’t realize until today that you had a blog. I have been up almost all night reading them. You are a remarkable woman,and I hope one day to get together with you and Justin. We tried last year, but now let’s try again. I feel as though I know you – we Keoghs must meet! Love, Cissie.

    Like

  • My heart breaks for your loss. This is beautifully written. Please know that you are in my prayers.

    Like

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