Aubrey Grace, you are F I V E

My darling girl,

Today you turned five.  I laid in bed with you this morning as we watched the time tick by to your exact moment of birth, 6:40 am.  Your sweet self made me WAIT to wake up your brother so you could walk into his room, wake him up, hand him his toothbrush in his crib, and create a song about it being your birthday.

We met you at school later on to eat lunch with you and deliver cupcakes and you smiled and ate and were all kinds of Kindergarten and FIVE.  I looked around the room to see so many children that you have known and loved for years that make up your elementary school class.  Neighbors and ballet friends and preschool buddies and church people.  It reminded me of what it was like for me growing up in a small town (that is no longer such a small town) and how being surrounded by that much love seems normal until you leave it.

Last night you prayed for Dad, Mom, Deacon, Dixie, and your friends and your friends and your friends.  Because saying it once wouldn't cover all of them.

Hold tight to that, girl.  Cling to it.  YOU ARE SO LOVED.

This past year has brought on change and transition and tears and joy. At each turn you responded with an open heart and the assumption that everything was okay.  I am in awe of the ways you feel safe in this world ... I'm also jealous of it.

A few months ago we were praying before bed and I prayed all that I normally do with you, that you grown in mind body and spirit... I thanked God for the girl you are, always cautious of my words and that I am focusing on your insides.  You interjected, "thank you God for making me so pretty."

Well there it is.

My own fears about believing in yourself and being more than a body can be so extreme that I forgot that there is good in knowing your beauty.  You are my mini-me, and when I see your outward beauty it forces me to recognize my own.

I grew up different from you, my fierce girl.  I was loud and scared. I was loud because I was scared. I was overweight and different and alone.  That me still exists so close to my skin that I am aware of it at all the best and worst moments.  I can taste what it felt like to be who I was and it is sometimes nearer to me than my true self.




Each day our goal is to let you be as true to you as possible.
Feel all.  the.  things.
Do all.  the.  things.
Say all.  the.  things.
We just don't want you to need to BE all the things, only the ones that speak to your heart.

You are silly and kind and compassionate.  You've already become every hope we had for you.  If you are those things we really don't care about the rest.  Ms. Jayme told me that the other day you helped a student who struggles in PE.  She was asked to do something that was beyond her capabilities and instead of watch her struggle you jumped in and walked alongside her helping her succeed.

All the pride.

That is all you need in life, my girl.  To be kind. Honestly, nothing else matters. (I am sure I will act like other stuff does but it's my mom job to do that: i.e. homework, a job, brushing your teeth).

This year was amazing for you.  You discovered the awesome reality of living in our neighborhood and all the adventure and fun that holds.  We went on our first ever family vacation, you did ballet, and went to music festivals, and grew and grew and grew.


You are a WHOLE HAND now.  You are definitely a whole person.  You made us a family when you were born and you glue us together on our worst and best days.

I love you... more, my sweet girl.

Mama

Today Hurts

Today hurts.  In a deep, unfathomable way that I was not prepared for.

Today hurts because I went to an all-girls school in the 7th grade that enforced my innate knowledge that I could achieve anything. I have classmates changing this world; morticians, lawyers, musicians, moms, cancer survivors, and teachers.  Although an Episcopal school I graduated the only Episcopalian in my class. An understanding of different religions and traditions was celebrated whenever possible.  I began a beautiful and complex walk with the Trinity and was given a chance to experience and be present for the joy that other faith traditions embody.  Many girls I graduated with were first generation immigrants to this country who held the weight of the world on their shoulders as their families had left everything and everyone to give them the gift of being an American.   As a woman and Believer... today hurts.

Today hurts because 14 years ago I left my bubble of life on an island to go to a university that prided itself on 'educating the people the world needs most'.   While I was prepared for culture shock and ready to fight battles with the 'good old boys' what I encountered was humbling.  Boys raised on deer hunting, Sunday mass, and big trucks showed up for me my freshman year when I performed The Moaner in the Vagina Monologues and had an orgasm on stage.  They pulled those hats down real low and stared at their shoes but damn if they didn't stay, hug me afterwards, and inform me they were traumatized but proud of me.  As a person who has stood witness to kind, powerful, and supportive men... today hurts.

Today hurts because I have sat in dorm rooms, across Panera tables, and in sanctuaries as people of God have shared with me their sexual orientation and I have stood witness to the power that resides in being your true self.  I have held space, cried, and prayed with a family as their child walked the treacherous road of transitioning in high school while watching as she blossomed into the child of God she is with the support of a whole parish.  I have watched friends find partners, marry, and have children.  As an ally and friend... today hurts.

Today hurts because I am a survivor of sexual assault.  Those words spewed so freely from my president-elect's mouth cause the fear, pain, and anxiety that is controlled by therapy and support to rise up.  I have sat in countless hospital rooms with women and men who have been assaulted and held hands, wiped tears, and listened as they work to claim their story and take one step forward.  I have served as an advocate as survivors process their trauma in the ER and as they contemplate suicide on a hotline.  I have seen the power in reclaiming our bodies and owning our story.  As someone with a pussy and a story... today hurts.

Today hurts because I have taught in public classrooms, churches, and in my home that kindness counts.  That 'not being an asshole' is actually the best rule of life.  That in the end, the way we treat each other matters more than anything else in the world.  As an minister, educator, and mom... today hurts.

As we sit in the reality that is today I just needed to name the ways this is not what I wanted for the place I call home.  The people I call family.  The humans who call me mom.

And this hurt... this is coming from a white woman of privilege.  I am angry and afraid but can only be witness to the fear and anger of the people I love who are LGBT, Muslim, immigrants, people of color, disabled, and in the armed forces.  I see you.  I am not you but I am with you.

This is not what I wanted for you.  Or me.

We are better than this.

We belong to each other.

What it's like to have a mom with dementia.

I can not count the number of times I have heard, "your mom is so proud of you."

I didn't let it sink in enough.

I'm angry at myself for that.  I wish I had listened and known and felt the weight of that.  I wish I had let it root deeper in my soul.  

My mom gave herself completely to me.  I had the best education, the most amazing travels, the tastiest birthday cakes.  I knew when I messed up but I always also knew I was loved.

Then... dementia.

Dementia is a thief and a liar and a pretty serious asshole.  

Right as I became a mother my own began to slip away.

I was 27 when I knew something was really wrong... most clearly when she flew back to her home hours before I gave birth to my first baby, missing it.

I was 30 when she was diagnosed with Alzheimer's, after years of long distance concern, hours upon hours of testing and countless appointments with the top neurologists of the state.

I was 32 (last Wednesday) when my mom forgot my birthday completely for the first time.  The past few years have been shaky and she has called late or sent gifts very early but this year was the first time in my life I didn't hear the words slip from her lips, I fear I never will again.  

One of her dearest friends told her it was my birthday (bless those friends) and still she wasn't able to hold that memory in her brain long enough for it to mean anything.  She has a huge clock in her house that states the month and day but seeing August 10th didn't bring anything up for her, it didn't remind her of that summer day she almost died having me or the 31 other August 10ths we've had eating cake for breakfast.  

It's just one more way I've lost my mom.  

As painful as the death of my birthday is it's the death of who I am to her that hurts most.  Being a 66 year old woman with dementia is frustrating and unfair.  Since her brain can't process that logically anymore and there is shame and pain and so many other things wrapped up in it, her deteriorating brain has made me the bad guy.  Nurses and professionals tell me it's normal.  They tell me that telling friends that it is my fault and that she doesn't have dementia and lives in a prison is normal. That it's a way to protect herself from reality.  A reality her brain can't process anymore.

She doesn't lie to hurt, she doesn't lie, she tells a story that makes sense to her.  Why would she move if it wasn't for me?  Her mind can't identify that it can't function... it's the painful reality of this disease.  She talks about wanting to go home but I know what she really wants is to go back to BEFORE.  She has her credit card and a phone and internet but has lost the ability to put it all together.  If she was able to be on her own she would have bought a ticket and moved.

Oh, how I wish she had that capacity still.  If she did, she wouldn't forget my birthday, or that I dropped her off at home two hours ago, or that we saw each other three times last week.

Instead, her brain tells her other things; that she hasn't seen me in months, that I am away on a 6 week vacation (like most youth ministers with two kids under 5 take), that I have told her horrible things about staying here till she dies, things that my mom would never believe but things that this mom has made her reality.

The moments of pain and sadness are quick and fleeting for her, often brought about by interactions with people from her past who don't understand completely, that don't yet know how to redirect her. Moments later she is off on a walk or out shopping with her friends or participating in some crazy game downstairs... but me... I don't forget it.  

I don't forget how angry she was with me for that minute.

I don't forget that there are people all over the place who think I've done a horrible thing to my mother when what I've done is keep her safe, love her, protect her, and give everything I have. They don't see where she lives.  They don't see that down the hall are practicing lawyers and researchers getting up each day and going to work. That daily there is an outing and activity, all of which she joyfully participates in.  That I've done everything in my power to give her as much independence as possible.  That we talked about all this before she progressed and it is what she wanted.

I don't forget that she almost died giving birth to me.
That she told me every night that she loved me to the moon and back.
That my life is what it is because of her.

I don't forget that no matter how much she forgets... I can remember for the both of us.  

So a few days after my birthday I took mom and AG on a girls shopping trip... because if she could remember, I am sure this is what we would have done.  She didn't know it was my way of celebrating my birthday with her, and it's okay that she didn't, because I did.  

It's Complicated: Mother's Day for mamas without their mama

It's Mother's Day.

And I'm feeling... torn.

When I was young this holiday seemed easy.  Raised by a single mom and my grandmother in a family and culture where the women were always the ones to stay, raise, work, show-up; mother's day was an easy YES.  It was brunch and heartfelt cards and gratitude.

Two years ago, after a long stretch of our strong relationship deteriorating, my mom was diagnosed with Alzheimer's.  I was relieved that my mom hadn't intentionally turned her back on me.  I was devastated that there was no going back.  We had begun the process of a long goodbye.  Although diagnosed a few months after the birth of my second baby, I began to really lose my mom during my first pregnancy.  Her erratic behavior and changed self was revealed most painfully as she told me 'she couldn't wait any longer' and got on a plane to head home just hours before I went into labor.  Unclear at the time what had happened to my over-involved and dedicated mother it was the most painful and heartbreaking moment of my life.  Alone across the ocean and country from any family, feeling abandoned and confused, I gave birth in the midst of feeling the unfathomable pain of the crumbing of my relationship with my only parent while becoming one myself.  I felt both the greatest love and the greatest emptiness I could fathom simultaneously.

There is now a limit on the time I have with my mother on this earth.  Yet, so much of her is already gone.  She still knows who I am and my children's names but her ability to mother has left her.  I walk a fine line of working to give my mom the very best care possible while ignoring the pain and bitterness in still needing a mother I will never again have but whose body stands in-front of me.

At a young age my mother taught me the power of a community of women.  Surrounded constantly by strong women as a young girl and seeing the female friendships that filled her life, I have been blessed to be surrounded by female friendships that not only sustain me but transform me.  A woman once told me that she 'couldn't stand women, they were horrible' and I was blindsided.  She is the only woman I have ever met that I struggle deeply to find compassion for and after hearing her philosophy on women it seemed clear why.

See, you, my sisters, are my kindness.  You are my heart.  You are my continual reminder of grace and redemption. You have taught me to love my body, my annoying children, and exercise.  You are the other side of the conversation that most new mamas would have with their own mother.  You fix my hair and tell me when it's time to get new clothes.  You hold my babies and discipline them.  You have fed me, celebrated me, and more times than I can ever count; cried with me.

I was afraid after leaving college that I would never make easy female friends again.  While it hasn't been easy it has happened.  And somehow, in that way God does things that don't make sense till later, almost all of them have mothers who have died.   The others have impossibly complicated relationships with their moms.  It seemed odd to me at first, this collection of women I had who had become mamas after theirs had died or whose moms didn't know how to love them in the way they needed.  Then I realized that sometimes your mom looks like your best friend.

As we walk through this day social media has been a glaring reminder of the emptiness that echoes in this Sunday.  There is a plethora of profile picture changes with beautiful people I adore and their mamas.  Yet, when I look closer, there is a clear absence of that from my dearest friends.  They may post a picture of their mama that I've seen before in a frame on a table on their wedding day.  Or there may be nothing, because it's all too painful. We are not the people that take girls trips with our moms; some because it's impossible, others because there is high possibility our therapy bills would be astronomical if we did.


We are the mamas who woke up this morning and refused to do nothing today because not being there for our kids is our most painful reality and biggest fear.  We are the mamas that texted each other with a simple 'I understand' and 'You are doing this'.  We are the mamas who desperately tried to get our children to take a picture with us because we hope someday our children will want to update their space-age social media with a picture of us all together and it won't cause them pain or heartbreak.  We pray we are raising children for which this holiday is anything but complicated.  We take extreme precaution when it comes to our health, screenings, and our words.  We are the mamas who want to do it different and the same and possibly pass over this day all together except when we get to have some quiet moments with our children who redeem it all.

In a few hours I will pick my mom up for the second time today to celebrate.  She quite possibly will not remember that we were together just a few hours ago.  I will take pictures with her that I fear will appear at her funeral and choke back tears as she opens her gifts not knowing how many more I will buy or she will open.  Then, after she is back home safe in her assisted living community I will call a girlfriend, cry, and lament the complicated ways that this day fills us up and destroys us.  The ways that motherhood is our greatest joy and mirrors our most painful losses.

Today is merely a marker of that pain.  For me it is about the loss of my mother.  For others the loss of their child or the children they were never able to bear.  For some that I love it is the reminder that the bodies they were born with that did not match their hearts or minds can be changed in many ways but never so that they can be pregnant.  For some mamas it is the pain of doing it single-handed and planning their own mother's day.  For still others it is the heartbreaking reality that a child they gave up for adoption is celebrating with another mama.  For others that there is another mama who carried their baby grieving while you receive the cards and flowers.

Sisters, you are not alone.  Today you are heavy on my heart and I am grateful for the community you are that has knit me in so closely that no matter how hard and complicated this all is, I do not fall.

Deac... you are T W O (and a 1.5 months)

Deac-man,

We have gotten to be your parents for TWO years.  I write to you and your sister on each of your birthdays, if you notice today's date it is about a month and a half since you turned two.

This is life with you... I play a lot of catch-up but it's worth it.

See, you are a handful.  In all the best ways.  You are smarter than I may want you to be, you are ridiculously active, and you want to experience all of life.  You may look just like your daddy but your heart is a mirror image of mine.  You love everything completely and often tell us who it is you adore that day.  This past week it has been our neighbor Joseph.  We have heard 'I love Joseph' at least 300 times this week.  You go full force until bedtime, which I must admit, I am grateful for at the end of each day.

This year has been a ride for mommy.  Someday you will hear about all the reasons why but right now your sweet heart just needs to know one thing... without you and your sister this last year I don't think I would have survived.  There were days you two were the only thing that got me out of bed and the only reason I felt like pushing on.  I've learned a lot about being a grown-up this year.  I've learned that life does not turn out like we hope it will.  I've learned that no one is perfect.  I've also learned that when your life hits rock bottom-- there you will find Jesus, true friends, and more strength than you knew existed inside of you.  I want to guard you from every bad thing that could ever happen but I know I can't.  What I do know is that you can survive anything, no matter how hard, because of what already lies inside of you.

This year we got to know YOU.  You became a person.  A person with thoughts, curiosities, and lots and lots of opinions. You love to be outside.  You love dirt, exploring, and hanging with the big kids.  Where you sister was always sure to stay close to us when we were in public or outdoors YOU have no concern for such things.  You are happy to run to the mailbox at the end of the street without concern for where we are.  Sometimes we get funny looks from neighbors we don't know as we allow you a pretty long leash (not a real one, although we have considered it)... they just don't understand your wild heart.  You eat dirt... lots of it.  At one point this past year I found you in the backyard with your sister eating what I thought was dirt... it was dog poop.  That didn't upset you, what made you really mad was that I forced you to come inside and wash your hands.

In October we went to Festy in Nelson County.  We felt like you were finally old enough for a weekend of camping at a music festival.  Saturday night as Brett Dennen played I thought you were with dad, dad thought you were with me, and you were actually making your way into the mob at the front of the concert stage.  We found you (thank God!) but you, my boy, are exactly that experience.  You walk straight into life.  You are unafraid of what could be and only see the joy that is possible.  

Oh... and you are funny.  I know when you are old enough to read this it will be okay to tell you: your dad and I struggle daily to discipline you because most of the naughty stuff you do makes us laugh.  So.  Hard.  

This year we have discovered you are VERY afraid of flying bugs.  Except... Peter.  The ladybug we named at dinner one night as it crawled on our dining room wall.  We named it so we wouldn't have to get up and deal with it since you usually loose you mind around such small flying monsters.  This year could just be called the year of Peter.  You talk to any ladybug (all Peter) as if they are your best friend.  You offer Peter parts of your dinner and sometimes just start crying because you can't find him.  It's mostly adorable and sometimes obnoxious. It's your compassionate heart manifested in a relationship with a ladybug.  

Watching you become a person melts me.  So much of who you are is because of your sister.  Aubrey loves you more than I knew possible.  She teaches you, plays with you, and parents you.  She leads your daily yoga practices (you two are weird). The love you two share makes me wonder how we were whole without you.  You two are like two sides to a coin.  You need each other.  You make each other better.  Part of the hard this year was moving your Tutu here from Hawaii and dealing with the crappy disease that is stealing her from us.  You and AG... you are the light in Tutu's life.  You don't know what she has forgotten, you don't know what it used to be like, you just know you love her so so much and she loves you back.  You and Tutu have created a beautiful bond.  My heart breaks knowing that someday, and I don't know how soon that will be, she will not know you.  You cry each time we drop her off at home (multiple times a week) and every-time we turn to go to school and not to get her you throw a fit.  Thank you for reminding me how to love so fully.  Thank you for making this part of her life so joyful.

Your daddy loves your Tutu lots, too.  He has done a million things this last year to make her life here good.  She hasn't always had the best experiences with men, you and your dad are a deep healing for her.  Your dad is working really hard to teach you about being a man.  He is learning a lot as he goes.  This year has been big for your dad.  He has transformed in ways I can't even explain.  Much of that is because of you, my boy.  See... when daddy looks at you he sees himself (we all do!) and he wants to give you the life he hasn't always had.  He wants to honor your unique self in ways that don't force you to conform to this world.  He wants you to dress like the princess when you want to, to play trucks in a tiara, and he wants you to FEEL.  To use your words and express your emotions and we are working hard to hear them when you do that.  You are daddy's redemption.  The best parts of him shine though you and parts of your dad I didn't even know existed light up when he is with you and your sister.  You will never know what he was like before, but this life has been hard.  Dad had to overcome and be reborn.  The world will push it's expectations on you like it has on your dad.  You will also be a tall, white, burly man someday.  At first sight people will most likely see you as macho, intimidating, and fear you.  It will be your job to use the body that God has placed you in to speak up for those other people will assume you are against.  The only things we hope you are against are injustice, cruelty, and a closed mind.

No pressure.  

You are already living large in your third year on this planet.  Today you got in some trouble for repeatedly kicking your sister and sent to time-out; you told me 'go to work, Mama' because you were just sick of my parenting you.  Too bad, my man, you can't get rid of me.  It is a lot of working parenting you.  All of it is worth it.  I pray daily that we can cultivate what is innate in you.  When you feel something, it is expressed.  If you want it, you go for it.  If no pants, a princess helmet, and dinosaur shoes are what you want to wear...  you rock it.  You color on chairs and eat dirt and dance whenever you hear music.

You make us a better family.

You are teaching me to live without fear and to love without limits.

We love you, silly boy, more than you will ever know.  Thank you for saving me this year.

I'm so proud to be your mommy.

Aubrey Grace is F O U R

Aubrey Gracie,

It seems impossible to me that it has been four years since your sunrise arrival.  It also seems impossible to me that there was life before you.  Your dad and I know that we squandered that time.  We will talk all about that someday if you want children.

Let's just say we never appreciated the silence or free time or lack of picking up other people's crap-- both figuratively and literally.  

This past year has been big for you.  You changed from a toddler to a kid.  You've become a person.  You have ideas and opinions and make decisions.

And my oh my have you found your voice.  

We were warned that three was different (read:difficult) but we were not quite sure why.  It seems like the root of it is that at age three, you become an individual.  This year you, Aubrey Grace Rutledge, became yourself.  A loyal and protective sister, a lover of animals, an empathetic friend, and a hilarious human.  

You love your brother with a fire I didn't know possible.  Each morning you insist that you wake him up, often by crawling into his crib.  You comfort him, much to our dismay, when we discipline him and he cries telling him that 'it will be okay' (and basically that you understand that you both have crazy parents and will deal with us together). You think he is the best playmate around.  The other day you two were playing 'backpack'.  I am not at all sure of the rules of the game but it unfolded as the two of you crawling on the floor on top of each other till one or both of you were in tears.  Repeat.

Each night after dinner grace you love to end us with a grace that you've taken from a rhyme you say at school before you eat.  Normally it goes: We love our bread, we love our butter, but most of all... we love each other.  Last week you ended it with ...but most of all I love my brother.

You two were made for each other.

When I pick you both up from school, Deac often runs straight into your arms.  Your love for each other is the deepest comfort I have in life.  I know that no matter what life hands us... you two have each other.

And your heart...

I'm so sorry that you inherited mine.  We feel it all, don't we?  You love my dog so much she has become your dog.  Everything breaks our hearts open.  We feel the whole world's pain and joy.  You have started singing the things you see (the world is our musical stage)-- It's scary for mama to see herself in you sometimes because I know how this big world can eat up sensitive people like us.  But, I also know that we must must stay soft because the world needs more soft.

There is so much ahead of us, my girl.  With a Tutu with Alzheimer's and a mama that feels it all and everything that we've walked through as a family this year-- this road ahead is bound to be winding and hard and full of joy and pain.  But this year one thing has happened, you have become you and we have become more of a family than I ever knew we could be.  And we are a family because of you.  That morning, four years ago, when the sun rose and you were born-- our lives filled with a light that shines even in my darkest times.  You are my partner in crime and cookies-- you not only look exactly like me, you are my heart walking around in this world.  I am so proud of who you are.

You are my sunshine.

I love you... more.  

When shit gets terminal

*I am sure y'all can understand my need to use a good old swear word in the title as well as throughout this blog post.  Thank you.  Sometimes nothing else will do.  See below for more information.

The past few years I have become versed in the crappy language that is terminal illness.  Not in a medical way but in an emotional way.  In a friend, daughter, minister, cry-partner, swear repeater, sort of way.

Shit got terminal with cancer and I lost a friend who spent the last year of his life teaching teenagers about Jesus' healing ministries, redeeming love, and grace... with conviction and honesty.

Shit got terminal with ALS and my co-worker and soul sarcasm sister warrior-ed her way through three and a half years of growing a ministry while her body declined.

Shit got terminal who knows how many years ago when Alzheimer's started affecting my mom's brain and I knew it and the fight for diagnosis came to light last July with the phone call that solidified that before I have two kids in elementary school my mom will not know who I am.

There's my street cred.  Three families, each of us linked.  Each having a minister (ordained and lay) as part of the immediate circle.  They are my people.  We have each received unfathomable grace and kindness from others and have also experienced things through these journeys that make you want to facepalm and press the rewind button for others.  It has mostly been the grace and kindness.  That grace and kindness has been the only thing to get me out of bed and put on pants with buttons and keep being a person on the hard days.  It has made me know I can carry on through this journey where I don't get to hope for a different outcome because there is no other outcome.  Terminal: predicted to lead to death, especially slowly; incurable.

That slowly part, that's the worst sometimes... and that's why we need you to be there for us.  We know it's scary and so easy to do stupid crap... so here is some help.

First off, if it's you getting a diagnosis or your person (spouse, parent, kid) you go ahead and do whatever the hell you want.  This list is NOT for you.  This list is for everyone else around you.

Whatever you need to do is RIGHT.

Just go ahead and pass this on to those that need some guidance.

So what are you supposed to do when shit gets terminal?  
So far.. here is I've learned...

1.  First off... READ THIS it is by far the best advice I have ever read about not saying dumb crap.  My friend Jenn sent it around soon after her diagnosis of ALS.  We referred to if often throughout the next three years.  Jenn loved to swear, it just made her feel better (see #2) and so we substituted the word shit for dump.  Shit out.  At her funeral I told her husband I was going to make him a sign for the receiving line that read..."DON'T SHIT ON ME".

2.  Follow their lead.  And LISTEN.  Jenn needed her friends to echo a good old 'this is shit' with her when ALS took another precious thing from her life.  When she had to buy a stupid mini-van for her stupid wheelchair (she detested mini-vans) we used all. the. swears.  multiple times.  Because that is what she needed.  When Michael, my friend and a high school Sunday School teacher was dying of cancer he got a lesson on miraculous healing in the rotation of lessons and I asked him if he was 'sure' he wanted to teach it, he made it clear that he had this and don't try to protect him from what God was doing.  After that, when he somehow got ALL the healing stories (by total chance that is only God being God) I just let it be and he changed those kids forever.  When someone who is not being healed physically by God is teaching you about God's healing-- shit gets real.  I needed to follow Michael's lead.

3.  Let their caregivers be their caregivers.  Be what you were the day before they were diagnosed: best friend, workout buddy, bitchy sister-in-law, fantasy football competitor, awkward joke making co-worker.  Just because someone gets a diagnosis does not give the world free reign to enter their space, world, home, and life.  It also doesn't mean they don't still need to laugh, work-out, and hate their in-laws... give them that!  They still have boundaries.  There may be things your friend needs that they ask for help with that is totally appropriate for you to be a part of because of what you are.  Jenn and I were girlfriends so I helped her into the bathroom sometimes when her mobility was changing.  I also go to the bathroom with my girlfriends who don't have ALS.  It's a thing we women do.  Hello-- we need a place to talk about our husbands where they can't hear us!  There are lots of details about having a terminal illness that mean things will change and that person will need help with things... if you are the person they want to help them, they will ask you.  Give them space and privacy and grace.

4.  Stop googling their illness.  You get to do it one time.  You do not get to tell them about anything you read, they have already out-googled you anyway.

5.  Don't ask 'what can I do?' just do what you do.  Two weeks after my mom was diagnosed with the big ALZ one of my dearest friends called me.  She was one of the first people I called after finding out the news and she did all the right friend things, she had all the comforting words and was amazing but I could not tell you what she said DOD (day of diagnosis) but that follow up call I will never forget, she called to tell me that she had just pre-read the top Alzheimer's books for me and to get a pen and she would tell me which I should read now and which I should probably wait a bit to read because they would probably be too much for where I was at in my head.  She is a researcher.  She went straight to her gifts and her knowledge of my emotional-basketcaseness.  SHE FREAKING READ MULTIPLE BOOKS ON ALZHEIMER'S FOR ME.  It was exactly what I needed.  She was able to get on my case when I didn't read what I should and then support me when I ugly cried and sent her nasty text messages all the way through Still Alice.  When you ask 'what can I do?' we don't know how to respond.  Usually you already have an idea... if it's not boundary breaking, go ahead and  do it.

6.  Food is not always the answer. (this one is just practical, sorry) Meal are a blessing and a curse.  Always always ask a family if they want food.  If they need meals put together have an organized method of getting people signed up (Meal Train or Take Them a Meal) Have a cooler at the front door to drop the meal in and leave -- don't have people stop to talk. It seriously makes it hard to have any kind of functioning life when people are trying to talk to you (probably about dying) while bringing you pasta and cake.

7.  Don't make it all about them.  There is this anxiety that once someone has a terminal diagnosis we can't share our problems with them because they are so minuscule in comparison to their 'fate'.  Reality is... we are all terminal.  It's isolating to suddenly be told your life will be shorter than you had probably thought and then all your friends stop talking to you about their lives.  Without mutual sharing there is no way a relationship can grow.  By 'protecting' the person you love and not telling them your shit you are actually taking away more of their life... you are taking away meaningful relationships of mutual give and take.  You are not allowing them to care for you.  They have no control over their own illness but they do have the ability to do lots of things, most of all, love and love well.  By hiding your own problems you are treating them as if they are already dead.  You are cutting their life shorter than it is already being cut.  One of the greatest gifts Jenn gave me was a letter she wrote my mom two weeks before she died.  I haven't given it to my mom yet, I may never, I think Jenn knew that.  I know she actually wrote it for me.  She sent it to me with my mom's name as the recipient and mine and my husband and kid's names in it but she also published it on her blog.  Her friendship and love changed me, she helped me through my worst shit even when she was days away form her own death.  

8.  If you are close enough, don't be afraid to go there.  Physically and emotionally.  Sometimes death is not pretty.  Most of the time it is beautiful.  If your person wants to see you, see them.  You won't regret going but you will always regret not going.  That's the physical.  If you have the emotional relationship ask the hard questions about the kids, the spouse, the funeral.  Not the ones that are outside of your purview but the ones that are.  I have found (I hate at 30 years old I have something 'I say' to the people I love dying before they should ) that "What do you want/need me to do for _________?" They have thought about it.  If they have something, they will tell you.

9.  Their closest people will never heal.  I was very scared after Michael died to say the wrong thing to his three young children.  His wife told me something that has changed me forever, "we are never not thinking of him, so if you bring him up, you are not opening up a closed wound."  I have talked to so many people about this.  Friends who lost their moms 20+ years ago agree whole-heartedly.  When the 'after' comes, when the ugly crying funeral ends and the meals have stopped and everyone else's life goes back to normal, if you are very close with the person who died or that family, keep talking about them.  Keep checking in.  Holidays are going to just blow for a (possibly long) while.  Think about how you can recognize that.  Being thoughtful, sending a card, recognizing that you recognize there is a hole, means something.

10.  Noun: A point of connection. (Did you see that part of the definition way down there at the bottom, it's the science part so I would normally ignore it)  That's the real kicker with terminal illness, it brings out the darn most hard-core amazing in people.  The community that comes to be in the midst of a terminal illness is earth-shatteringly beautiful at times.  Brutiful as my bestie Glennon Doyle would say.  There is growth and bonding and faith that grows out of the loss of one of our own.  This does not mean that for one small second you are ever allowed to say, "this is God's plan".  God can certainly make a flower grow up out of a pile of shit but it's still a pile of shit.  ALS, cancer, graduations missing a parent, spouses who planned on forever burying their beloved before they have even received the AARP card... all those things are not from God.  God does some amazing stuff with the crap that happens and sometimes in the midst of the hard we have to search for the good things God is giving us to sustain us.  Connection, support, love, those are things to cling to.  Stay away from false promises of healing and words that often hurt more than you could understand like, "this was God's plan" or "they are in a better place" and sweet baby Jesus please don't say to a family after their loved one has died, "at least now you can move on".  That makes me want to punch you... in the most loving minister way that I know how.  So maybe just button up your lip and figure out how to best connect with love and support.  You don't need to apply a bandaid to an amputated limb... it won't help.

Also, I'm so sorry.  I'm sorry someone you love is dying before they are old and crotchety and can tell stories to their grandkids.  And if it's you, I'm sorry you are not going to be old and crotchety and tell stories to your grandkids.

The flower that has grown from the shit for me... I have no doubt that there is something else on the other side of this.  I have no words to tell you how I know this but spend some quality time with someone as they near the end of their earthly life... they will show you.