I got one of those awful phone calls yesterday. Remember a year ago when we lost our secondary insurance and because of that we lost nursing for several months? Yesterday Our nursing agency called to inform me that they had not yet received payment for the month of June last year. I wanted to scream, but I calmly asked, why is this the first time I am hearing about this? I didn't scream. In fact, I made the nice man on the other end of the phone laugh sympathetically. If only sympathy paid the bills.

So, I was irritable at dinnertime. My sweetheart daughter decided to make dinner, and hubby supervised. So, I was off the hook. Lily made chicken Macanicken (her recipe). She is the best six year old chef I know. It was really an impressive meal. I threw together some Strawberry shortcake, because it is still May after all. I checked the cake when the timer went off and decided it needed another two minutes. Lily and I had made hot lemon and strawberry syrup with fresh strawberries- the house smelled amazing. Two minutes later I went into the kitchen, but before I got the stove there was a very loud POP! I was not looking at the stove, but I thought I saw a flash out of the corner of my eye. The oven and stove had turned off. Dear hubby, after making sure nothing was on fire, went to the shed to check the breaker. It had not flipped. The stove is the only thing on that breaker, so he flipped it off. We are all trying to stay calm. But Becca kept plodding into the kitchen, and I really wanted her out until we knew what had happened. Finally I asked her, "What is wrong?" "I need a potty change." Which is Becca code for, diaper time.

To her credit, she had stayed calm, and it was the kind of diaper that would set off a lesser toddler. I think I'll keep her.

"OK. I'll be in in a minute. Wait for me in the living room." And off she went, pitter-patter. Toddler scurrying is really cute. I turned back to Josh so we could make a plan regarding the stove, when, "THUMP!"

"Mom!! Sarah fell!"

Sarah had been sitting on the floor. When I came into the room, she was on her back with a growing bump on her forehead. I don't know. Physics are not universal. Ask any toddler anywhere.

So, I am comforting Sarah and peering intently into her eyes and checking for any neuro signs when Becca reminds me that she is in need of attention. So, I ask Josh to handle the mini and her mess when suddenly we realize, we are out of diapers. Not low. Not down to the last one. We are out.

(Poor Becca) So, as soon as we are reasonably sure there was not an imminent 911 call, he scooted out the door to go buy diapers.

It was *that* kind of a day.

Here is the thing. Since I was asked to participate on that panel, I had to go back and read some of my earlier blog posts. The four years since I started writing have felt like a blur, but I have changed. My perspective has changed. My tone has changed. Yesterday, I was wondering if I could reclaim my earlier optimism. I know more- can I still face it, trusting God?

I don't know. But I'm singing again.

"No storm can shake my inmost calm, while too that rock I'm clinging!
Since love is Lord of Heaven and Earth, how can I keep from singing?"

I participated in a panel on the dignity of life last night. I was humbled by my company and by the topic. This was my talk:

I have to be honest, I had some trouble preparing for this. Writing is what I do. It is how I work through difficulties. It is how I sort my thoughts and face my fears. The past four years have not been easy for me or my family. I was trying to muddle through why I could not find the right words when I realized that I had been trying tell two intertwined stories as one. My story is about being the parent of a child with special needs. My story is about facing medical decisions and fears. Her story is different. Hers is about living in a world which devalues her. As her advocate, a big part of my job is to assert and reassert her dignity. The pains, the medical decisions, the sacrifices, the toll it all can take on my family- independently, they are hard to value. But the lens we use to understand them is the dignity, the inherent beauty and worth of an incredible kid.

I found out I was pregnant the same way I always find out. I had the flu. When it got so bad that I was dehydrated, I went to the doctor expecting to get an IV. They wanted to do a pregnancy test, but of course, I was dehydrated. So, they stuck an IV in and made me take a pregnancy test.

It wasn’t the flu.

I went home and wrote about Perfect Joy. In one of my favorite books, The Little Flowers of St. Francis, there is a chapter about Perfect Joy. St. Francis is teaching Brother Leo. He talks about the joy of giving, the joy of healing, the joy of knowledge. But he says that perfect joy can only be found in suffering.

The first time I wrote about my daughter Sarah, it was a simple meditation.  It was an easy and happy meditation. I felt miserable, but I was joyful. Joy is not isolated from pain.  There is peace in the knowledge of Christ's love for us.  There is joy in each and every suffering which we lay at his feet.

[It was my second child, and with the first everything had gone smoothly and relatively easily. So, I thought I knew what to expect. I was very excited when it was finally time to do the first ultrasound, at about eighteen weeks. The tech who did the ultrasound was quiet, but I didn’t know her. Maybe it was her personality?

My doctor called me in for a follow-up to the ultrasound. Surprised, but not alarmed, we went in. Something was wrong. He wouldn’t tell me what. He said we needed a specialist to do more in depth imaging, but he wouldn’t tell me why. I did not know what he was looking at.]

So, we made an appointment and saw a specialist. I don’t know what I expected. My mom was with me. The doctor was in the room and a tech was using a sonogram. For about an hour, they murmured at each other and measured inexplicable things on the screen. They looked concerned and ignored me and my questions. It was awful. I was glad I was not alone because it was about to get worse.

When he finally deigned to speak with me, the doctor explained that he thought it was a Chromosomal disorder called trisomy 18. He could do a test, but if he was right, we would want to abort. He said it might not be trisomy 18, but some other awful disorder, in which case we should abort. He could do all kinds of tests and get all kinds of information and he didn’t want to push me into anything, but really it didn’t matter. We should abort the pregnancy.

I don’t think he was trying to hurt me. I don’t think he had any idea how much he had. How could he know I already loved her?

Our world can be really harsh with pregnant women. I mean, most of the time, a pregnant woman can expect people to give up seats and open doors and that’s nice. The world hasn’t met our babies yet, but we are already getting to know them. People are startled when women grieve miscarriage.

I flashed quickly back to my first pregnancy and my first mother’s day. I was visibly pregnant- about seven months along- and after Church I went to get my carnation. The man handing them out smiled and handed me one and he joked, “close enough.” Close enough? It was innocent, but it hurt. I was not “close” to being a mom. I was a mom! Everything had already shifted. My life, my body, my relationships, my world- everything.

Now, again, a man observing my unborn baby saw something other than what I felt. I don’t know what, but he did not see a child.

We did get the tests done, with another doctor. And Sarah does not have trisomy 18, she has Apert syndrome. I told that doctor at the outset that abortion was off the table, and he was respectful.

When Sarah was born we knew she was going to need help. I had done two fetal MRI’s, weekly sonograms, and a smattering of other tests. We had already met with a team of doctors at Children’s hospital, including a plastic surgeon, a neurosurgeon, a geneticist, a radiologist and a genetic counselor. I delivered at a hospital in DC which we chose because it was close to Children’s hospital. There was a respiratory team on hand, which was good because she turned blue and was quickly intubated and resuscitated.  As soon as she was stable she was whisked away to the NICU at Children’s.

The first time we almost lost Sarah was only a few days later, while she was in the NICU. The team was worried about Sarah’s heart, her lungs, her kidneys, and her liver. She needed a surgery right away to relieve pressure on her brain, which was already damaged, but they were not confident she was stable enough to go to the OR. They recommended we make our peace and let her go. We called our pastor, who came to the hospital to baptize her, and we decided we would not do any more intervention. We would not take her off the vent and we would not stop feeding her, but we would not send her down to surgery either. We were heartbroken and scared. We prayed harder than I can ever remember praying. We didn’t always have words, and for the first time, the charismatic prayer that sounds like gibberish made sense to me. It isn’t what I did, but it made sense. He is listening, and he knows and I don’t have words, but he still hears.

Sarah did get better. She was able to go in for surgery that week. And I should skip ahead or we’ll be here all night. Sarah’s medical record is not short. There have been dozens of miracles, and that was the first.

Now, Sarah is three years old. It is true that she has nearly died several times. She has been on two emergent helicopter rides. Her medical chart reads, “Chronic respiratory failure.” I have lost count of her surgeries. I know the medics who show up in ambulances. I know the ER and the Pediatric ICU. Once, I showed up the ER and the triage nurse recognized me and waved me through without even asking what was wrong.

As Sarah’s mom, I have learned a lot of things. I know more about hospitals and medicine than I ever cared to know. There are a lot of machines and numbers and measurements and medicines. But at the end of the day, she is just a kid. A sweet three year old, chasing her sisters and snuggling and throwing tantrums.

Society wants to ask about value. They want to talk about productivity. What does she have to offer?

Do you remember the pictures a few years ago of Pope Francis hugging a kid who had cerebral palsy? It was a beautiful picture, it played well on both secular and religious media. Do you remember what the boy’s father said? He said, “He is here to show us how to love.”


We like to talk about love and make movies about love. We make life decisions based on love. But what is love? What does it look like? How does it act? On the cross, we have a perfect example and the Bible tells us to follow that example. What does it mean?

 I don’t know the answer. That’s a big question. But I can point.

Being in public with Sarah means facing a potentially unfriendly crowd. You hear stories about bullying- in my circles nearly everyone has an ugly story and advice about how to respond. This is one of our hardest realities. The one and only thing I ever wrote that went viral addressed this. How should people react when they see someone who is visibly different? I was addressing parents about kids, so I presumed innocence. It resonated. First, all my friends who have children with special needs shared it. Then I saw it popping up in other places. My friends would tag me when they saw it. Finally, Yahoo picked it up, and for a day on the Yahoo header there was a picture of my kids linking to a story I had written. My blog went from counting page views in tens to tens of thousands. What I said was pretty simple, but it resonated. Differences are not as troubling as you think. Kids will get over it quickly, if you let them. Ask questions. Say hello. Let children ask uncomfortable questions. If you don’t the questions don’t go away, they just reform as unchecked biases. Here at St. Paul’s, I have to say, the community is awesome. There are not a lot of places I can go without some level of fear, or without working up the energy to decide to respond in a positive way to negative reactions. This is one of them. I expect smiles and hugs and warmth. I expect people to talk to Sarah. I see love, not fear, in the eyes of strangers.

I don’t want to answer questions about quantitative value, but it isn’t because I am worried about my daughter. The asker, inevitably, cannot measure up. What does she have to offer? Hope. Inspiration. She is here to teach us how to love. She is here to teach us about joy.

This episode of Mommy wars is brought to you by Swiffer Wetjet

I have a friend who runs an online housekeeping magazine.  It is great fun.  (Seriously. You should check it out!) I have written for her before, but sometimes I wonder if my posts belong.  I mean, if any of you actually saw my house, you would not want my advice about keeping house.

What is real housekeeping?  There are all kinds of posts. Gardening. Kids. Cleaning. Finances. Crunchy advice. I laugh. I learn. And every once in awhile, I judge.  (Don't tell. They'll kick me out!)  That's real??  People do that?

I went to a dinner party a few years ago.  As sometimes happens, before sitting down to the meal, the men and the women gathered separately to chat. The women collected in the kitchen. I don't want to get too bogged down on the obvious gender issues here, but the subject up for discussion was floor cleaning.

Woman #1: I always get on my hands and knees and scrub. There just isn't any other way.
Woman #2: I know! Right? Me too.  If you aren't on the floor you don't see all the dirt. It is gross!
Me: Are you kidding me?  Liars! If you literally have to get on your hands and knees to scrub the floor, your standards are too high or you have a stupid floor.  Maybe both.

I didn't really say that.  I'm polite and I bit my tongue. Really hard. I might have bled a little. I smiled and I let them believe that I approved of their insanity. I was tempted to share my own kitchen floor cleaning method, which employs a once over with the vacuum and then a quick Swiffer, but there was more emotion than generally belongs in a floor cleaning discussion. Was I prepared to defend my objectively inferior standards?

I am now.

This conversation has replayed in my mind often.  It was a dinner party with folks I did not know well.  I was barely vested in the conversation at the time.  Still it comes to mind about once a month. Once, maybe twice a month, when I am on my stupid hands and knees scrubbing my stupid floor.

I still don't have compulsive standards.  You can eat off the floor in my kitchen if, and only if, you would also eat off the bottom of your shoe.  That's OK with me.  We don't eat on the floor. The floor in the kitchen is linoleum. It is one of those bland tile-like patterns that hide dirt well. And that, my friends, is the beginning and the end of what we like about that floor.

The rest of the house is carpeted.  We bought the house with dreams of hardwood that fluttered away like autumn leaves. Wait. No. Autumn leaves don't flutter away.  They make their way into my house to be crumpled and crushed into my carpet.

I could do some things better, I suppose. I could insist that people remove shoes, for instance. But I don't want to remove my shoes and besides, then there would be a perpetual clutter pile close to the front door. I'd hate that! I don't have a house big enough for that to be out of the way. There are also things I definitely cannot change. For instance, Sarah is going to come in and out of the house in a wheelchair. If she is not taking off her wheels, I'm not taking off my shoes.

I have three kids. A six year old, a three year old, and a one year old. We have all the normal kid stuff happening. (Tell me again, how we get juice out of the carpet? Where did this tomato sauce come from? WHAT DO YOU MEAN SHE TOOK HER DIAPER OFF?)

We also have some, um, other than normal messes. One of my kids has a feeding pump. The mechanism is simple. You tell the clever little box how much food to give and at what rate, and it pumps it through her feeding tube into her belly. Except it really isn't a clever box. You see, the pump does not know when the child has disconnected her tube. Notice quickly. Because the not so clever little box will continue to pump Pediasure. And your child, being the delightful child she is and relatively newly mobile, will drag this dribbling, squirty mess all over the house. Why, you ask? Why do three year olds do anything?  Messes are fun! This is a mess you will not forget. It won't happen again. Or a third time. It definitely won't happen so often you lose count of how often it has happened.

I had a couple people in the house to do a health assessment.  (On the kid, not the house.) One remarked on how clean my carpet was.  Was it new? Oh, how I laughed. Then I thought... maybe I am qualified to write for real housekeeping!

Wouldn't you like to know how I keep my carpet so fresh and pretty, so long as you visit on the right day?

I spot clean, of course. I mean, what kind of person would leave a coffee stain on the carpet for several weeks? Not I, said someone with higher standards than I.

About once a month I have to drag out the carpet cleaner. I get down on the floor with soap and and a toothbrush and I scrub. And, here is the secret, I really, really enjoy it. It is quiet mind time. The vacuum is blaring, so I cannot hear anything. (Which means I only do it when someone else is responsible for the kids.) It is just me, white noise, a mindless task and my windy mess of a tangled mind.

I have tried all kinds of things to keep up with my carpets. Windex worked for me for most things most of the time, but once I used a generic which left a blue stain. I tolerated the expensive, specially purchased rug cleaner for awhile, even though the smell of it made me ill and took hours to air out. I have used laundry detergent with some success, but not on all my stains. Peroxide works pretty well on a lot. None of these things work on a turmeric stain. (What, you don' t have turmeric stains?)

The working method
Prep: I dilute dish soap for stubborn stains in a spray bottle and I fill the tank of my carpet cleaner with hot water and several drops of lavender essential oil. I find an old toothbrush and I don my favorite elbow length gloves.

Sometimes, I do the whole carpet with the lavender water. It is just like a vacuum, only it is heavier and it smells nice. Then I go after the stubborn spots. Sometimes I skip straight to the spots; the rest of the carpet is clean enough. This method has worked on every manner of disgusting soil. I spray soak the spot with soapy water and I scrub it with the toothbrush. Then, with the hand attachment, I vacuum up the soapy water and rinse the spot with lavender water. That usually does the trick. Once in a blue moon, I have to repeat the process. Coffee and Pediasure stains are very common, and I am delighted to share that both will come up with just lavender water. Even if they are a week old, not that I would know that.

I am pretty well settled on this method, and I won't change it up unless I encounter a stain I can't remove. This one has everything I want. It is easy(ish). It is cheap. There are no single use special purchases. It's a winner.

Lavender oil is magic. There are three pros, and one con.
1. It is antimicrobial. Can't hurt, right?
2. I do not entirely understand why, but with every other cleaner I used, it was a chore to clean the dirty water tank. There was always a funky sludge at the bottom. With the lavender water, I dump it out and the tank looks fresh and clean. Nothing to clean. Weird. I rinse it anyway- but it is still easier!
3. You know the musty smell that emanates from carpet cleaners? Gone. Relaxing, wonderful lavender wafting in its place. And not just when I am using it, but when I turn it on the next time. There is no smell at all until I start spraying the lavender water.

The caution: essential oils and plastic do not get along. You cannot leave the lavender oil in the tank, and you might consider rinsing the hosing with just fresh water. I dump some fresh water on the linoleum floor and vacuum it up. I have not had any issues. I can pretty much guarantee that your carpet cleaner user manual has some instruction about using only their brand of detergents. It is not crazy- some cleaners break down plastics and there are small bits which have to keep working. I ignore it anyway, but I rinse.

I have used other oils, but lavender is far and away my favorite. I use a pretty inexpensive brand from Amazon for this purpose.

So, that is how I clean my carpet. I get on the floor and I scrub. Don't judge me.

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.