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.