To Be Brave.. a Non Disney Version

DISCLAIMER:  I am sorry this took so long.  It was a significant amount for us to process.  Overwhelming.  

I am not certain that bravery is innate.  I do believe that resilience is a learned behavior, but to be truly brave is rare.  Almost as rare as the color of Iliana’s eyes.  Those of you who have looked in her eyes understand.  Most of you still don’t know exactly their color.  Just like I am incapable of describing her bravery.  Both are Iliana.  Both are beautiful.  The rest of the world is busy telling Iliana how pretty and cute she is.  She knows this is true.  So, our dialogue is different.  I ask her, “Show me who is (amazing, smart, strong, fun, creative) brave?” She rams her double-jointed thumb against her chest.

The days that we were in the hospital were challenging.  I am challenged by her strength through those days.  I am thankful for a conservative doctor who practices medicine compassionately.  I am also thankful for his nurse that showed kindness every step of the way to Iliana and me. 

Wednesday morning, we went to the OR at 6:30.  We were the first case for Dr. Cochine.  We endured one of the most clueless prep nurses that I have ever encountered.  A short version of her disconnection from our story was her looking at Iliana and saying, “She looks so normal.”  My curt response to her insensitivity was, “She is better than normal.”  I was thankful when Dr. Cochine came in.  Again, he talked us through what the expectation of his time in the OR.  He taught me about the catheters.  Imagine the diameter of a drinking straw being woven through your entire digestive track.  I held Iliana tightly and prayed, as many of you did, for her to have strength beyond measure to endure what she would have to do.  She was taken back, and I walked alone into the waiting area.

Placing of both catheters should have taken thirty minutes to an hour.  Her placement took almost three hours.  When the doctor came out, I could tell that her was not pleased with the news.  The test had not even started, but after placing the lower catheter in her colon he reported that it is huge, floppy, and dilated.  As he was explaining, he said, “there might be a need for..” I cut him off, “a resection” He hesitated and said, “Ostomys can improve their way of life.”  He believed that she would loose her colon.

I sat in the waiting room, as I saw the rotation of doctors came to meet with parents about he progress of her tubes.  I was angry as this particular mom was crying and being dramatic over her healthy child having tubes.  I want to be compassionate in this moment.  However, it was very possible that my daughter will loose her colon, which has lifetime implications that eardrops will not fix.  I also sat in anger.  I thought again of the girls’ birth mom, and exactly what her choices have cost our daughter and our family.  I wanted to sterilize her with a spoon in that moment.

I was able to go up with Iliana to the room.  Jeri, Dr. Cochine’s nurse, another GI nurse, and the charge nurse were all in the room.  Iliana was the second case to have her colon studied on this new machine.  The shaft of the catheter that was in Iliana’s colon held six receptors that measured and documented the nerve responses.  The computer screen showed immediately all readings; each receptor had its own line.  Everyone was there to learn.  Including myself.  As in all instances of the girls’ health, I needed to understand what to look for.  So, I continued my audited RN education.  No one expected to see any indication of promise in this study.  So, we waited.

Iliana did everything that she was asked to do.  Everything.  She even tried to eat and tolerate a higher rate.  She was brilliant.  Her colon after two hours into the test still did not show any capability of contraction.  In cases like hers, they then feed a very high dose of Docalax through that catheter.  Within twenty minutes, Iliana’s colon had five forced contractions.  They were so strong that she acted like she was going to vomit.  It was so hard to see.  They brought a bedpan, and Iliana evacuated blood.  My eyes stung.  As parents we want to take pain from our children although such a transfer is impossible.  I was overwhelmed how excruciating this moment was for her, but I stood by her, holding her hair and trying to encourage her that she was being so brave.  Her doctor was so encouraged that she was capable of having ANY contractions.  This meant that we could give the colon a year before making any hard decisions to change her life by removing it.

(Even as I type this, Iliana is in her bed singing her song.. “My God is so BIG… so strong and so mighty… there is nothing my God cannot do.”… Amazing timing, little girl!!)

An hour later, he was able to remove the lower tube.  And I could see the relief in her body.  Sparks of Iliana’s personality surfaced in momentary glimpses.  She lay back in bed, as I leaned forward and we locked tired eyes, I said, “Show me who is brave.”  She weakly put her thumb up against her chest.

Sleeping was hard for both of us that night.  Her upper cath was so uncomfortable.  If she moved wrong, she could feel a pulling in her body.  6:30 came soon, which was probably good. Jeri came to set up the receptors to the machine.  At 7:30, we had to start the test over, which meant that the test would take longer.  The small intestine challenge takes longer because “fasting” contractions are an indication of the health of the upper bowel.  And she had to have two eating “challenges” during this test.  So this test was twice as long.  In the midst her test, her IV went bad and there were other hiccups.  But it was less dramatic than the previous day, and they allowed her to pull the tube out of her nose herself.  She did so without flinching.  You tell me; who is brave?

So, all this to learn Iliana’s body.  We had significant learning.  Most of it was expected, and discouraging.  Excuse me while I go scientific on you.  (Time to tune up your inner geek)  Iliana has significant motility issues.  The GI system is a pump like the heart.  All muscles and nerves have to fire off with coordinated motion so that things move in the right direction for the body to function.  If you think of Iliana’s small intestine a long tube, take one small section of that and think of it this tube in segments of 1, 2, 3, 4.  In your body and mine, there is a well-coordinated motion as food moves through our body of a series of contractions in these segments.  1 fires off then 2, then 3, then 4.  In Iliana’s body there are inverse contractions.  2 fires before 1, 4 before 3.  Her entire digestive track malfunctions like this.  Currently there are no medications to help regulate her nerves.  Children’s Mercy is appealing to the FDA to use two different drugs for “compassionate dosage” for three other kids in the midwestern area.  Iliana would be the fourth.  They first have to get approval for the hospital to use these medications, and then they present a case for each individual child.  We are a few years away from the FDA hearing why this medication would help Iliana.  In the meantime, Iliana will struggle to eat and be dependent on her feeding tube.

Her colon is sick.  And it will continue to make her sick until she has her next surgery.  Yes.  Next surgery.  This will happen this upcoming week.  The plan is to create a cecostomy in her colon.  This is a button, like a Mic-key button, that will allow us to flush her colon daily with powerful medications from the top of her colon down.  Then, we wait for a year. 

Please pray.  Please.  There is a small chance that this surgery will allow the colon to heal from being badly damaged over the course of her life.  It will never be fully functional, but we are hoping for enough healing that she would be able to avoid another very long hard surgery in the future.  Please pray that HER surgeon that knows her body better than anyone else will be able to put her on his schedule.  He is leaving in August to accept a Chief position in Wisconsin.  Damn Wisconsin. 

Iliana continues to dance around the house today with her backpack and tube dangling around her feet.  She continues to smile.  To sing.  To push my patience.  To be who she is in spite of her body.  In spite of her limitations.  She is better than normal.  She is brave.

Tubes

This is a very raw.  I usually sit with what I write a long time.  This entry is not like it.  I wrote it like vomiting it.  (Sorry...)

Iliana has a lot of tubes.  For many reasons.  I don’t know if she knows what they are all for, but she is learning to talk about them.  And that is powerful because her simple words allow us to experience her perspective.

We have been talking about this admission for a long time.  We have been waiting for it since January.  Praying for it since March.  Finally, preparing for it since May.  And finally, here we are.  Everyday for the past two weeks has been a count down.  “Mommy I don’t want to go to the hospital and have a tube in my hand.”  Hard to explain to a three year old why we do things we don’t want to do.

When Iliana was born, she didn’t have an esophagus.  The tissue that she had ended in a pouch.  She was hooked up to suction so that she would not drown on her own spit.  She was fed through a mic-key button in her tummy.  Then finally, she was connected and we believed that she would be able to eat, drink, and be free of all the tubes.  She never healed from the surgery because there was simply not enough tissue to connect to her stomach.  So, she came home with a feeding tube  in her tummy, a surgical wire that came out of her nose, and a suction tube that came out the back of her chest.  Our family had to adjust from the furthest thing from normal.  We became protective of her tubes because they were Iliana’s and she needed them.  They were part of her.

When she was almost 9 months old, the surgical team decided that the connection had officially failed.  She would have a gastric pull up.  Her stomach now sits behind her lungs.  In order to do this surgery, our team of very gifted surgeons had to take apart her chest cavity and abdomen.  The surgery was close to 16 hours.  It is on par with a heart transplant.  They gave me back my baby, a badly brusied and swollen child.  She was on an oscillator that breathed for her because one of her lungs had been knicked and collapsed during the surgery.  She had a breaking tube.  A tube to drain the blood from her nose.  A larger suction tube in her back.  She had two IVs.  And she stayed this way, unresponsive, for almost two weeks in PICU.  During the second week, two other children died in PICU, and I was thankful that she was still there, somewhere.  Again, we believed that she would learn how to eat and gain independence from all these tubes and machines that she needed to live.  We were assured that she would be tubeless by the time she was 18 months.

By 18 months, she was having more studies.  Swallow studies, upper GIs, follow throughs.  She was not eating.  In fact, when we would try to feed her, she would vomit.  Some nights she went through three pairs of pj’s and I could not keep up with washing her sheets.  Everyone was baffled.  It was maddening for her surgeon.  Out of nearly a dozen cases, she was the only one not eating.  It was discouraging for us.  This is not what we had hoped for our amazing daughter.

By two she had two more major surgeries.  She had learned that she didn’t like IVs.  Yet, she continued to be unable to eat.  And she continued to vomit.  One a good day only a few times during the night.

And, by age three, we learned that her gut did not function normally.  We had spent so much time and energy evaluating how her stomach had worked, that we had all looked past her intestines.  She is not able to poop normally.  She is on adult dosage of miralax, twice daily through her j-tube that keeps her fed.  And finally, she has nightly enemas to force her body to get rid of the excess.  She cries every night when we do this.

She has had a lot of tubes in her life.  And to her credit, she is a brave little girl.  You have to only look into her untamed eyes to see a fierceness in spirit.  She is also like a pixie, floating from person to person in life, enchanting them with her smile and not listening to a thing they say.  She will wrestle her brother, tube, nail polished fingers, princess dress and all.  She is always on her tip toes.  She dances all the time with her tube dangling around her feet. Sometimes in her spontaneous bursts of energy, she pulls her tube out of her stomach and our lives stop until have it placed back in the hole in her skin that goes directly to her stomach.  She cries for this also because now she is able to tell me that it hurts.

I now really hate the question, “How much longer do you expect her to be on the tube?”  I know the question is being framed out of curiosity and concern, but we have hoped so many times that she would be able to eat normally instead of being pumped with food 18-21 hours a day.  But this is not the case as we don’t hope for life without the tube anymore, we hope to understand why Iliana’s body doesn’t work. 

Tonight, we are preparing for one of the hardest things we have ever asked her to do.  She is getting a gut clean out for the fifth time in her life.  July 11^th, they will take her to the OR and place live cathaders in her body.  One will go down nose tracking the movement and response to where her small intestine ends.  The other will be placed up her bottom to the start of her large intestine.  During these three days, she will have no sedation or pain management, nothing that would slow her gut down further.  She will also have her IV and jtube.  We are asking so much of her.  We have to do this test to determine what in her digestive track works and what fails her.  She is tenacious.  I know she will be able to do this in spite of the discomfort and challenge.  Our hope is to leave on Friday or Saturday with knowledge of Iliana’s body function and determine the next steps to help her.

At the same time, as I was tucking her in her hospital bed tonight, we sang her favorite song from church, I wish you could see her sing it.  She holds up her small arms that she believes to be beastly expressions of strength and with a full cheeked smile and dancing eyes she said, “My God is so BIG (emphasis… ) so strong (with furrowed brows) and so midy (mighty)…. There’s nuffing (sweeping her arms in a frantic motioning of a safe as her IV tube snakes wildly) My God can not do.” 

She speaks truth.  Tubes and all. 

I have not read this or edited it.  I will do that later, so please know this is my first hack at explaining this… so please read graciously

What I Want My Words to do To You

In my amazing Seminar class, we watched Eve Ensler's documentary "What I Want My Words To Do To You". If you have not seen this film, it is astounding. You should check it out. At the end, all of my students had to write their own version of writing. They wrote beautiful things. This was my version.

What I want My Words to do to You:

I want my words to make you sing.

I want them to pull back the cobwebs of forgotten memory

And allow you to remember what it was like to sing with unabashed volume.

Like a child tripping through quiet, echoing halls.

Like youth, driving open windowed, inhaling summer.

To sing with all the joy we try to bridle with age and responsibility.

To cut the strings that have encircled your chest,

And kept you from breathing.

I want my words to make you shout.

With reactionary protest.

I want my words to make you raise fists

Demanding justice for those who have none.

Who sit in cells of silence, chained to broken promises

To shout with dissenters declare

For those who have no voice to shout with

Because their vocal cords have been cut with

Knives of slavery and marginalization.

I want my words to make you cry

Because you know that you are not alone in pain.

And you can let go of some of it.

Like waves pulling sand back into the ocean.

I want you to feel acceptance

For who you really are

Beneath all the layers you have hidden under

From the cold of judgment and rejection.

I want you to heal.

I want you see outside your own pocket of pain,

And reach into another’s and allow them to empty

Those weights they too have held.

I want my words to make you cry

Out with the joy that only hope brings.

To know that those tears water flowers of spring.

I want my words to make you silent.

To quiet all that has made you sing, shout, and cry

To know that change is possible.

And you don’t know all the answers.

And you can never really be that sure.

I want my words to sit with you

In the quiet unswept corners of your soul,

And reside with you.

Always.

Mercy. Please.

First of all, I think it is fair to say, that this isn’t my story. I had a brief intersection with this story for less than thirty minutes, but my heart gravitates towards it like a compass needle to north. I can’t change the direction; so I sit with this and hope to find some sort of peace were there is none right now.

I was walking out of my office (if you call it that. It is really a corner that houses my stuff) and the security guard called for me. I thought surely that was a mistake. What could she possibly want with me, but she was very clear, “Mrs. Addink, I need you. I need your help.” I followed her into the vacuous stairwell with dusty light shining joylessly on faded paint. I matched her steps and she said, “I have a kid in my office, and he just got word that his baby girl died.” I stopped. There must be some mistake. I stopped on the stairs. Trying to deconstruct the sentence to come up with some other meaning. Any other meaning. I put my hand on my throat, “God. No.” I wanted to turn and run. I can’t go in and talk to this kid. Where is the counselor? Not me.

But I continued to follow her, and I saw the open door. With no volition, I walked into the dark office. And I saw two young men. One leaning on the chair, lovingly rubbing his friend’s back and another crumbled by the weight of pain. And although I recognized the young man who sat with the receiver to his ear, and hand over his eyes, I felt so strange and intrusive. He didn’t want ME there. I could not do anything.

“Nate, Mrs. Addink is going to sit with you. You can trust her. She is awesome. Everything will be ok,” and Marshall left her office, leaving me with these two young men, a stranger in the most intimate moment of grief.

I am not awesome. And he wasn’t going to trust me. And nothing was ok in his life. Nothing would be for a long time. My eyes narrowed at the words, wishing there was some way that I could snatch them from the air and stuff them in my pocket where they could not breath.

I pulled up a chair. I awkwardly but firmly put my hand on his arm. He did not tense. He allowed it. He hung up the phone. And I stumbled to introduce myself. “Hey, Nate. I think I met you in the hall once, and asked you to go to class.” Silence. His eyes shifted to acknowledge me and then slid away. They were red. A sharp contrast to his skin. “What happened?” Silence. A few quiet tears.

“Nate, I don’t know how you feel. But I remember a day that I was told my daughter would die. I remember how I felt. I was angry.”

Silence.

“I bet you want to punch a fucking wall. I did.” And he looked at me, and nodded yes.

Time is so easily manipulated by memory. I remember standing in the hallway at Children’s Mercy, as they rushed us to the Parent Room. The chaplain was there. No one would make eye contact with us. No one could answer any of our questions about Noelle’s life without their voices being thin and tight with tension. I was helpless. I was lost. I was grieving. They believed she would die. You can’t pull that memory from your body like tumor. It grew too deeply in your brain; there is no way to cut it out.

“How old was your baby?” Long silence.

“Three.”

“Years?”

“Months.”

I prayed, “God, get me out of this. I can’t do this. I am the wrong person. I am doing this all wrong.”

No divine intervention.

“Nate, how do you feel? Do you feel anything?”

“Anger?” Nod.

“Shock.” Nod.

“Nate….” I was grasping for the right thing to say. I felt like I had to say the right thing. “Nate. You are going to be angry. And that is ok. You will be angry at yourself, at God, at her mom…. And you won’t know what to do with all that anger. You will be sad. And you will ask all sorts of questions that are not fair to ask because there are no answers to those questions. You have to allow yourself to feel these things. You have to live this out without self destructing because the reality is, tomorrow you are going to wake up and your heart will be beating even if you don’t want it to.”

He was looking at me. It was not the right thing to say, but it was honest.

“Also, I hated it when people told me that everything would be ok. So, it won’t feel ok for a long time. But, you will breath again without hurting. And…” great hesitation. “Nate, I wanted to punch people in the stomach when they told me they were praying for me. Not because I didn’t believe them, but I was angry with God. And I didn’t want to hear it. But I know that was the greatest gift they could give me. So, I am going to say this anyway. You look pretty strong and my stomach isn’t in the best shape, so don’t hit me, ok? I am going to pray for you. Because God is near even if it doesn’t feel like it.”

His mouth turned up for a moment in almost a smile.

But there was no changing today. His daughter had died. He would have to deal with that as a parent. He would have to grieve. He had, when I asked him, who he could trust, to walk through this with him, been able to identify only two people. Two people in his entire existence that he could trust like that. Two. I felt so helpless. It all felt so wrong. I wanted to grab God by the collar, and say, “Really?” But God is too big for my hands and my understanding.

I watched these boys… these men… one a grieving father of eighteen walk down the hallway and I felt so small. And I cried silently, “God! Mercy!” Mercy. Mercy on us all. Mercy on Nate. Mercy on tomorrow and the next one hundred tomorrows. Mercy on his life. On this young mother’s life. Be present. Be near. And God, don’t be silent.

Tonight, it is snowing. Not enough to cover everything. Not enough to make everything beautiful and new. Just enough to thinly cover what we know. Maybe it is that way with peace right now. And tonight, Noelle is snoring in her bed. I know because I have checked on her twice already. I stood in the darkness of her room, and thanked God for life, and snow, and mercy. I also prayed for Nate. Again.

Chapter Books

There is something about watching a child learn how to read. How you take fragments of an alphabet, with sounds and character, and put them together to make words, and eventually meaning that tells us the truth about who we are as people or life or even God. I am watching this phenomenon with Bennett. And he is doing well. I am reminded, that sometimes the English language makes no sense. Sometimes you can’t just “sound it out” because the letters say all the wrong things to make the right sounds. And you just have to guess, memorize, and eventually know what some of these strange words really say. Bennett was reading a Frog and Toad book. He tripped through the reading, like a dance tripping on laces, but he did it. The book had chapters. He felt accomplishment in finishing a chapter. He made it through a story with plot and conflict, choices, friendships, and foolishness. And in the end he learned something. And although the chapters told different stories, they had the same connective tissue of loyalty and love.

So, this got me thinking about writing and living. Writers try with great diligence to create something that will loosen the strings that bind our understandings in the core of who we are as people with words. It is a grand ambition to create with intangible words, what is tangibly immortal. A true masterpiece. Few actually do it. And we are forever changed because some have. They are the words that are etched on our souls and breath inspiration to tired lungs, and crawl into the empty spaces of our brains and reside in undusted bookshelves of memory. The characters are ageless. They are perfectly flawed. They utter the words that make us scream, or breath, or weep; they make the same damned decisions every time we encounter them. With all their motion and change, they are static in who they are. Pages are immoveable. Someone created this. And we attempt to replicate for others a character that we can love, or a life that is so tragic that we connect so deeply with their loss. We always hope for their redemption. And sometimes, art-imitating life, redemption never comes. Their stories are woven together through chapters, like continents across the ocean that creates the entirety of our world.

And writing is like living. We are the characters. We have to learn this process by learning how to connect our reality with sounds to create words that somehow make sense. We will eventually tell our story. We hope to live in such a way that, when someone reads life, our life, they are able to understand the sounds that create words and images and dialogue. Eventually, we hope to leave the reader with meaning. We hope to live a story meaningfully. And if we are insightful enough, we will learn that we all have a story.

I heard a sermon not long ago, talking about Abraham’s story. It was a story of change. A story of leaving and wandering. A story of promise, betrayal, and eventually blessing. I was reminded that we are part of something bigger than what I experience on a day today. I was reminded that I am a part of a long history of who we are as a part of being God’s blessing. I was having this conversation with a friend who said, “Thank you for saying that. All this time, I had it all wrong. All this time, I thought it was my story. Really it was always God’s story and I have a small part in it.”

And I got to thinking about the structure of history and stories. They seem to exist on two dimensions. And I am amazed by this complication and weaving together of humanity. God is an amazing author that can create sub plots and paradox. I think of my story. I hear the echo of Isaac Anderson telling me that my story is to be a blessing on God’s time not my own, and sometimes I am encouraged by this. Usually I forget, and am overwhelmed by needs all around me, like floodwaters engulfing fields. Needs rise, and I am treading water in needs. And they are heavy. And I am tired of swimming. However, there are these moments that you climb out of the flood, and lay in the sun. There is hope there and lightness and rest. Enough to tread water with a sore heart.

See, we are all a part of a chapter book. And reading chapter books is a huge step in learning to read, learning to live. We are learning that sometimes life doesn’t make sense. You have to memorize, and guess, and hope that you are getting the meaning. You hope that you are contributing to the writing and the story, that your story will be read, and that your story is not in isolation. We live in such a way that life communicates the most beautiful heartbreak, hope, love letters, and tears, and grief ever lived. And ultimately, my story is God’s story. And I have a part in it. I have a part in it by simply existing. Our lives tell different stories, but they flow or trip together in such a way that makes sense only from a distance of years. So, I need to keep writing, contributing, and reading other’s story and looking for the connective tissues that allows us to flow chapter to chapter, person to person, life to life.

Taking Hope For a Jog

Version:1.0 StartHTML:0000000105 EndHTML:0000008177 StartFragment:0000002292 EndFragment:0000008141

There is something about the ending of a new year that forces you into a place of reflection whether you want to go or not. It is like being shipped off to your grandmother’s for a hot summer in West Texas with no air conditioning; you need to be there, but it is uncomfortable. It makes you sweat. So with the ending of last year, (which I have no mourning for it’s passing. Tap dancing on it’s grave.) I was in this place. You recognize things about yourself that you knew and forgot eleven months ago. But there is something in you that becomes insatiable for change.

Seriously, if I could make a t-shirt, “I survived 2011” and the fine print would say “barely”. So, I am excited about a new year. And with all that reflection and excitement, I found myself on an elliptical machine at the Y. It was packed. Driving into the parking lot, I was tempted to hit reverse and do some amazing movie like driving seen in only Bourne movies. (Which would have been sort of funny in a minivan). However, I parked and braved the masses.

I need to loose weight. Sort of the reality of the life. But it was the beginning of the year and I was supper reflective. I was on this machine, keeping a good pace. I was listening to my fantastic music, trying to make it all look effortless. The first problem is that I am not in great physical shape. I am an emotion eater, not an emotional runner. The second problem is that I am mildly ADD (don’t roll your eyes), so I was distracted. The good news is that I didn’t fall. In the art of observation, I saw all different types of people. All ages, races, and resistance settings. It was so hard to focus really because I wanted to watch them.

I had this realization amidst the sweat and anxiety. Some of them are the dedicated few that wear “Live Strong” bracelets. They get this world because it is their world. They have claimed it for the previous twelve months. Then there are the rest of us that, because of the newness of the year and the commitment to resolutions (no matter how fickle), have found themselves in the throws of the Y, like treading on the mills of foreign soil. But we are here for the same reason; we want to change. We want to claim life. And there is something hopeful in even having the desire to change. The hope that we could change, that change is even possible, drags people out of bed and asks them to take a jog.

So, the Y on the first week of January is this hopeful place. And hope is new, just like everything else with a new year. So, I though I would take it for a run. Regardless of where we find a hope for change, we are inspired by it. We hope that both sides of government will just get along. We hope that we can be kinder people. We hope that we will love well the people that we love the most. We hope that we will understand God more. We hope that the sick would be well. We hope that we would be better parents. You see this hope in places of worship, in schools, in homes, and yes even in the Y. It makes you want to live in hope as a location, as Tim Keel would say. At the very least, it makes you want to take hope for a jog, and maybe what we loose is the weight of cynicism that we have lived in the rest of the year. I need to loose that weight. It is certainly the reality of my life.

Game Night with Grace

Two nights ago, I sat and played a game with Bennett. I don’t know the last time we had time to do that. Just the two of us, to sit and play a game. I am usually to drowning in laundry, or the needs of his sisters, or I am just too brain dead to have the capacity to engage him. Because we are both worn out by the end of the day. We are both people that need space and patience, and by the end of the day, we normally don’t have either for one another.

Here is the reality. I abashedly admit this because moms are not supposed to say these things out loud. Sometimes Bennett is annoying. He is bossy and controlling. He whines. And he lacks the confidence to try new things on his own, which makes me sad and frustrated. Bennett is a spectrum person like we all are. Bennett is capable of being the person described, and also coexisting with another end of reality. He is acutely aware of when someone is hurting and responds to that hurt. He seeks peace. He never wants to miss anything. He is smart and effortlessly funny, in a very serious way. For example, while driving through the neighborhood, he saw a house that the chimney had fallen off. There was a gaping hole of dilapidation, he said, “I know what happened there. Santa was just too fat for that chimney.” Bam. Delivered straight-faced. He imitates voices well. The most amazing thing about Bennett (other than his obsession with BBC documentaries and profound knowledge of dinosaurs) is that he loves me. He loves me when I am a bad mom. He loves me in a way I don’t deserved to be loved. And he forgives me. He has grace pouring out his beautiful brown eyes. And when he looks at you with grace, you almost want to cry.

This particular night, I had him just to myself. And we played a silly game. I am not very good at playing. I am usually far too serious for all the reasons that I already described. My observations about my precious son are as follows: Bennett wants to do everything correctly. Perfectly. He also has the great capacity for encouragement and humor. He made me laugh as he wiggled his little body around the board. He had fantastic one-liners that made me smile deeply. Like in the wrinkles of my soul. Every time I would have a good move, he would rejoice with me, encourage me, “That was a good one, girl!” I watched his little fingers move with great care. He didn’t want to make any mistakes. He never does.

It was an Alice in the Looking Glass moment. I saw him, but I really saw me. Everything I love about myself and everything that makes me fearful and solemn. And I was gripped with such love and fear in that moment. See, when I look at Bennett, is so much like me that it hurts. Sometimes, when he yells, I hear my voice. When he cries because he is fearful to make a mistake, I hear my own fear. When he tells Dadrian, his younger brother, how to breath, I hear my own freakish issues of needing to control everything. When he lovingly tell me, “That was a good one, girl!” I hear echoes of my value in encouragement.

But Bennett is not me. Thank God. He is… well… something new. Again, Thank God. And although I may recognize parts of him that are painfully familiar, although I may be able to identify parts of life that will hurt him, parts that maybe I can help him through, he will be who he needs to be if I will continue recognize him and see him clearly. Isn’t that what we are supposed to do for one another? Parent, child, friend…. We are to love each other by recognizing who the other person is and what they need from us. And when do that, when we step away from our spectrum of perspectives and exist in a moment with someone, we are given a new reality of acceptance. And that reality changes who we are, how we play, how we see, how we hear and most importantly how we love. And loving another person is grace. And grace almost always wants to make you cry.

Christmas With Anne Lamott

Version:1.0 StartHTML:0000000105 EndHTML:0000007555 StartFragment:0000002292 EndFragment:0000007519

I really feel like I would like to sit and have coffee with Anne Lamott. I don’t really drink coffee. That seems pretentious. Maybe, we could meet for a fantastic vegan meal, or I could clumsily trip after her up the hill to where she feels most connected to God. Maybe I would remember better what it is like to feel connection to words, or God, or another person, or the air around me. I feel so suspended by this year, and all that it has held. I feel old and disconnected. I feel numb. But this week, I had time to read while my children slept. I was alone fighting my four children to let go of the day and sleep. Unfortunately, that battle was not for the restoration and rest of their own bodies but my own greedy need for space. So I read. Anne Lamott. And she may have saved my Christmas. I felt more sane, or at the very least less crazy. Which speaks volumes. Historic volumes.

She convinced me that I was human. And normal. Riddled with mistakes and failures. And somewhat like her. Which is fantastic when you convince yourself that you are a freak and a lonely one at that rate. She kindly reminded me that in my humanity, I held a cacophony of songs. Anger, grief, hope, fear, and faith no matter how fragile it seems. She reminded me that I have songs of worship to sing to a God that loves my spirit and that calls me to live and sing these songs. She reminded me that liberals can love Jesus, and do love Jesus. She reminded me that kids make you crazy and sometimes fuck is the most appropriate word. And that our children love us and forgive us more than we love and forgive ourselves. She confided, just me, that although she loved her son, he made her crazy. She reminded me of dogs and who they are to people. She encouraged me to make peace with my body and said plainly that you have to exercise everyday and that these two things can coexist. She talked to me about answering God’s insane calling. For her it was starting a Sunday School, for me… it is having four children that need so much. And that sometimes you just sit in shame, and God meets you there. And that church is a place to seek refuge because those people love Jesus and would like to love me.

When I read, I felt peaceful. I think God borrows other people’s words to speak to us. He borrowed Anne Lamott’s humor and gravity. And I missed God. And I missed me. And that people around me miss me. And, I have to breath my way out of this thing I feel choking me all the time these days. I remembered that I have friends that like her, and like me, and are like me. And when I don’t seek these people out, I feel like I am suffocating.

So, tonight I wrote a shitty rough draft. And I drank some wine. And I sat in the hallway listening to Iliana struggle to not vomit. I listened to Neil Young et all… and I prayed. And breathed. And made space for me to exist.