Thursday, December 31, 2015

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. 

Wednesday, December 23, 2015

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. 

Thursday, December 3, 2015

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