Tuesday, March 31, 2015

I wrote about people staring.

I had no idea how that post would resonate with so many people. When I wrote it for my blog, I was writing for an audience of family and friends. It was public, and I had no problem with it spreading far and wide, but I didn't expect it. 

Then, I read a letter a friend had written. It was to herself on the day her son was diagnosed with Angelman syndrome. It was touching and beautiful and personal. It inspired me to write my own letter to myself, on the day that my daughter was diagnosed with Apert syndrome. That letter came very easily. It is hard to write to everyone, but I can write to me. I don't have to worry about offending me. I don't have to give the whole back story. I know what I was thinking and what mistakes I was going to make. It was a good letter. 

Prior to that, I had heard of The Mighty, and read a few of their stories, but not many. I am in a few groups for families of kids with special needs, and Apert syndrome groups and craniosynostosis groups. I follow Children's hospital, where my daughter gets amazing care from amazing people. I am, I guess, in the right circles to see these stories and I had, but only in passing. When I wrote the letter, I was trying to decide if I should publish it on my blog or send it to them. They had inspired me to write it. I started reading on The Mighty. I loved their mission. I loved their stories. It is a great page, and I decided to send my letter to them. Then I scoured my own blog for other blog posts which might have a broader appeal and I found one I had written about people who stare. 

The Mighty accepted and published both my submissions. The letter to myself was quietly well-received. The letter to all parents was very popular, though. As soon as my post was up, I started getting friend requests and messages from strangers on Facebook. I found my post popping up in unlikely places. My friends would tag me when they saw it. It was exciting. I got a lot (A LOT) of feedback,  and almost all of it was very positive. The Mighty is intent on building a broad and accepting community, so even criticism wasn't very harsh. 

Today, the post went live on Yahoo. That is scary. That is not an insular special needs world. Both the point and the problem: that is a huge platform for my quiet voice. 

That is intimidating. 

I had been meaning to write about the most common disagreement. Not all parents feel the same. Not all kids feel the same. The message is not universal. I should write that. All these rattling thoughts should find their way on to a page. Universality is a tall order. 

But this time, there is a complaint which hit me a little harder. I wrote, "I already have to teach my girls that loving people who are mean is part of what it means to be Christian." I wrote it. And just like my letter to myself, it makes sense to me. But some people heard all kinds of things I didn't mean.

The people being mean must not be Christian.
Non-Christians can't love or act lovingly.
Christians are better people, more moral and more loving. 

That criticism stings. I didn't say those things! I wouldn't say those things! If they knew me they would know... but that is the point. They don't. If I am writing for a forum that large, my words have to stand on their own. Are my words implicitly anti-non-Christian? 

Honestly, I don't think they are, but I hear it. I hear the sensitivity. I hear the accusation. I hear the frustration. 

Steven Greydanus wrote a very harsh review of the Movie, "God's Not Dead." I haven't watched the movie so I won't speak to that, but the review offers this gem, "God’s Not Dead paints a starkly binary picture in which true believers are essentially without moral faults, have no need to grow or change, and generally sacrifice nothing of value for their faith, while unbelievers are essentially devoid of redeeming traits, lead empty lives, and are left in the end with a bald choice between conversion or despair."

Because, in fact, there is a narrative that insists that Christians are always the hero. Everyone else is always the villain. We are the persecuted, and never-ever-ever the persecutors. We are going to Heaven triumphantly and to Hell with the rest of you. (Seriously, if anyone quotes that out of context, I am going to look like the worst person. Don't do it, guys.) 

It is not a true narrative, but it is popular and dearly held.  

I am a Christian. Honestly living my faith means, explicitly, loving enemies, which is a step beyond most interpretations of what being a decent person means. But Christians fall short and non-Christians step up. Certainty we are not the only faith claiming similar teachings. Watching how people act toward mean people is not an indicator of faith or lack thereof, even if I would like it to be. 

I am teaching my kids my faith. A lot of what I teach my kids is universal. I am using my perspective and my language. Being mean is bad. Being mean is sinful. Not quite the same, but certainly not mutually exclusive. Both statements are true. This faith that I am trying to share with my kids requires certain behavior. The same behavior can certainly have other motivation. 

I certainly did not mean to imply that people who are not Christian cannot or should not love. Nor did I mean to assert that Christians don't act badly. There is enormous evidence to the contrary. I won't apologize for my faith. I won't take it back. I meant what I said, but I did not mean what you heard

So, another letter:

Dear Sera and Chuck and everyone else who thought I was heaping manure on non-Christians, 

I am very sorry.


Wednesday, March 18, 2015

Magic Shoes

As I walked out the door, my six year old, Lily, was worried. She always worries when I take Sarah to the doctor. But Sarah was breathing well. This was not one of her colds turned emergent. She was healthy. I had no qualms at all telling Lily, "This is not a big deal. This will be a quick trip. I'll be home in a few hours." 

A few hours later I was in an ambulance on my way to our second hospital of the day, to be admitted. We were rushing. They wanted to put her in an OR right away. Would Lily think I had lied? 

My three year old daughter was in the hospital again. The surgeries are bad enough. Honestly. But these unplanned trips really take a toll on the whole family.

It is hard to express the feelings associated with these events. It has happened often enough to feel familiar. Familiar enough even to inspire a certain level of comfort. Sarah slept peacefully in the back of the ambulance while I chatted amiably in the front with the driver. Familiar, but discouraging. It can be really, really discouraging. 

I don't want to be the mom who knows the ER doctors by name and has favorites. I don't want to be the mom who knows who to ask for when the nurse cannot get an IV. I don't want to be an ambulance connoisseur. But I am. 

Put on your game face. Wear optimism like armor. 

Avoid discouragement. Pessimism. Frustration. Above all, don't ever compare your kid to other kids. There isn't a special needs handbook teaching us how to be parents, but if there was that is what it would say. Block print, bold face, all caps: DON'T COMPARE. 

It isn't fair. But you can't go there, because your job- your one and only job in that time- is to help get your kid better and you can't do that if you are wrapped up in how unfair it all is. Life is unfair. That bit of pop wisdom doesn't make you feel any better now than it did when you were a kid. 

A good attitude is better medicine than anything a doctor can give, but it takes a lot of energy. Small things aren't always small. When what you really need is encouragement, small things are huge. When people make dinner or send small gifts to the kids or help with cleaning, it is huge. It is love. It is encouragement. It can be the antidote to wearisome pessimism. 

One of the first people to offer help and support and "anything you need" was Madison "Peach" Steiner-Akins. I don't really know her. I Facebook know her. She is a vibrant, enthusiastic, force and a champion for kindness. She is an artist and an optimistic visionary determined to reshape the world. 

She was offering the support of a community she built with smiles and art and joy. 

Peach believes that kindness is contagious. She believes that small things make a big impact. She believes that hope heals. She offers who she is. She founded Peach's Neet Feet. PNF uses a diverse group of artists, including Peach herself, who volunteer their time to make special shoes. Magic shoes. 

The shoes are custom painted for kids who need inspiration- kids fighting bigger battles than kids should have to fight. Each child has their own story and interests and dreams, and the shoes are a canvas for a bit of that. 

When Sarah received her shoes, she knew they were for her right away. Minnie Mouse and rainbows! She was so excited! We put them on, and she stood a little straighter than usual. I don't know whether they were a better fit for her foot than she was used to (See Kai Run makes awesome shoes!) or whether she was just excited and proud, but what happened next was pretty amazing. Sarah took a step. Then another one. Sarah walked all the way to her dad. It was not independent; I was helping her balance. That was dramatic progress! Before that day, I had never seen Sarah move her left foot independently- I would literally have to pick up the foot and move it for her. She would lift her right foot, then try to lift both feet together and she'd fall. I was beginning to wonder if there was a neurological reason for the preference. Just seconds after putting on her "magic shoes" Sarah was taking alternate steps! It was work, but she was working! The next day at school her teachers and therapists also noticed the magic. Only a few days later, they removed the support from her gait trainer!

On its own, that is pretty awesome, but it is just the beginning of the mission. The families are not asked to pay for the shoes with money; they are asked to pay in kindness. Wear the shoes. Be awesome. In payment, complete (at least) one random act of kindness. The community of kindness grows, watering hope which is contagious. 

With the shoes, Peach built a community. We share stories and encourage each other. We draw strength and courage. When someone needs a lift, she "peachlove bombs" them. She asks her people to help uplift families. Whatever they need. Siblings having a hard time? Parents overwhelmed? Families have different needs. The peach community steps up, sending anything from coffee cards to toys for the siblings to cleaning supplies.  Stuff is just stuff, but they are sending more than that. They are sending courage and hope and love. It is a beautiful and growing community of families and artists sharing stories and smiles.

Encouragement is not a small thing. Wanting to do something and believing you can are not trivial. Healing needs hope. Kindness spreads. Little things aren't always little. Peach's Neet Feet uses art to inspire kids. It may sound small, but it isn't. She's doesn't just say, "Get well," she says, "Go be awesome! Inspire someone!" It's a mad, genius mission to spread kindness and healing hope. And it is working. For the kids. For their siblings. For the community.