Wednesday, December 23, 2015

Battle lines and battle scars

Every topic worth discussing has at least two sides.

When I started blogging it was mostly an plea for help and support. My daughter was born with a rare genetic syndrome. I had never heard of it. My husband had never heard of it. We were lost. Sarah did not breathe. She turned blue and was whisked out of the labor and delivery room while I was being stitched up. My husband was torn between being with his scared wife on the operating table and rushing to follow his new daughter to the NICU of another hospital. 

Sarah spent her first three months in the NICU. I moved in with her. For three months, we shared that small room. She was intubated and tube fed. I was pumping breast milk. Mom's cope in different ways and that was how I coped. I couldn't do much. For awhile, I couldn't even change her diaper. But I had to do something. I was her mom. So I set an alarm and pumped every three hours, even through the night. I was desperate to keep up my supply; that was what I could do. I was not feeding her or changing her clothes and diapers. I was not snuggling her and burping her. All the things you do for your newborn, I could not do. But this one small thing, I could do. So I did. 

I tried to be aware of her non-physical needs. I would sing to her and read to her. I hung a black and white mobile over her NICU crib. I asked for nurses who were more comfortable with intubated babies, and I would hold her for as long as I could. I stroked her face and I learned infant massage. 

I plunged in and learned all the medical terms. I participated in morning and evening rounds. I asked every single person who came into the room the same list of questions. They didn't always know, but I would keep asking until I thought I understood. I avoided Dr. Google, who insisted my daughter wasn't going to make it out of the NICU.

I prayed. I prayed a lot. I begged everyone I knew and some people I didn't know for prayer. I started writing updates on a blog. I would explain the medical setbacks and difficulties and triumphs. That is how my mommy blog started. I write about my faith and my family. 

Eventually, I did find a community where I could talk about Apert syndrome without explaining everything. (Yes, it is genetic. No, neither my husband nor I have it. Yes, Sarah could pass it on. No, I don't understand random mutation.) Apert USA is a triumph of support and hope. A decade or more ahead of me, a family had looked for community and not finding it, they built it. This online community became a lifeline. What do I do? What can I expect? Why aren't her teeth growing yet? The community was a mix of parents of kids with Apert syndrome and adults living with Apert syndrome. Because the syndrome is rare, the community would not be possible without the internet.

Through the years, I have received a few gentle scoldings. "Beth, we don't say 'Apert's' we say 'Apert syndrome.'" Using the correct terms when we are talking about something most people have never heard of matters, even if it is a few extra keystrokes. As soon as it was said, it was obvious. One concern was not aimed at me personally, but it applied to me. One of the adults wondered if we would write the same things in the same way if we thought our children were going to read it. 

That stung a bit. I love my daughter. Would my writing hurt her? 

That was about two years ago. I have since found friendship with the person who delivered the criticism. I love her humor. I love her photography. And, except in the context of telling this story, I usually forget that she has a genetic syndrome. My daughter's genetic syndrome. The one I write about all the time. I want that for Sarah.

When I write now, I write with the expectation that my daughter will read it. I don't know if she will; that will be up to her. But I write keeping in mind an adult Sarah looking back. 

Yesterday one of my favorite places on the internet, The Mighty, blew up. What started as an accusation of ableism and dehumanization, deteriorated quickly into a full blown noisy battle. This particular battle began with a post which some found offensive and some found helpful. I didn't see it so I won't speak to that except to note that the the reaction of The Mighty was quick and appropriate. An apology. It wasn't perfect, but it was right. 

When someone tells you that they are offended by something you have said or done, there is only one right response. You say, "I'm sorry." You can say you did not intend to offend, but only if you've already made a genuine apology. You don't get to argue that they shouldn't have been offended. 

Anyway, it was too late. The infighting had already begun. Adults with disabilities were yelling at moms and caregivers. The objections were rational and real, but the delivery was aggressive, by design. They went on the offense accusing. As a mom and a mommy blogger, I was personally attacked. 

I understand the anger. 

About a week ago, I became aware that one of my pictures had been stolen. It was a darling picture of my sweet girl using suction to clean her doll's nose. Our normal is not normal. Someone was using this picture to boost their click count. It seemed innocuous enough- it was one of those, "type amen to pray" posts. But it wasn't. It was an invasion. It was offensive. My daughter is not your clickbait. My daughter is not your sob story. She is not my clickbait or sob story either. My daughter is a person. Using her is contemptible. 

The battle lines looked neat. Mommy bloggers versus adults with disabilities. Clean lines are useful in battles. Everyone knows where everyone stands. Don't shoot your allies. 

In reality, though, the lines are far less rigid. When you take fire from both sides that fact becomes painfully clear. And you must stop shooting! 

I'm a mom. I love my daughter. I am her advocate and her caregiver. I welcome the criticism of people who understand, in some ways better than I can, what she is going through. 

I am also a human. The surgeries and painful battles have taken their toll on me too. Her story and my story are, for the moment, impossibly entwined. I can't leave the vines on the ground or cut them apart. We are growing together. We are aiming for her independence, so if you perceive me getting in her way I certainly want to know. I can move. For the moment though, I am the stronger vine. Without me, she falls. Don't cut me down.

Mom blogs are not unimportant or trivial. We aren't looking for validation, we are looking for support. We aren't trying to throw our kids or anyone else under the bus. We need hope. We need advice. We need strength. We need community. Our kids need everything we have and often much more. 

When moms raise awareness or ask for help, are we just whining? When we complain that it is hard, are we hurting their children? When we find inspiration and share it, is that inspiporn? When we admit publicly the very real consequences and difficulties of parenting a child with special needs, are we betraying our kids? Many of us have PTSD. Many of us struggle with anxiety. Are we allowed to talk about that? Before you consider an answer, I'd argue that there isn't a real answer. There are perspectives which are sometimes both true and mutually exclusive. 

My voice is not universal. My voice is not impeccable. My voice is the voice a flawed human with a unique experience and perspective. My voice found a home on The Mighty, right alongside other voices which said opposite things. That is a wonderful place to begin a discussion. We are natural allies, if we want to be. 

Progress means looking forward with love and respect. It doesn't mean shutting up. It means listening generously. 


  1. "Her story and my story are, for the moment, impossibly entwined. I can't leave the vines on the ground or cut them apart. We are growing together."

    So beautifully put. So very true.

  2. "Her story and my story are, for the moment, impossibly entwined. I can't leave the vines on the ground or cut them apart. We are growing together."

    So beautifully put. So very true.

  3. I love this. From one mommy to another.