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.

-Beth

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. 

Lent begins chez Hersom

Tuesday was a mess. But I should back up further.

I have been watching a skin infection come and go on both of my youngest daughters. The first time I saw it, I took them to the pediatrician, without urgency. It looked like a largish pimple. She said it was probably staph, and we treated it with an oral and a topical antibiotic. She told me that if it came back, I should use the topical antibiotic. It did come back. And I treated it. And then it came back again, and I did not treat it and it went away on its own in roughly the same time frame as treated. And then it came back again. It was not ever present- it was about once a month. I began to worry that it was a systemic infection that was just peaking out every once in awhile. I thought I should probably go back to the doctor. What the heck is staph? 

Anyway. It was in my agenda, but not a priority until Tuesday. Over the weekend another sore came alive. But this one did not go away. By Tuesday, it looked really bad. I decided I had to take her to the doctor. I wanted it cultured. I wanted answers. I wanted a care plan that did not involve probable painful sores once a month. 

The doctor looked at it an said it had to be lanced (Ew...) and that was not something she could do in the office. But it was a relatively simple procedure that could be done in an ER. She called ahead and we drove across the street to the hospital. 

Now, because Sarah is Sarah, things are never simple. The nurse came in and asked all the usual questions. What are in for? How long have you observed it? Is she otherwise ill? What is her medical history? She has thankfully been very healthy. So, imagine my surprise when they turned on the pulse ox and her heart rate was elevated. The nurse quite rationally suggested that Sarah might just be scared, but she didn't look scared. And let's be honest: it's not like it was an unfamiliar place. The nurse put on the other monitors, which reinforced the numbers. It was not a bad read, Sarah's heart was beating too fast. 

So we skipped the rest of her history. Sarah has SVT. I think she is in SVT. I'll suction to try and break her out of it, but you need to tell the doctor. 

SVT (supraventricular tachycardia) means that her heart is beating too fast. You can sometimes break the episode by stimulating the vagus nerve- and there are a bunch of uncomfortable tricks. Gag her. (Which is why I suctioned her trach.) Put ice on her face. Put in an IV. Having tried these three modes of torture it had been about forty-five minutes and she was still in SVT. (In fact, now her heart rate was higher, since on top of the SVT, she was really, really mad! With her cardiologist on the phone, we had to use a scary drug, called adenosine. It is kind of like a reset button for your heart. It's not working right, so push the button and it will stop and restart and hopefully be in a normal rhythm. Parents should not watch the monitors while this is administered. Flatline is scary. 

It seemed to me that the doctor was getting nervous. She was acting the way I act when I get nervous. She was over-explaining the plan. And the plan B. (Double dose of adenosine.) And the plan C. (Shock the heart.)  Wait. What? Plan C is what?? I prayed. I prayed like a protestant. "Thank you God that this first dose is going to work." 

I believed it. I was not freaking out. In retrospect I am, a bit. But then, I just knew. I was frustrated because needing the adenosine means needing a cardiology follow-up. And it means hospital time. My day was blown. But I was not scared, in that moment. It was going to work. And it did. 

Finally we could focus on what we came in with. (Remember? A skin infection?)

The doctor told me it was more than she could do. It was too deep. A surgeon had to do it, likely under sedation. That means admission. That means a new hospital. So we did all the paperwork and waited for the other hospital to be ready. Since it wasn't an emergency, it took awhile before the ambulance came to transport us. 

Sarah slept the whole ride, and arrived in the PICU in a fantastic mood. Although it was getting late, the surgeon was still there and he'd be able to see her that night. And, he decided light sedation in the room would be sufficient. No OR. Just a five minute procedure. They put her on her vent and gave her some drugs and told me to back up and not watch. 

The surgeon said, "You don't seem like the type of parent to pass out, but I'd be more comfortable if you didn't watch. We don't want two emergencies." I'd have been OK. I have been through scarier stuff, but I'm not arguing. I don't actually need to watch. And Sarah doesn't need me, she's asleep. He was a silly man, and he had everyone smiling as he completed the whole thing very quickly. "When you think of pus, think of us!" (EWW!!) 

It was a long day, but it could have been worse in a thousand ways. 

Sarah came out of sedation quickly. She was groggy, and acting drunk. It was cute and a little sad to watch. She was trying to sit up, but she couldn't without help. She'd push away my hand, then fall on her face in her bed and laugh. It was all so funny. Until it wasn't. She did need serious pain medication that night. By the next day, Tylenol was plenty. By day three, she did not need pain medicine at all. 

The cardiologist visited. He went up, slightly, on her heart medicine. He wanted to monitor, so even if the surgeon would have set us free, the cardiologist would not. I met with infectious disease specialists and the PICU team and general surgery. She could not go home until the culture came back and informed everyone exactly what this nasty infection was. It looked like MRSA. It acted like MRSA. I was trained on what to do about MRSA in the home, before the cultures were back. But still we had to stay until suspicions were confirmed. MRSA stands for Methicillin-resistant Staphylococcus aureus. That mouthful just means it is a specific strain of the staph bacteria which is resistant to a specific antibiotics. It is a tougher than average staph.

All told, it was a relatively short hospitalization. And her SVT is under control again, so that's good. 

Treating MRSA is harder. It was not a systemic infection that peeked out every once in awhile. It is a very common bacteria. Likely, the whole household is colonized. Healthy skin protects pretty well. But if the MRSA can get in, you get what we saw. Skin breakdown, or cuts, or even really dry skin are our bad. So, we treat everyone. And we treat everything. And we watch. For the next three months, towels and washcloths are single use. Sheets need to be changed more frequently. Hand towels are single use. All the towels, sheets and washcloths have to be washed with bleach. Everyone in the house has to take baths either with bleach or with this special yucky soap, twice a week as well as normal bathing. And since we are bathing more often and with harsher soap, we have to lotion up because dry skin is not our friend. MRSA colonizes in the nose, so everyone gets topical antibiotics in the nose twice a day for five days. And clean. Clean everything. Remotes, toys, phones... disinfect them.

For three months, more laundry. More diapers. More baths. More disinfecting. More chores.

When I got home, with a list of ten additions to my regular cleaning chores, I found out that my dear oldest daughter had been sick while I was away. She threw up in my bed. Not just the bedding, but the mattress had to be cleaned before I could go to bed that night. 

I guess it is good to hit the ground running in Lent. 

Blessings. I asked for help, and received it quickly. I am still getting emails asking what else I need. (Prayer! The answer is prayer!!) Every time I feel knocked down, I am astounded to realize I am surrounded with wonderful people who are not just willing, but who want to help. You people. You amaze me. 

Strangers

I have had a terrible time writing the Mighty prompt this month. Write a note to a stranger who showed incredible love.

It isn't that I cannot think of an example. I started and stopped six separate letters, and that was the narrowed down list. The man who didn't speak any English who helped me when I couldn't get the brand new wheelchair put together in an airport drop-off. The other NICU mom who hugged me right after I got the worst possible news. The surgeon who accidentally gave me the confidence to make the right choice for my kid. The nurse who gave me permission to be a mom in an ICU. The hospital worker who said just the right thing when I was depressed and lonely. The mom who helped me get home from a disastrous trip to the park.

There are so many letters to write. I realized my struggle was with the word stranger. None of these people felt like strangers. Or if they did, they didn't stay strangers.  When it begins to feel like the world is collapsing, you see who is holding it up and it is not a predictable list. When you suddenly realize you need help, who will notice? Will they step up? The world is full of quiet heroes.

I was talking to a friend about my difficulty. Her beautiful young daughter is a tough cancer fighting kids. She has one of those light-up-the-world smiles which break your heart. It isn't a fight anyone should have to face, least of all these little ones.

We've been friends since before either of us had kids, but we bonded in a new way over our medically complicated daughters. We've both spent long weeks at the bedside, worrying, hoping and praying for our kids. We both have other children, which tears our hearts. There is not right place to be when you have a sick kid in the hospital and a worried well kid at home. We both did a crash course in medical jargon, so we don't have to translate when we are talking to each other. Apert syndrome and cancer are not similar, but hospitals and fears are.

Stephanie said, "I mean, it creates bonds with people you never would have known and makes them feel large parts of our lives."

Yeah. That.

In some ways, the world is smaller. There are real limitations and lost friendships and connections. But, in some very real ways, the world is so much bigger. You feel connected with people you barely know. You are connected with people you barely know. And not just other parents.

When Sarah was born she spent three months in the NICU. For about a week, the hospital seemed like a maze. Where do I find food? Where do I find coffee? Where do I find anything? Despite this, or maybe because of it, I was never actually lost. Every time I left Sarah's room, someone would ask if I knew where I was going. I wouldn't, of course, so they would escort me. It was an interesting phenomena. There was always someone. A doctor, a nurse, a receptionist, an aide, a tech, a janitor, another parent- no matter who it was, they'd offer to take me across the hospital to my destination. I puzzled about it then. I am an optimist. I believe the world is full of wonderful people with few real exceptions. This experience reinforced that, but it also puzzled me. My optimistic worldview would not have been shaken if they had simply given me directions. I'd have gotten lost, but I still would have been grateful for the favor. These are very busy people in a very busy hospital!

A few weeks in, I knew my way around. I was on my way walking briskly and confidently toward the cafeteria when I saw a woman who looked confused. I asked where she was trying to go, and I escorted her there. It did not occur to me to give her directions or to ignore her. I did not think anything at all of it until she offered her profuse gratitude. I realized, that this hospital had successfully built a culture where helpfulness is expected. It is just what is done.

Parenting a kid who is fighting a medical battle submerses you into an unfamiliar world. It is difficult. You might expect it to be unhappy, but it isn't. It is a strange world where it is hard to find strangers. You meet people and enter into their lives. Fast connections are formed and they are real.

We know that kindness matters. Small things can be huge things. We know that a smile from a stranger is sometimes all you need to stay positive. And we know that love and kindness and helpfulness brew healing. We know that the unseen, immeasurable things can be just as important as the measurable things. We know that the medical fights happen right alongside the psychological ones, and choosing one can mean losing the other. We know.

I decided to finish the letters.  All of them.

I read a very sweet and heartfelt ode to family and childhood this morning.  It is incredible to think about childhood and family as a mold. It made me realize, yet again, how very blessed I am to have the family I have.

I come from a huge, Irish, Catholic family. Both my parents come from large, tight, knit families. They are different. 

My Mom's side are very pragmatic. When my husband met them, he was startled by what he perceived initially as indifference. You cannot complain to these people! They have no sympathy! I don't even remember what the complaint was, but one Aunt rubbed her finger and thumb together and smiled. "It's the world's smallest violin playing the world's saddest song, just for you." 

Everyone laughed and it might have felt harsh. But what happened next was typical. Everyone, all at once, asked what could be done. What can you do? What can we do? How can we fix this? They are full of love and caring. They have empathy. They are strong and not afraid of emotion. They will not cave in front of a problem. And they won't let you cave either. They are not nosy, gossipy, pushy types. You won't hear them blabbing your problems to anyone who will listen. They will talk to you. And it will not be critical, but it will not be passive either. You are going to hash out solutions. 

Dad's family is loud. The Thanksgiving table is boisterous and perhaps hard to follow. It is not out of the ordinary to have several heated discussions going on simultaneously. Politics, religion, literature, history. Quite a number of them are or have been activists, so comparing jail stories is not as uncommon as you might guess on meeting the crowd.

Again, my dear husband learned by fire. It was election season. You might think that if you put a group of similarly raised people with similar values in a room that political discussion would be a merry game of back-patting. Not so, in this family. It was loud. Vehement disagreements based and similar foundations made the discussion exciting and fast paced. 

"Well, since we all agree that... it is obvious that..." 

"It is not obvious at all. That's a silly conclusion. Your mistake was..."

The Church this and the party that. Everything is evident. Of course.

"So, Josh, what do you think?"

...

Poor man. But he knew how to play the game. He chose a politician and made a relatively innocuous, but not obvious, observation. And the discussion moved on quickly with explosions. 

At the end of the party, everyone hugs. We all miss each other. What fun! What a good party! As long as there is argument and wine, everyone is happy.

Both sides sing. There is always music. Both sides drink. There is always wine. I could go on and on about how amazing my family is. They are tough, but empathetic. Brilliant and opinionated, but not judgmental. And Irish.

Awesome.

Awesome in that great and terrible sense when it suddenly dawns on me: I am a grown up now. I am a mom and I have kids.  If family and childhood are a mold, I am as much a shaper as a shape. And that is terrifying. That is some measuring stick I am holding. 

Winter network

Special needs networks are awesome. We depend on each other for help and advice. We lean and love and ask and emote. We get to know each other and each other's kids, even when we only actually meet a few of them. Just like in real life, you don't want to admit that you have favorites, but sometimes a kid just steals your heart and you cannot explain why. You meet silent heroes, who just quietly help whoever needs help. You meet loud advocates. You meet loving families working aggressively to find normal and you meet crazy, loving families rejecting any semblance of normal. We admire little heroes. I have hundreds of amazing acquaintances and a few close friends from these networks.

But it is not all happy optimism, advocacy, and empathy. A disproportionate number of these parents suffer from anxiety and depression.

And at this time of year, it is especially hard. The kids are sick. Not all of them at once, but for the past several weeks, not a day has gone by without one of our buddies sick in the hospital. And even those of us whose kids are not currently sick, we are worrying too. Is that cough a first sign? Dry air? My sweetie, who healthy has more snot than most kids, is especially boogery. It doesn't gross me out, but it worries me. Can she keep her airway open? Do I need to treat this? 

We heard the news about the flu shot before you. We knew that it was going to be a bad year. That kind of information makes rounds in these circles long before it is mainstream news. 

This is the time of year when all the sudden, special needs networks take their toll. We pay in tears. We are tired. We are worried. Our friends are tired and worried. We work hard to stay empathetic. We open our hearts. 

Sometimes I wonder, are my out-of-network friends sick of my sick posts on Facebook?  I don't share every story, only a small few.  Still, "Pray for my friend whose kiddo is dangerously ill," has become a regular feature on my Facebook page. 

Today I am praying for the parents.Thank you for all the support and prayer and love you have offered.  Thank you for bravely continuing to offer empathy, even when it hurts. We will get through these months. Spring and sunshine are on their way. 

Tinsel and incense

The kings are wandering. They have not made it to Bethlehem. In my house, they are still in the wrong room, roaming past the Purel and around the Christmas children's books. Mary and Joseph made it today.  They are looking ever so tired.  The kind animals have moved out of the barn, since our set really isn't big enough to house both the Holy Family and the animals.  They are huddled around the Noel candle. There are cookie crumbs everywhere, so any resident mice can have their fill before tonight's required hush.

Hush.

I love the magic of Christmas. I love the blend of deep and rich theology against the starry, sparkly merriment. Christmas celebration echoes its theology elegantly.

This is the night when our Lord humbled himself. God as man. He didn't don a baby costume and pretend. He didn't set His divinity aside for a few years. Fully human. Fully God.

I cannot comprehend it, but I can smile at it.

Today my sister came to visit bringing her daughter. We made cookies.  While they were in the oven, we turned on Christmas music. The Children laughed and played and danced and twirled! The smell, the mess, the laughter, the light, the decorations- That is Christmas!

In sweet, joyful, human chaos, we celebrate and welcome our Lord. We sing with the angels, because He came. All our imperfect celebrations are for him. A holiday so wonderful that we share it with everyone. The green and red decorations and the blinking holiday lights, the reindeer and elves and snowmen, the trees decorated- in each house uniquely representative of the family- it all serves as a joyful but decidedly human backdrop to celebrate the birth this divine child.

Still through the cloven skies they come
With peaceful wings unfurled
And still their heavenly music floats
O'er all the weary world;
Above its sad and lowly plains
They bend on hovering wing.
And ever o'er its Babel sounds
The blessed angels sing.