It is almost @)!^. No, I mean 2016.

A letter to myself in 2016

Dear me,

Its me. I know you think you know better because you're older and all, but I've got some things to tell you. It's important. Listen up.

It is going to be a tough year. How do I know? Well, I guess I don't. What I know is that every year you get all teary and nostalgic and you look back at think, man. This was a tough year. It is always a tough year if that is how you want to focus. Don't. Dig a little and find your inner optimist. She's still in there. 

Forgive yourself, but don't give yourself permission to screw up. You will do plenty of screwing up without deciding that it is OK. It isn't. Be better. Do better.

The internet is your echo chamber, not your conscience. You can pop online and find people saying whatever you want to hear. You want to read about why guns are bad? Ask Google why guns are bad. You want to read about why they are good? Ask Google why they are good. You want to know if guns are good or bad? Consult your conscience. 

You can go online and find a million people telling you that whatever you are doing or have done is OK. Maybe it is. I don't know. But if you are wondering, your conscience is bugging you. Stop doing it. Apologize. 

Love openly. Don't assume people know. Tell them often. You need to hear it. They need to hear it. Words have power. 

Words are not everything. Act with love. Give more. Do more. Love more. No excuses. 

You can probably convince most people that you are doing the best you can. You are not most people and you will not be convinced unless it is true. Make it true. Your people deserve the best you there is. You deserve the best you there is. 

Pray more. When you are having a hard day, pray. When you are happy, pray. When you don't want to forgive, pray. When you don't know what to do, pray. When you don't want to pray, pray harder.

Oh, and that thing about forgiving yourself? I meant it. 

Merry Christmas, Leesburg!

Sarah is beautiful and unique. About a week ago, someone stole a picture of her in the hospital from a post I had written for the disability community website, The Mighty.

So, I was a little worried about going out in a big crowd with Sarah. It's not like we've never done it before. We go out all the time. But after last week's reminder that people can be awful, I was anxious.
But my other daughter, Lily, was in a parade. And my family was coming from out of state to see Lily in the parade. So we couldn't just blow it off. There was no way around it; we were going.

As we were walking up the sidewalk toward the parade route, a little girl ahead of us kept turning around and looking hard at Sarah then whispering something urgent to her mom. It happened several times and my hackles started to go up. Kids can be cruel and parents rarely know how to react. Finally her mom stopped and turned around and said, "I'm sorry. Is this Sarah?" That sweet girl remembered Sarah from a visit to the play area at the mall. And she remembered her name. She just wanted to say hello to her friend.

We found prime parade watching real estate in front of a beautiful house on King Street and we sat down and waited for the revelry to begin. The kids were excited. Our group had several cousins huddled and giggling on the curb.

Finally the parade came! Fire trucks with lights flashing! And... Sarah was crying. Bawling. Because of her medical condition, she has a history with emergency vehicles. She thought they were coming to pick her up.  She's signing, "All done! All done!" I put her in her wheelchair, wondering if she was just going to miss the whole parade.

The lady next to me offered Sarah her necklace but Sarah wouldn't be distracted with beautiful gifts. The lady said that this was her house and if we need to step away, we could use her driveway. So, I moved to the driveway and Sarah, sweet Sarah, calmed down. The friendly lady came back. If we needed anything, please tell her. We could sit on the porch or watch from the window or even if we just need a bathroom or something to drink, to please just ask. I could have hugged her.

Eventually Sarah was drawn in by the floats in the parade, so we brought her back to the street, but still in her chair for a quick escape if necessary. We were close, but not in the middle of her throng of cousins. A little girl on the other side noticed that since Sarah was in a chair she couldn't scramble for the candy which was being tossed to the bystanders. So, she scrambled and collected for Sarah. Every time. Even though it meant less candy for her. Yup. I saw a small child give up candy willingly and of her own volition to make sure that my daughter was included.

But then a tow truck came by with flashing lights and Sarah was upset again. It was nearly the end of the parade and she was really unhappy this time, so I decided it was time to just leave. I couldn't get up sidewalk because the crowd was too thick. We were toward the end of the parade route though, so the floats were not evenly spaced anymore and there was a bit of a lull. I just walked up the road.  We were not in the middle; if a float had come there was plenty of room. But we were walking on a parade route past people enjoying a parade. So, they waved and wished Sarah, "Merry Christmas." And with all the regality my tired sweetheart could muster, she waved back.

It was like a hug from the town. And we needed it. Thank you, Leesburg. You're awesome.

Battle lines and battle scars

Every topic worth discussing has at least two sides.

When I started blogging it was mostly an plea for help and support. My daughter was born with a rare genetic syndrome. I had never heard of it. My husband had never heard of it. We were lost. Sarah did not breathe. She turned blue and was whisked out of the labor and delivery room while I was being stitched up. My husband was torn between being with his scared wife on the operating table and rushing to follow his new daughter to the NICU of another hospital. 

Sarah spent her first three months in the NICU. I moved in with her. For three months, we shared that small room. She was intubated and tube fed. I was pumping breast milk. Mom's cope in different ways and that was how I coped. I couldn't do much. For awhile, I couldn't even change her diaper. But I had to do something. I was her mom. So I set an alarm and pumped every three hours, even through the night. I was desperate to keep up my supply; that was what I could do. I was not feeding her or changing her clothes and diapers. I was not snuggling her and burping her. All the things you do for your newborn, I could not do. But this one small thing, I could do. So I did. 

I tried to be aware of her non-physical needs. I would sing to her and read to her. I hung a black and white mobile over her NICU crib. I asked for nurses who were more comfortable with intubated babies, and I would hold her for as long as I could. I stroked her face and I learned infant massage. 

I plunged in and learned all the medical terms. I participated in morning and evening rounds. I asked every single person who came into the room the same list of questions. They didn't always know, but I would keep asking until I thought I understood. I avoided Dr. Google, who insisted my daughter wasn't going to make it out of the NICU.

I prayed. I prayed a lot. I begged everyone I knew and some people I didn't know for prayer. I started writing updates on a blog. I would explain the medical setbacks and difficulties and triumphs. That is how my mommy blog started. I write about my faith and my family. 

Eventually, I did find a community where I could talk about Apert syndrome without explaining everything. (Yes, it is genetic. No, neither my husband nor I have it. Yes, Sarah could pass it on. No, I don't understand random mutation.) Apert USA is a triumph of support and hope. A decade or more ahead of me, a family had looked for community and not finding it, they built it. This online community became a lifeline. What do I do? What can I expect? Why aren't her teeth growing yet? The community was a mix of parents of kids with Apert syndrome and adults living with Apert syndrome. Because the syndrome is rare, the community would not be possible without the internet.

Through the years, I have received a few gentle scoldings. "Beth, we don't say 'Apert's' we say 'Apert syndrome.'" Using the correct terms when we are talking about something most people have never heard of matters, even if it is a few extra keystrokes. As soon as it was said, it was obvious. One concern was not aimed at me personally, but it applied to me. One of the adults wondered if we would write the same things in the same way if we thought our children were going to read it. 

That stung a bit. I love my daughter. Would my writing hurt her? 

That was about two years ago. I have since found friendship with the person who delivered the criticism. I love her humor. I love her photography. And, except in the context of telling this story, I usually forget that she has a genetic syndrome. My daughter's genetic syndrome. The one I write about all the time. I want that for Sarah.

When I write now, I write with the expectation that my daughter will read it. I don't know if she will; that will be up to her. But I write keeping in mind an adult Sarah looking back. 

Yesterday one of my favorite places on the internet, The Mighty, blew up. What started as an accusation of ableism and dehumanization, deteriorated quickly into a full blown noisy battle. This particular battle began with a post which some found offensive and some found helpful. I didn't see it so I won't speak to that except to note that the the reaction of The Mighty was quick and appropriate. An apology. It wasn't perfect, but it was right. 

When someone tells you that they are offended by something you have said or done, there is only one right response. You say, "I'm sorry." You can say you did not intend to offend, but only if you've already made a genuine apology. You don't get to argue that they shouldn't have been offended. 

Anyway, it was too late. The infighting had already begun. Adults with disabilities were yelling at moms and caregivers. The objections were rational and real, but the delivery was aggressive, by design. They went on the offense accusing. As a mom and a mommy blogger, I was personally attacked. 

I understand the anger. 

About a week ago, I became aware that one of my pictures had been stolen. It was a darling picture of my sweet girl using suction to clean her doll's nose. Our normal is not normal. Someone was using this picture to boost their click count. It seemed innocuous enough- it was one of those, "type amen to pray" posts. But it wasn't. It was an invasion. It was offensive. My daughter is not your clickbait. My daughter is not your sob story. She is not my clickbait or sob story either. My daughter is a person. Using her is contemptible. 

The battle lines looked neat. Mommy bloggers versus adults with disabilities. Clean lines are useful in battles. Everyone knows where everyone stands. Don't shoot your allies. 

In reality, though, the lines are far less rigid. When you take fire from both sides that fact becomes painfully clear. And you must stop shooting! 

I'm a mom. I love my daughter. I am her advocate and her caregiver. I welcome the criticism of people who understand, in some ways better than I can, what she is going through. 

I am also a human. The surgeries and painful battles have taken their toll on me too. Her story and my story are, for the moment, impossibly entwined. I can't leave the vines on the ground or cut them apart. We are growing together. We are aiming for her independence, so if you perceive me getting in her way I certainly want to know. I can move. For the moment though, I am the stronger vine. Without me, she falls. Don't cut me down.

Mom blogs are not unimportant or trivial. We aren't looking for validation, we are looking for support. We aren't trying to throw our kids or anyone else under the bus. We need hope. We need advice. We need strength. We need community. Our kids need everything we have and often much more. 

When moms raise awareness or ask for help, are we just whining? When we complain that it is hard, are we hurting their children? When we find inspiration and share it, is that inspiporn? When we admit publicly the very real consequences and difficulties of parenting a child with special needs, are we betraying our kids? Many of us have PTSD. Many of us struggle with anxiety. Are we allowed to talk about that? Before you consider an answer, I'd argue that there isn't a real answer. There are perspectives which are sometimes both true and mutually exclusive. 

My voice is not universal. My voice is not impeccable. My voice is the voice a flawed human with a unique experience and perspective. My voice found a home on The Mighty, right alongside other voices which said opposite things. That is a wonderful place to begin a discussion. We are natural allies, if we want to be. 

Progress means looking forward with love and respect. It doesn't mean shutting up. It means listening generously. 

Prayer shamed

One of the first things I figured out when I started exploring the world of a special needs parent was that I disagree with everyone.

Not really. I already knew that. 

Before I was immersed, I guess I imagined a cohesive voice. Anytime I read a blog or an article, it was a voice of authority. But it is just like any other community. We are diverse. We don't agree about everything. We argue about all kinds of things. We argue about treatments. We argue about priorities. We argue about language. 

One disagreement took me by surprise. I read a blog post that complained about prayer. Every time she told the world that something bad was happening, people responded by telling her that they would pray. I have since read the same post in several voices from several places. Don't just pray!

Once, I was scolded for telling people to pray for their friends in one of my more popular posts . Not everyone prays. Not everyone believes in God. Maybe people should just offer good wishes? 

Now in the wake of yet another gun tragedy people want answers. People want action. People are angry. "Don't just pray!" 

Just. There it is. That little word. 

When Sarah was born the prognosis was bad. Really bad. We had met with all kinds of specialists prenatally and we'd gotten all kinds of imaging, but when she was born it was worse than we'd anticipated. She didn't breathe. Her heart was enlarged. Her blood pressure was too high. Her brain was under pressure. I forget why, but in the first days, they were worried about billiary atresia. Heart. Lungs. Kidneys. Liver. Brain. She needed surgery to relieve pressure on her brain, which was already damaged, but the ICU team was not confident she would make it to the OR. So I cried. And I prayed. My husband and I begged everyone we knew and a lot of people we didn't know for prayer. We didn't know what to do. 

The NICU team advised us to let her go peacefully. She was on a vent and being fed through a tube and it seemed she would get worse not better. We decided that we would not turn off the vent, but we wouldn't intervene further either. We cried more. We prayed. We had her baptized. 

There was a miscommunication and a neurosurgeon got the message that we were ready to go ahead with surgery. They surgery she needed but wouldn't survive. I'll never forget his face when he came into the room. He could do this surgery. He would do this surgery. It was a huge deal, but he could do it. And just like that, we made the choice. And just like that, we experienced an inexplicable peace. We felt God. It was a long surgery. We sat all day in that waiting room. And we felt peace. We felt the comfort of God's presence. We felt the warm embrace of community. We felt the power of prayer. 

When I ask for prayer it is because I believe in a loving, listening, powerful God. I am grateful for good wishes and good thoughts and warm messages from people who don't pray. That helps too. When things are hard, it is good to feel the embrace of community. But I ask for prayer. 

On the one hand, scripture is pretty clear on the subject of living faith. We can't sit on our hands when there is work to be done. We are supposed to let God work through us. There is just enough truth in the cry to make it sting. "Don't just pray!"

On the other hand, it is entirely bizarre. Don't just consult with the all-knowing Lord. Don't just ask the almighty King of Kings for help. Don't just go to the Father for comfort. Don't just beg the Prince of Peace for peace and consolation. Don't just speak to the Word Incarnate. Don't just. 

"For in him our hearts rejoice;
in his holy name we trust.
May your mercy, Lord, be upon us;
as we put our hope in you." Psalms 33:21-22

 Prayer is not impotent. Prayer is not the religious equivalent of thinking positive thoughts. Prayer is action. Sometimes it is the only thing we know how to do. (God listens and helps with that.) When we pray we are talking to the Creator, the King, the Shepherd. We are talking to our Father, who knows our hearts and our difficulties. Prayer is the most important thing we do each day. Prayer is powerful action.

Whatever else I do, I am going to pray first to God, who listens and answers in love.

Tonight I am praying. Just praying. 

Advent prep

I always struggle during Advent.

During Advent I imagine cutting and polishing a beautiful stone. With soft sweet hymns and hopeful prayers, prophesies and scripture. I imagine that it is my job to capture and magnify light. I imagine holding the stone carefully, looking for imperfections.

But when I hold it to the light, still off in the distance, but coming, a thousand flashlights are pointing at me. These pale imitations are annoying. Worse, they are distracting and blinding. And sometimes I drop the stone and it gets all scraped up.

I love Christmas. I love Advent because it sets up Christmas. I need time to prepare. I need time to get ready. I need Advent.

Last year when I put away the Christmas stuff, I packed the Advent stuff in a separate box. This might seem obvious, but it was the first time it had occurred to me. While the Christmas stuff was lugged all the way up the ladder into the barely accessible attic, the Advent box was tucked on the top shelf of my closet. This year I thought I would be ready.

On Sunday I was at my mom's house, so Monday was the first day we were home this Advent. I brought down my box and realized I wasn't ready after all. I had not bought candles. I had not bought a calendar. My thoughtfully packed boxed was filled with two advent wreaths, a half finished felt Jesse tree project, and the Elf on the Shelf. I didn't even have purple ribbon or a door wreath.  I usually use a pink table cloth with a purple runner. Neither is really seasonal or if they are they are meant for Spring, not Winter. Of course, they were not in my box. Not in my box means probably in the house, but we are not finding them today. So, I set the table with a solid pink bed sheet and a scrap of purple fabric, unhemmed. I had the wreath, sensible stored, and I filled it with half used candles from previous years.

I am not ready for Christmas. I am not even ready for Advent. I've got my Pinterest perfect ideas so tangled that I am not ready to get ready. I am too busy resisting the secular caricature of the coming Holy day to experience these holy days.

Life is not a series of Instagram moments. It isn't always picture perfect and it isn't supposed to be.

As a culture, we're not big on waiting. We want instant everything. Instant food. Instant TV. Instant communication and instant responses. We want it all right now.

Without Christ, Christmas is empty. Advent is the season when we prepare for Christ, but not just in Christmas. He is coming back! Advent is special. Advent says there is value in waiting. There is value in mindful preparation. This moment is important in a way which will be missed on film. This moment might be missed altogether. Quiet, contemplative, deliberate, open, aware.

We won't find perfect. We might find glimpses of perfection. We might even capture an illusion in a picture. But until he comes again in glory, it is an goal or an illusion. Life is messy, each and every day. Whatever you are doing, offer it to Him. He doesn't need the world's cutest Christmas card. He needs you. Slow down.

Christmas is coming! Christ is coming! Prepare!

In all the chaos, God speaks in a gentle whisper. Make room for the quiet. Or all the preparations are nothing.

"I wait for the Lord,
my soul waits
and I hope for his word." Psalms 130:5

Hope

Paris was attacked. For a brief moment, the world was shocked into prayer and solidarity. Facebook even gave people the option to overlay the French flag on our profile pictures. Everyone had something to say, but no one really knew what to say. For the very briefest moment, there was an appearance of unity.

The moment is over. Refugee camps are set ablaze. Mosques are attacked. There are petitions to the government to refuse refugees. Some state governors are pretending they have the authority to block refugees from their states. Rage is boiling. Religious bigotry is flourishing. Fear is pervasively slinking and slithering. 

This is my country, the land of the free and the home of the brave. This is my country, where we insist that all men are created equal. This is my country; freedom of religion is entrenched. 

Our very foundation is being challenged. I still have hope. We will not turn our backs on these people in need. We will not apply a religious litmus test. We will not isolate, humiliate, and attack them. We will feed the hungry, clothe the naked, and welcome the stranger. We will. 

Daesh wants to drive the narrative. They want to be what you picture when you think about Muslims. That's why they want to be called The Islamic State, as though theirs is the one true iteration of the faith. They preach that Islam cannot exist in the our culture. They encourage tension because that is their story. We hate them. They hate us. That is their story. 

It is not ours. Our story is more powerful. 

As a nation we insist that people are free to worship as they choose, or not at all. We insist that freedom of religion is a fundamental human right. As a nation we welcome Muslims. 

As a Church, we insist that freedom and grace are linked. We know that true Christian evangelism is offered in love. We know that no one is beyond redemption. We know that the call to help people in need is not optional and it doesn't have qualifiers.

"Then he will say to those on his left, ‘Depart from me, you accursed, into the eternal fire prepared for the devil and his angels. For I was hungry and you gave me no food, I was thirsty and you gave me no drink, a stranger and you gave me no welcome, naked and you gave me no clothing, ill and in prison, and you did not care for me.’ Then they will answer and say, ‘Lord, when did we see you hungry or thirsty or a stranger or naked or ill or in prison, and not minister to your needs?’ He will answer them, ‘Amen, I say to you, what you did not do for one of these least ones, you did not do for me.’ And these will go off to eternal punishment, but the righteous to eternal life.”" Matthew 25:41-46

All through the gospels Jesus preaches forgiveness. These harsh words stand out. There will be people damned who thought they were doing OK. People who thought they were doing well will go to Hell. And it isn't for those genital sins that dominate every moral discussion. They will be damned for ignoring those in need. They will be damned for not looking for the face of God.

We cannot be confused. Even if we assume the worst possible scenario, and I don't think we should, we still have to help the refugees. We cannot decide we shouldn't help people just because some big, bad, scary monster says we shouldn't. We are not cowards.

Of course we should vet people. And of course we shouldn't ignore the threats from Daesh. They really do hate us. For evidence of how they treat people, look to the Muslims pouring out of Syria. The people looking to us for help. These are people hoping that Daesh lied about us, as they know Daesh lied about them. They already know Daesh is not representing their faith truly. 

We can and do vet refugees. Terrorists wanting entry are better off finding isolated and angry people already here, and they know it. The lies that they are going to get in with the refugees are just another way to wedge Muslims and the West. That's why the passport was planted. That's their story. That's how they grow and thrive. We must not help spread their rage and terror. 

"841 The Church's relationship with the Muslims. "The plan of salvation also includes those who acknowledge the Creator, in the first place amongst whom are the Muslims; these profess to hold the faith of Abraham, and together with us they adore the one, merciful God, mankind's judge on the last day."" Catholic Catechism

We have an obligation as a nation. We have an obligation as Christians. We will help. We have to. We are looking at Christ. 

"Our job is to love others without stopping to inquire whether or not they are worthy." Thomas Merton

Don't Curse at me for Looking for a Hope you think is Hopeless

I am setting aside a half dozen obligations. This post is jumping in line. I can't keep it in my head because it is making me cranky.

Last night one of my friends posted a link to a writer I had never heard of. I read it because I love her. Today, they same post was posted by several more of my friends. It covers painful ground which is universally relevant.  Death. Sickness. Grief. Tim Lawrence wants you to know that "Everything doesn't happen for a reason."

I don't know Tim Lawrence. I didn't look him up. I don't know his history or his credential. And honestly, I can't even confront his main premise directly. When I read it, it rubbed me the wrong way, but I couldn't quite put my finger on why. He curses a lot, which appeals to some people. I think it dulls his point, but that wasn't really what was bothering me. Lots of my favorite people swear like sailors. It was still bothering my memory this morning, so I reread it and the problem smacked me in the face.

He writes from an authoritative perspective. He writes down at me, not to me. He is not offering a hand or a help, he is spitting fire. He preaches with all the sanctimonious arrogance of a televangelist, but what he is preaching?

He wants you to stop comforting people with platitudes. He wants you to stop pretending everything is going to be OK. He wants you to allow your loved ones to grieve.

It all sounds great. What is bothering me isn't the way he describes his knowledge and experience of grief. It's that he won't allow me to describe mine. Apparently, the way I cope is "categorically untrue" and "bullshit" and "needs to be annihilated." He doesn't just want to be allowed to grieve in his way. He is telling me how to grieve too.

That is one problem. Here is the other. He has two categories of people: the grieving and everyone else. That sounds sane, except that no one escapes grief. No one. So, while he is firing the wrath of the grieving against their inadequate comforters, part of his onslaught misses the mark, because there aren't really two categories. There is only one. We have to switch back and forth from one side to the other. He only mentions empathy once, and it is to inform you, dear reader, that his own troubles have made him more empathetic.

It is very angry reading. Apparently, it resonates with a lot of people. I am glad he has found his way. I hope he is surrounded with good friends who give him what he needs to get through every difficulty. What he asks for is acknowledgement of the pain.

The thing is, when someone says, "Everything happens for a reason," maybe they meant you should look backward and figure out why it happened. Maybe. That would be a weird thing to say, and contrary to most experience, but maybe. Or, maybe they meant to help you look forward in hope. Look for the phoenix.

And maybe the friends who tell you to "take responsibility" mean that you screwed up in some awful way and that is why this awful thing happened to you. There are people who believe that. (And lets all go ahead and agree that that is bullshit.) But, maybe by "take responsibility," they meant for the now. They meant you should grieve, because it really is the only way forward.

He gives you permission to let people go when they say these hurtful things. You have to grieve. And since pains are different and people are different, they may not be able to offer empathy. Or sympathy. Or whatever support you need. What you need might be space.

It is OK to walk away from people when you are hurting and what they say makes it worse. Even if they didn't mean to make it worse. You don't have to be strong for them. And you are allowed your anger. If you agree with every word he wrote, that is OK. But don't preach it to me. That is not how I deal with pain. And I am allowed to grieve in my own way too.

Grief can be isolating.

We need to be more generous listeners. We need more empathy. We need to acknowledge that we are all inadequate; we really cannot fix each other.

As I was reading all sorts of scripture verses came to mind. Some of my very favorites seemed relevant:

"Rejoice always.
Pray without ceasing.
In all circumstances give thanks, for this is the will of God for you in Christ Jesus.
Do not quench the Spirit.
Do not despise prophetic utterances.
Test everything; retain what is good." 1 Thessalonians 5:16-21

"Blessed be the God and Father of our Lord Jesus Christ, the Father of compassion and God of all encouragement, who encourages us in our every affliction, so that we may be able to encourage those who are in any affliction with the encouragement with which we ourselves are encouraged by God. For as Christ’s sufferings overflow to us, so through Christ does our encouragement also overflow." 2 Corinthians 1:3-5

"Blessed are they who mourn,
for they will be comforted." Matthew 5:4

These are the verses I lean on when I am in pain. The verses which keep me from ever feeling sorry for myself. These are the verses that sprang first to mind. These verses are challenging and even painful. I don't know if there is a reason for everything. I do know that God can and will draw goodness out of the most impossible places.

One more verse:

“My God, my God, why have you forsaken me?” Matthew 7:26

Grief. Fear. Abandonment. Loss. Pain. Our Lord understands. He hears. He is here.

Dear Maura

Dear Maura,

I am a the parent of a child who has special needs. I heard you. I read the letter you wrote to me and my tribe. Thank you. From all of us, thank you.

I thought I should write back. You see, this past Sunday I missed Mass again. I don't usually. Honestly. But yesterday it was more than I felt like I could do. It is a catch 22, you know. I need the grace from the sacrament to make it to the sacrament. (Like the coffee catch: I need coffee before I can make coffee.)

Going to Church is not easy. Sometimes it takes all I have to get out of the house. I worry that the seasonal bugs will land my sweetheart in the hospital. I worry that her loud breathing will put her on display. I worry that I will hear hushed disapproval of my less than perfect family. I worry that Sarah's sisters will hear some obnoxious comment about how their sister looks. Or worse, that she will hear. She is four now, and she is more socially aware all the time.

I tell other moms whose kids stand out that a smile is the best defense. I tell them that most of the time you can disarm rude staring with a friendly hello. I tell my friends that most people need a connection; they need a little push to realize that we're just people. Normal people with normal feelings and normal needs. I tell them to pick their battles though, because it is exhausting. I choose to believe the best of most people, but I gotta tell ya, it takes a lot of energy to smile and say hello to someone who hurt me and my child, even accidentally.

Maura, I am looking for you in the pews. I don't want to hide with my eyes glued to the altar. I don't want to pretend it is just me and my immediate family in God's presence. I want to feel the community. I want to be in the community. That is why I am there. We are the body. We are, at times, broken, disjointed, and disoriented. In the Eucharist, we are one. In thanksgiving. In this blessed feast, this sacrifice, this joyful prayer, I am with you.

I've met you. Well, not you but the "we" you represented. We've been welcomed and loved. When you smile at my kids or greet them during the kiss of peace, we don't feel like outsiders. We don't feel excluded. We don't feel like a barely tolerated other. We feel unity. We feel love. When you look at me with a friendly smile or open the door because my hands are full, it is more than a simple gesture. It is a welcome, and I need it. When you invite my family out to lunch with the gang, even if we can't go because it is nap time after all, we feel the embrace of the community. I will try to remember that and to ask for help when I need it. 

I know my child is beautiful. I am glad you can see it too. Your letter was a lifeline, and I needed it. Your words echo Paul's in his letter to the Romans. "Welcome one another, then, as Christ welcomed you, for the glory of God." 

Ten things you can do for your friend who is in the hospital with their child

Being in the hospital can be scary, stressful, exhausting and generally awful. "What can I do?" is the single most common question I am asked when I am in the hospital with Sarah. I am deeply grateful for that. But I will not answer then; I cannot focus on the question. Here are some ideas. 

Ten things you can do for your friend who is in the hospital with their child:

1. Coffee. Hospital coffee is often terrible and terribly expensive. A nice cup of coffee is an easy thrill.

2. Visit. Not everyone can, and certainly no one can every time, but consider coming for a quick visit. A hug goes a really long way. Limit your visit though. Your friend is tired. They probably stayed up too late and were woken up too early. Stress is hard on the body too. It might feel like a waste to drive all that way for a short visit. It isn't. 

3. Food. Hospitals vary, of course. Some are better than others. But even in a hospital with good food, food from the outside will be appreciated. Hospitals and even units within hospitals all have different policies about food, so check. The policy is very likely online. 

4. Money. This is something no one is going to ask for when you ask what they need, but I promise it is almost certainly needed. Even with great insurance, hospitalizations rack up costs. Food, parking, gas- none of these expenses will break the bank in a day. But days and weeks add up very quickly. I can give a pretty accurate budget run down for each of the hospitals we frequent- some are much harder on the bottom line than others! Even if we stay afloat during the hospitalization, it is really hard to catch up when you begin to fall behind on bills. I don't hear people talk about this a lot, but nearly every family I know who has a kid who spends time in the hospital is behind on bills. This is why. We are on the same tight budgets that most people are on; the surprise expenses of an unplanned or extended hospitalization can throw the whole budget for months! If money makes you uncomfortable, or you think it will make your friend uncomfortable, think gas cards or grocery cards. 

5. Take the siblings out. Spoil them. You will have my undying affection if you make my children happy during these times. Kids struggle a lot when their siblings are in the hospital. They get less of their parents when they need more. They are worried. They are scared. They might be feeling like they are less important than their siblings. They even be might be mad. Give them a break from full focus on their sick sibling. 

6. Smile. No one does. People think they should feel sad. The thing is, moods are contagious. Bring a little joy. Sing with them. Laugh with them. Don't force a mood you don't feel, but don't leave all the smiles at the hospital door either. We need them inside. 

7. Tell your friend you are going to pray, and then do it. Join the prayers of your friend for health. Add prayers for your friend. Maybe write out a short prayer. When my friends ask for prayers, I pray right away. I will forget if I put it off. It doesn't take long, and I can pray later too. God listens and he knows what they need, so this does not have to be complicated. Let your friend know you are praying. Just knowing you are thinking of them is helpful in and of itself. If you don't pray, send good thoughts. That's helpful too. 

8. Care packages. Care packages are a tried and true method of making someone feel loved. In a hospital care package send a mix of things they might need and things that will make them happy. This does not have to be a huge expensive thing. Here is a list of things you might consider including: 

• clothing (for the friend or the kid. They are not home. Laundry might be a complication. The kid is probably in a hospital gown, but they will have to go home at some point, and the clothing they came in is probably dirty.) 
•  a real toothbrush and/or razor (we always forget to bring them.)
• books or magazines, for either the patient or the parent
• a toy for the patient
• tea
• a real mug 
• lotion or shampoo samples or lip gloss
• Silk flowers or balloons. Real flowers are allowed on some units, but not most. 
• Music
• chocolate 
• Vitamins
• a coloring book. I suppose you could get one for the kid too. 
• Essential oils are a great choice. Think calming blends. I bring a roller bottle with frankincense and lavender in almond oil. 

You know your friend. Are they silly? Bring a slinky. Are they serious? Bring a journal. When you are planning a package, you might think of it as a sensory escape from the hospital. What would you want to look at or smell or hear or do? 

9. Dinner for the family at home. This simple gesture should not be underestimated. 

10. Offer to sit with the patient while your friend takes a shower or a walk. Or even goes out for a meal with their family. One of the hardest things about being there as a parent is that you feel guilty leaving, even for a minute. You cannot solve this problem for your friend, but you can offer a reprieve. 

Bonus:

Keep asking what you can do. In the moment, your friend might not be able to answer. They'll be tired. Their mind will be occupied. When I am asked, if I answer at all, I am likely to say something inane like, "bring me a fresh towel and a banana." But you know, I heard what you meant to say. I heard, "I love you and I am here." That is huge. That's the biggest thing on the list. 

It can be isolating. You are the village. Just be there. 

The R-word

I can't believe that this still needs to be said: Stop using the word retard. Just stop. No excuses. No explanation. Just. Stop.

I was in an argument online yesterday. I know. You can't judge the world based on internet commentary. Still.

It was a rehashing of the story from 2012, when the tediously predictable Ann Coulter made headlines by calling Obama a retard. John Franklin Stephens, an Olympic competitor who has Down Syndrome, penned a beautiful and loving response. The response went viral. Ann Coulter doubled down, ensuring her continued relevancy. I don't know why this story is making the rounds again. The internet is weird.

I get it. People are sick of being told how to speak. People are frustrated by accusations of bigotry. Some worry that whoever controls language, directs the conversation. Some are just tired of being on the defensive. PC vs. anti-PC language wars have been going on for a long time. The list of embattled words is long and diverse.

This word doesn't belong on the battle list. This is not a battle. This one is easy. The word is offensive.

I've had this argument so often I think I could write an automated Beth responder to have the argument for me.

I had not had the argument in years before last night though. I still see the many, many blog posts imploring people to stop, but they sort of felt dated and irrelevant. No one says that anymore, right? Wrong, apparently.

The names are a distraction. It isn't about Obama. It isn't about Ms. Coulter. It isn't about elevating political discourse above schoolyard taunts. It isn't about politics. It isn't even about rudeness.

When you use this word to insult someone, the insult is a comparison. When you use this word to belittle someone, you are belittling a group of people. The word marginalizes this group of people much more effectively than it insults whomever you intended to insult. And it doesn't matter at all if that is what you meant. 

Mentally retarded used to be a medical diagnosis. It used to describe people with various cognitive impairments. Etymologically, it means to slow down or to delay, and it is used in variant forms in music. As a diagnosis, it described a broad category of symptoms. It is not in use as a medical diagnosis anymore. It has been replaced.

Cognitive impairment describes everything from memory loss to learning disabilities. It does not mean stupid. If we are brutally honest, there is an overlap. Both might be used to mean lower than average intelligence. But stupid always has a negative connotation. Stupid is an insult. And cognitive impairment is a broad term, covering impediments to memory, concentration and learning ability. Insisting that they are synonyms is, well, stupid.

This is the hard part, which is not actually hard at all. A diagnosis should not have a negative connotation. That is an uphill battle advocates fight every day. It is really hard to name some things because the things themselves are not socially acceptable. As soon as the thing is named, the new name becomes an insult. Mentally retarded replaced other words which had deteriorated into pejoratives. The first person to do it probably thinks himself very clever. Every time. Bullies always do.

As a society, we don't handle these things well. We don't like to think about mental illnesses or cognitive impairments. There is a stigma. And it needs to go away.

When the world appropriates a diagnosis for use as an insult, the intended target is not the only target. The insult is the comparison. "You fool. You are stupid. You are just like those children with special needs." Wait, what?

Words have meaning, and that is what that one means.

So, no. This is not just another battle over language. This is not one of those times where an argument is directed by evolving language. There is no argument at stake in defending usage of the term. There is just an affirmation of the stigma associated with cognitive impairments and a growing disapproval.

Maybe there is an element of political correctness after all.

If the fact that the word hurts people doesn't dissuade you from using it, social stigma should. We're judging you, you bully.

Evolving or revolving

I've been reading opinions about marriage. What it is. Why it is. If it is. And I have been examining my own evolution of thought on the subject. Obama evolved. I'm evolving.

When I was in high school, many of my peers asserted that marriage was just a piece of paper. Why would anyone need or even want a governmental stamp of approval on their relationship? It made sense to me. Either you love someone enough to stay with them forever, with or without anyone's approval, or you don't. Ah teenagers.

It was the 90s. So, everyone was talking about civil unions (remember civil unions?) and Don't Ask Don't Tell.  Homosexuality was a big deal in politics, and I was as politically active as any high school student.

Once, the school board in my county held a hearing on homosexuals being bullied. I don't clearly remember the details. It was a hate crime kind of discussion. I attended and argued that bullying must be against the rules and punishable, but if you single out one object of bullying to protect them specifically, you do the community a disservice. Either there are adequate rules in place to protect the students from bullying of any kind, or I am not protected. It was not spur of the moment, I had carefully prepared a speech after thinking through my own thoughts and experiences. I had been bullied, though not targeted for my race or sexuality. If my homosexual friends needed better protection, the whole student population did.

In college, I don't remember why it came up, but it did. I wrote a very short opinion in the school paper which basically asserted what I took to be self evident: homosexual relationships are not the same as heterosexual relationships. Setting aside questions of morality, they are simply different. Whether or not it is moral isn't the right question; gay marriage is impossible.

It wasn't a very nuanced idea. It wasn't clever or original. It was typical college freshman stuff (I wasn't a freshman). It seemed evident to me, so it must be evident to everyone and it must be true. I had thought about it; it wasn't an unconsidered opinion. It was just, as yet, unchallenged.

Also in college, I had a friend who had some concern about his visa status. I didn't know the details, but I told him I'd marry him, if it would help. I did love him, but not romantically. I said that I didn't actually care about the piece of paper from the government anyway. If and when I got married "for real" it'd be in a Church in front of my family- and that is what would make it real. It didn't occur to me then that these ideas I had about marriage were already in conflict.

A good friend pushed back against my ideas. He challenged me to flesh out what I was thinking, why, and what followed. I wished I had spoken to him before putting my writing out for anyone to read. He forced me to admit that my opinions were formed by my experience and my faith, which while good is not universal. He forced me to confront the question: If I don't think a green card marriage is immoral, then on what ground can I object to homosexual marriage? I had already disassociated what the Church does and what the state does in my mind. I had already decided that what the state does had to do with rights and had nothing at all to do with my definition of marriage.

I remember that my opinion that a civil marriage was nearly meaningless deeply offended a good friend whose parents were civilly married. They loved each other and raised a picture perfect American family. I was blessed to meet them and I cherish memories of their generosity and hospitality. They weren't Christian. He wasn't Christian. He hoped one day to marry, civilly, and love and raise a family. That was the first real emotional challenge. Did I really think his parents weren't married? Did I really think he couldn't be married? What an absurd idea. Of course not.

So, I came out of college with both my thoughts and feelings on the subject a little shoved around and unmolded. My ten year college reunion is coming up this fall, so that is how long I have had to mull these thoughts. Maybe they are over-steeped and bitter.

One more personal story: I found out some time after college that my best friend in high school was homosexual. It was startling. Jarring, even. Not that she was homosexual, but that I didn't know. She didn't tell me. We had been very close. She would have heard all my thoughts, sometimes wandery and indirect, sometimes forcefully political. She knew all my crushes and dreams. She knew the silly stuff and the serious stuff. My closest friend was gay, but I didn't know. Did she? Why didn't she tell me? Did she think I couldn't handle it? More troubling, could she have been right?

I certainly had other friends who were gay. You know when you are 16 and you think 30 is old and you make a silly pact to marry someone you love but not romantically if you are both still single at 30? Maybe that isn't a thing. Anyway. My guy was gay and we both knew it. We joked that we'd teach our beautiful children the alphabet with Mozart's alphabet song. I'd like to say that I would have handled the information about my best friend in some loving way, but I don't know. The idea that she may have felt like she had to keep it secret breaks my heart. How awful and isolating. That she might have been right in her fear that sharing would hurt our friendship is a painful possibility.

One of my more recent blunders was to simply assert that the state should get out of the business of marriage altogether. That simplistic view has the appeal of closing the question. But if the state takes no notice of marriage, what about all the legal issues surrounding marriage? Inheritance. Medical choices. Hospital visitation. Children. Immigration. I am married. I don't think very often about the legal benefits. That is the luxury of having them. I do not want to fight for them. I do not want to lose them.

Here is my point: my views are shaped by my faith, my thoughts and my experiences. That is not to say that there aren't truths, but only to note that what seems obvious to one person may seem obviously untrue to another. Indeed, what seems obvious to you today may crack a bit under tomorrow's light.

I was wrong about what the Church teaches about marriage. I was also clueless about the real benefits of civil marriage and by extension I completely missed the boat on state interest in family and family life.

Marriage is hard to define. Per the catechism: "The matrimonial covenant, by which a man and a woman establish between themselves a partnership of the whole of life, is by its nature ordered toward the good of the spouses and the procreation and education of offspring; this covenant between baptized persons has been raised by Christ the Lord to the dignity of a sacrament."

That is a definition I recognize. Sacrament. Covenant. Man and women. Procreation and education. That is a definition I can claim. But, is it a definition I want parsed and pickled and protracted in law? As it is, in the language of the catechism, I understand it. Within the context of faith- my faith- I recognize it. I aspire to living it. But the thing falls apart of you take Christ out of it. The words don't make sense anymore.

I've taken a long way around, but I do understand Christians who insist on Christian-centric language even in law. The alternative remains an enigma, at least to me. I know it exists. I've seen it. But I don't know how to talk about it. I don't have the words.

Love is important, but even if it was definable, it is not a definer. Commitment too. The difference between a loving commitment and a marriage has to do with this other word that I don't really want the government to define, but I also don't want them to ignore: family. When you marry, you change your family. You enter a family as an in-law. You welcome a spouse, to your family. And you form a brand new family.

I hear people groaning about a redefinition and it resonates. The only definition I know how to discuss isn't about two people. It's about a creative love. A sacramental union. It's about a Christian union which is the unbreakable foundation of the family. Children are not a relevant afterthought, they are essential. Marriage is "...by its nature ordered toward the good of the spouses and the procreation and education of offspring..."

And so, when it comes to the heart of the thing, I really only know how to talk to Catholics. Divorce. Birth control. Adultery. These things all conflict with the definition I know.

Here is where I am still floundering: I don't want birth control, divorce and adultery to be illegal. I don't think I know anyone who does. The definition I understand is not a definition I want enshrined in law.

Gay marriage is legal now. I cannot think about it using the same terms that I think about my own marriage, the language of the Catechism. It doesn't make sense, in those terms. Unlike the sins listed, gay marriage is not bad, it is impossible. So how do I understand it? How do I talk about it?

So, I am sympathetic to insistence that this is a redefinition.

I am also sympathetic to insistence that marriage comes with rights, and denying rights based on bedroom behaviors is not OK. The practical concerns that I don't worry about, because I am married to the man I live with, are not a side note. They are a government recognition of a relationship which I chose; recognition which matters in real ways.

I don't know how I would design an answer. I read all the articles and blog posts about how it affects me. I even read Matt Walsh. Not a one of them impressed me. It is not that I am a wishy-washy wonderer. I know what I think marriage is. And I don't want a law about it. And I am not entirely sure where that leaves me.

I still don't want to talk about gay marriage.

And Facebook didn't convince me.

I had an eye opening moment several years ago. I was one of the pro-life activists who would pray outside abortion clinics. (Can I mention abortion without derailing entirely?) Every Saturday, we'd meet for Mass, then go to the clinic and pray. And every Saturday a group of women would meet on the clinic steps. They'd don their identifying orange "clinic escort" t-shirts. They'd laugh and joke most of the time, but when women came, they went into security guard mode.

Sometimes they would jeer at us. We prided ourselves on accepting the attack without anger, but among ourselves, we called them deathscorts.

One day during prayer I realized that they were the same as me. Not just in some hugely general, they-are-people-and-we-should-respect-them kind of way. We were women who had decided to volunteer our Saturday mornings to protect women from violence. They were not my enemy; they were me, but with different formation and experience.

Abortion is depressingly difficult to discuss. I want to scream at my would-be allies sometimes. If your impulse is to scream at scared pregnant women, you yield any moral high ground. You are not loving her. You are not loving her baby. You are venting your personal anger. It is not just a missed target, it is an assault. There are bright lights in the pro-life world worth mentioning, like Abby Johnson. But the rage against women is still depressingly common.

I've derailed.

I have my thoughts and beliefs about marriage but I am not ready to argue. I mean, I guess I am prepared. I love arguing, and I have put a lot of thought and prayer and research into my beliefs. I'm armed to win! But I don't know what winning looks like here.

Some issues cut more deeply than others, and this is one of them. Because disagreeing is not a simple surface disagreement where we can just agree to disagree, it is a fundamental disagreement. When you tell someone that their family is not really a family or their love is not really love, its not a disagreement, its an attack.

When you tell someone that their faith is a trivial thing or that it does not belong in the public arena, the faithful are baffled. What does that even mean? All my beliefs are formed in prayer. (OK. That is an outright lie. But it is an aspiration. I'm working on it.) I don't want God out of my head.

This is my blog. This is my soapbox.

In an argument, you listen for flaws. What mistake will they make? Where is crack in the foundation? It is exciting and not always entirely useless. But what is the goal?

We're not very good at listening across lines.

We have to be attune not just to what we want to say, but what is likely to be heard. We can choose our choirs and preach until all the preachers are foamy mouthed generals and the choirs are armies ready to do battle. That's an option. But it's not a good one.

See that guy over there? He stands for everything which is wrong with the world. He wants to take away my rights because he fundamentally hates me and what I stand for. 

Battle lines are neat. And self-fulfilling. You will hate the guy who hates you and wants to take away everything that matters to you.

We don't need another argument. We need a dialogue. We need to learn to listen generously.

I don't want to talk about gay marriage.

I don't want to talk about gay marriage. It is not that I am uninterested. It is one of the most important issues of my generation. But I am struggling to navigate.

Thoughts are barely afloat, drifting in a sea of feelings. 

Who is saying what and why? Why can't people hear each other? 

At church last night, the priest preached about persecution. He was talking about how sometimes God allows bad things to happen so there can be good fruit. I hear that but I am not totally sold. God's ways are not always fathomable. That is clear in scripture. Sometimes we don't get it. Sometimes we see good fruit. Sometimes we don't. Whether or not there is a broad truth to be found, it is demonstrably true that God can and does bring good fruit from unlikely places. 

This priest told a story about another priest. The man was accosted by some gay rights activists, not far from their parade. They spat on him, apparently for being a priest. The story was about courage and persecution. Martyrs, the great heroes of the faith, are born in persecution. If we are going to be persecuted for our beliefs, we should not cower. We should revel in the glorious truth of Christ triumphant. 

It was a good message. But with a blind detail, which undermined the whole thing. He said that if the victim had been a gay man, society would have taken notice. And he jumped off from that point into an end-times diatribe about culture wars. Us vs. Them. It tied neatly with his previous points, and it wrapped up his homily well. But he lost me.

I was distracted. I didn't know the people in front of me. They were warm and lovely with my kids. They sang with palpable enthusiasm when the Church was singing. I wanted to know them. When the homily made that turn, something changed. It might have been an irrelevant coincidence, but when the homily went from preaching about God's unpredictable grace to culture war, they seemed suddenly uncomfortable. They exchanged glances. Not eye-rolling, but something. I saw pain, though they were smiling. I briefly considered offering a hug or something. I also considered talking to the priest after Mass. In the context of preaching about having the courage to do the right thing, maybe there is irony that kept silent. I chickened out. 

Like I said, I don't know them. Maybe I saw something that wasn't there. Maybe I saw something that was there but had nothing to do with the homily. Maybe. 

Or, maybe one of them was gay and the 'Us vs. Them' message hurt. 

I wondered, would he have preached the same message in the same way if he was preaching to a room full of homosexual people? What if it was half the congregation? What if it was only a tenth of the congregation? Would he have preached the same homily if he had been aware that one person in the room was homosexual? 

It doesn't matter a bit how often we insist that everyone is welcome, if the message is that homosexual people are an unwelcome "them." 

I keep hearing Christians go on about how they don't hate gays and they don't understand why having newly unpopular views is characterized as hatred. I share these newly unpopular views, so I hear this frustration. But listen carefully. 

The priest wanted to focus on an incident absent history. If you want to hear a story about being persecuted simply for being openly who you are- for choosing to dress in a way that tells the world something about who you are; something that they would rather you not be; something that if you are, they think you should at least have the decency and common sense to keep it to yourself- if you want to hear that story, ask a gay man.

Maybe there is a coming persecution. Maybe this story is a sign of things to come. Maybe. Maybe it was an ugly expression of a just anger from people that have borne violence for too long. There is no justifying it. But can we understand? Do we want to? Are we listening?

On the one hand, the parish priest was right to say it could have been him and he was right to preach that it might take courage to be visibly Catholic. On the other hand, to claim, as he did, that this kind of attack it unprecedented and if the victim had been gay, it would have been news- that is willful ignorance. That is the kind of ignorance which trumpets hate. 

At this moment, society seems to have turned a corner. It is not OK, anymore, to spit at gay people and denigrate them. It is not OK, anymore, that they be laughed at and bullied. It is not OK that their suicide rate is exponentially higher. Society has decided to stand up to that bully. Or at least to stop being that bully. There are still bullies. The world is still fallen. 

I guess I do want to talk about marriage, but we have to start somewhere. I want to start here. If you set up an Us vs. Them dichotomy, don't be startled when the "them," who have historically been bullied, hear hate. Don't cry foul. If you are talking about gay rights history, and you are pining for they way things used to be, think about the way things used to be for "them" in the good old days when gays could be mocked, humiliated, and beaten, before you play your persecuted victim card. 

And lets get this one right. Everyone is welcome in Church. If you start excluding people, you might as well slam and lock the doors. No one is worthy of the grace offered. If you tell people they are welcome, only to denigrate or isolate them, you are lying. First things first, homosexual people are people. Love them and see Christ in them, or repent. 

Can we learn to talk about things which will hurt people? Can we preach hard, counter-cultural messages? I think we can, but not until we learn to love, and that starts with listening. 

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.