The Shift

special needsWhen our daughter was born and we discovered she had a craniofacial birth defect, it was earth shifting. Everything I knew and thought I knew changed. I recall not truly realizing what it meant. She was born without an ear canal or outer ear, a craniofacial birth defect called Atresia/Microtia. What is this? What does this mean?

The reality sunk in all too soon when she was wheeled away from me to have her newborn hearing screening done. One side wasn’t testable because it was closed. The other side? She failed it. Twice.

The Shift

Becoming new parents is huge. Becoming new parents of a special needs child is something else entirely. Capt and I experienced, simultaneously, the fear that accompanies a calling: “Am I strong enough? Are we?” Something unlocks inside your soul, and you slip uncomfortably into one of two places: strong enough, or devastation.

I watched her every second for a flinch, a twitch, something to show me she wasn’t deaf. In those first few days, the flinch never came.

Exhausted from typical newborn baby struggles coupled with the stress of creeping fear, I left her and Capt in the room to go put pajamas on and brush my teeth. I looked up at myself in the mirror, mid-tooth brushing, with a vision of myself as the parent of a deaf child. I cursed myself for not paying closer attention in my college sign language class. And then I cried. Hard. The kind of cry that comes from a place in your heart you’ve never been. Holding it together wasn’t available to me in that moment. There was nothing for me to hold together. I was empty. All the thoughts and fantasies about the child I had with the man I love and call my husband circled the drain with the water in my sink. This isn’t what I signed up for. How did this happen? Why? What now?

What rose out of that huge empty space, the place where who I thought I was, who I thought WE were existed untouchable, is the marriage we have now. A fundamental shift occurred after the birth of our daughter and the weeks of uncertainty that followed. United in a shared experience of fear, longing for might-have-been, and the vast unknown that lay ahead, his was the only hand I could see and feel in the dark, questioning space I found myself in. “Help me. I’m falling apart, and I can’t find any of my pieces.” Time after time in those first weeks, I would reach out blindly and his hand was always there. I don’t know how he did it, because I know he was falling apart too. He carved out a piece of himself for me to gather strength from. I know it must have been painful.

There’s something that happens to you when you no longer have the luxury of wallowing. The shift happens. It’s about standing in the new space created by the circumstances you find yourself in, and making it yours. This is what survival feels like.

In following years of learning what this meant for all of us, we found our way beyond survival and began to carve out the relationship we have now in that formerly empty space of fear and longing. What can arise out of the darkest time is sometimes the most important and changes the trajectory of your life. The child we have now; the strong, happy, loving, hard-of-hearing (not deaf) girl whom we wouldn’t trade or change for anything, the integration of her and her unique needs into our lives (the fear is gone!) and the relationship we found in those early days of parenting made us the family we are today.

The Day I Knew He Wouldn’t Leave

One from my Random Thoughts blog. I still feel this way.

I *knew* when the church doors opened and the music started to play I was in the right place at the right time with the right person. The last 16 years hasn’t always been easy, but it’s always been worth every minute.

The Day I Knew He Wouldn’t Leave.

My Grandma died in 1997. I had been dating Capt. for less than a year.

At that point, we were still kind of tiptoeing around each other. Neither one of us were the “fall fast fall hard” types, and I wasn’t sure if I could REALLY honestly believe that he would be there when I needed him. I’d been disappointed so often before with others bailing out or making an excuse when I was having a hard time, I had trouble even contemplating he might be different. So, I kept asking him, “Are you coming with me?” And he would say, “Yes.”

Then he got sick. Like, barely lift his head off the pillow sick. The fear I was going to have to go through this incredibly emotional experience without him was growing. All I knew was I really wanted him there. We had only recently said, “I love you,” and I was hoping against hope he was the last man I would say it to.

I struggled with myself in the days leading up to the funeral. He had been passing all my little tests thus far. Tests like, “how will he do when he meets my parents?” And, “how will he do during my family Thanksgiving?” With flying colors.

So here we were. One of my most beloved grandparents was gone. I missed her terribly, and really wanted him to be there. I knew I felt stronger with him near me.

The morning of the funeral came, and he showed up at my apartment, wearing a suit, eyes watering, stuffy nose, miserable, and there for me.

It was a turning point for me. After that I really let my guard down with him and allowed myself to fully trust his word. He was there for me. He didn’t try to run when things got hard. No excuses why he couldn’t be there. He’s been there ever since, and I’m so thankful.

Everything is Toxic!

toxicI’ve had this post in draft for a few months now. It’s time to put it out in the world.

TOXIC!

A few years ago I started down a journey of learning about and getting attached to where our food actually comes from. I called it “The Year Of Food,” and wrote a series of blog posts on Random Thoughts about the things I learned along the way. We have some work to do along these lines, as a country.

I became loosely attached to the “New Food Movement” a few years ago and advocated for GMO labeling. I haven’t changed my mind on a label. I believe in disclosure and truth in labeling. What I have changed my mind on is the “New Food Movement.”

I can’t sit by and watch while meme after meme shows up in my newsfeed about how toxic everything is. What I’ve found is some of the people who represent this movement believe that Western (i.e., evidence-based) medicine is trying to kill us. I am the daughter of a Western-based medical practitioner. I have been taught in scientific method, logical fallacies and the psychology of bias. I can’t abide what I’m seeing and associate myself with it any more. Reason has to prevail at some point.

For example:

Girl Scout cookies are poisonous. Wheat is toxic. Seed oils. BEER. School lunches, breakfast cereal, cream soups, milk, your perfume, sunscreen….you get the idea. Don’t get started on vaccines.

My kids go to a school where ~30% of the children are on free or reduced lunch. The meals those children get at school are sometimes the only ones they get for the day. The school community holds a food drive every year for the families who are food insecure in our area. I will sometimes bring in easy, quick breakfasts for the school counselor to have on-hand in case a child is late to school and the cafeteria is already closed. These families don’t have the option to choose the “non-toxic” cream soup. They’re hungry, and they’re trying to survive. They don’t ask “is this ORGANIC?” They say thank you.

If you like Thin Mints, then help a Girl Scout out and buy a box. If you don’t have Celiac, eat bread if you want. If you like Coors Light, DRINK IT. (I won’t, but you carry on with your bad self.) You are lucky to have the choice. Many among us don’t. Screaming at them that their food is poison doesn’t help them, it creates shame. No one should be ashamed for doing the best they can with what they have.

There is an emerging eating disorder called “orthorexia.” It is defined as an obsession with the purity and quality of food. A sure sign we’ve gone too far.

The never-ending stream of fear memes around food has finally worn me down. As I said, I’ve been an advocate in the past for GMO labeling, and I still am. A label offers choice. However, extremism with avoiding any food or medicine that *might* have science in it is a serious problem that hinders health for all.

Asking questions of the industries producing our food is appropriate. I’m not advocating a head-in-the-sand approach to food. I am all for looking at the way we do things and questioning – is this good for humans? Is it good for the earth? Is there an alternative? What are the unintended consequences of these decisions when it comes to food production? Questioning science in an effort to further dialogue is good, and good scientists question themselves. That’s how discoveries are made, and how we move forward. However, it’s important to keep in mind that questions like these and the ensuing arguments are immaterial to a person who needs something to eat.

We have a long way to go in this country when it comes to food equality, education and quality, but fear mongering won’t help. I’m taking a stand. A two-tiered food system – those who can eat “well” and those who can’t – is wrong.