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.

Underground

...this reflection is from the Church of Our Saviour Youth Community's Weekly Update, I write a reflection each week for our community, a sweet friend thought it may be smart for me to publish them here.  Smart friends, it's good to keep them around...


Two weeks ago on my time off  I took a day to plant late spring and summer bulbs and bushes in our front yard. I wrote a few weeks ago about how I never got around to my grand plan of white tulips, well this was my second chance.  I spent an entire day with my hands deep in soil and my knees against the cold earth.

I learned quickly that a bulb planter is the best gardening tool invented and why people who garden are, no joke, amazing.  After pruning back unruly bushes, turning up the soil, and planing close to 100 bulbs and bushes I stood back to admire my work.  It looked like one big bare front garden.  

Then it started to rain.

Thankfully it has been raining steadily for the past two weeks so I know those deep planted beauties are being fed but my front yard still looks bleak.  I know that there is something happening beneath the surface but I can't see it, I know that soon there will be peony bushes and colorful flowers and green leaves but at the moment  it's all dirt.  Wet dirt.  

Does your life ever feel like my front yard?  You know that something is growing but you just can't see it popping above the surface.  The rain keeps coming, the storms blow through, and you know God is preparing something beautiful but it hasn't broken ground yet and you are left with nothing but the hope that the good thing is on it's way?

My plants are growing but for now it is all happening below the surface, beneath the soil, where only God can see.  God knows our hearts and sees the good things that are growing in us even before they become visible. 

These rains and storms we endure can be used to grow good things.  God can take even the worst that we walk through and transform it into something beautiful in us.  

 

Here it is.

I've been referring to the 'big bad news' for a while now and it just feels like it's time to write it.  To see it here.  To have it in words that I can read again.  I think I may have had to wait until the tomb was empty again.  Till I heard the Gospel read from the lips of a dear friend as my community surrounded me.  To remember the joy that Mary Magdalene felt when she realized that Jesus' body was not stolen but that he was standing before her.  I needed Easter for this.

My mom has Alzheimer's.   

She was diagnosed July 17th.

I have known in my heart for the past four years.  I've been losing her little bits at a time.  I held deep hope that there was another explanation, that there was a fix, a cure, a hope.  My mom has been blessed with the most amazing friends that have taken me in as a child of their own.

My Aunty Mary Alice actually called to tell me the news.

Can you imagine?  Calling your friend's child to share their single parent's diagnosis of a terminal illness when they live across the country.  That women gets all the gold stars and glasses of wine and bonus points there are.

Since July I have been everywhere.  I have cried every single day for weeks straight in the shower.  I have hidden from the reality of it in workouts and chocolate cake.  I have what-if'd and researched and banned myself from research and started the cycle all over again.

I have a large family but the reality of my childhood was that there were lots of people but my life was made up of my grandmother and mom.  They were my world, my memories, my family.  Grandma died in 2006.  I held my breath for all of high school and college awaiting her death, I had a slight break and now I'm back at it again, awaiting the loss of another parent.  But this time the loss happens differently.

I am already losing her.

There is no one left who holds the memories of my childhood.  There is no one left to tell my story to me.

When families gather and reminisce and remember the things you have forgotten you hate it and love it all at the same time.

I am realizing that what is forgotten is just that... forgotten.

Writing has always been my safe place, my therapy, my little world.

I am realizing it is now my memory box.  Each day I pray that I don't one day have to share this diagnosis with my own children but I don't know what lies ahead for me.  I do know that the memories matter.  The stories of our lives mean something.  I also know that this journey I am walking with my mom will change all of us.  I need to write about it, I need to also write down the stories of our kids and lives and keep them somewhere.  I need a place to put all that is inside of me.  There are at least 25 half written blog posts that have something that references my mom's disease so I haven't posted them.  Most 30 year olds don't have a mom with Alzheimer's but some do.  My children will not know my mom as I thought they would, but we are going to need to figure out how this looks for us.  We are going to have to pick up and live our new normal.

The real shit part is, we know what the end looks like.

The comforting and also shitty part is that we are not alone.  This disease is everywhere.

We have to make our way.

The one big rule we have as a family is to be honest and kind.  That also means being loving and vulnerable.  A part of me wants to hide my mom's disease.  I know that she does, too.  I am a little bit scared to write about it because I am outing her as well as me.  It's our disease.  I know lots of things will always be changing but being kind and honest are non-negotiables for us so I'm laying it all out.  WWBBD?  What Would Brené Brown Do?

So here we are.  Amazing things happening, hard things happening, this is being alive, I suppose.  The past nine month I have had the same hymn stuck in my head... It's God's annoying way of being present with me.  I would have preferred a mom without a terminal illness.

Blessed Assurance ...

1. Blessed assurance, Jesus is mine!
2. Oh, what a foretaste of glory divine!
3. Heir of salvation, purchase of God 
4. Born of His Spirit, Washed in His blood.
5. • This is my story, this is my song,
     Praising my Savior all the day long;
     This is my story, this is my song,
     Praising my Savior all the day long.
6. Perfect submission, perfect delight,
   Visions of rapture now burst on my sight;
   Angels, descending, bring from above
   Echoes of mercy, whispers of love.
7. Perfect submission, all is at rest,
   I in my Savior am happy and blest,
   Watching and waiting, looking above,
   Filled with His goodness, lost in His love.

Deac Man... You are ONE!

Deacon William,

It's hard to believe we have had you out in this world as part of our family for a whole year.  Your dad and I can't get over how fast it has gone.  It's a lot like when the doctor told me to push and I thought I had hours before you'd arrive like I had with your sister and three minutes later he tossed you up on to my chest and said, "that's a big boy, he asked for my keys on the way out!"

I know you will hear it from everyone else so you might as well hear it from me, I wanted you to be a girl.  Desperately.  I just wasn't sure I knew how to be a mom to a boy.  I cried in the ultrasound when they told us that you were you.  I will pay for a portion of your therapy later in life.  Everyone told me that as soon as I met you it would all change.  They were right.  I was annoyed at how right they were.  Your sister is me.  She is sassy and pretends she knows more than she actually does.  You, you are your father.  You were a gift to us that we didn't know we were going to need to unwrap this year.

I have heard before that siblings are the best gift you can give your children.  You and your sister are the best thing I have ever seen together.  I didn't get to grow up with your Uncle Toby.  He was 6 years older than me and we always lived in different houses.  Your dad grew up an only child.  He has been given the gift of siblings as an adult.  He is just getting to know your Aunty Amanda & Aunty Courtney and what a blessings they have already been!  It has been earth shattering for the two of us to watch the two of you because we just never had what you two have.  Tonight your sister fed you dinner.  She has taught you baby sign language.  She tells us what you need.  She knows you in ways that I fear we never will.  You two are bonded in a way that I prayed for from the moment that I knew you were growing inside of me.  I think that is why I had wanted you to be a girl.  I had believed that the only way you would be that close with your sister was if you were the same gender.

I was WRONG.

I am never wrong so this will be the last time in your whole entire life.

This year has been hard in so many ways... except for you.

You were born easy.  From the moment you flew out of me.

You ate (once I gave up trying to believe I could somehow breastfeed even though I knew I couldn't).

You slept (and continue to) through the night from an age that makes other moms hate me.

Even when you are sick, which is all the time because you are in daycare, you smile and play.  You had the flu last month and the nurse laughed that I had brought you in for the flu because you had a 'fever' of 98.9.  She said no one with the current flu has a fever that low... the test came back positive. No one except YOU.

Even at one day shy of one month old when you were hospitalized because you had a fever (because your parents just can't shield you from germs because we don't have time for it and you have a three year old sister who leaves the house) and the nurses just came in to play with you because you were the un-sickest sick baby in the unit so there was no actual nursing to do with you.

You did teach mommy a very good lesson during that whole fiasco.  Always wear cute clothes when going to the hospital with your child... pediatric doctors are very good looking.  Do not show up in old maternity pants and a dirty hoodie.  Thank you, dear child.

This year has been full of challenges and pain.  Pain I have never in my life felt before.  We have received news about your Tutu that will change her life and ours.  It nearly broke me.  In the moments when the fear and uncertainty began to eat me up there would be your face...

  

God has placed in you a spirit of joy I have never seen in another person.  I know that I was blessed with a well of happiness that is deep to draw on and I have been thankful for that my entire life but you, my sweet boy, make my well seem shallow.  At first I thought it was just me but I now know that you share it with everyone you are with.  Your teachers see it, too.  Aunty Jen sees it when she drops Leann off in your classroom each day.  You are happy.  Deep down, rooted in your soul, happy.  That gift is for you, but it is also for us.  God knew we needed you for what lies ahead.  Your dad and I agree that you will cause us great anxiety because you have no fear and love fun and do often resemble a small drunk college student but your happiness is infectious.

Last week we lost someone dear to us.  Your Aunty Jenn died of a really crappy disease.  It makes me really really sad that you won't remember her but I will have lots of stories to tell you and she is woven into who you are and who we are as a family and she is part of you.  She was one of the first people that knew you were growing inside of me.  She was there when your sister and you were baptized and blessed the home that you sleep in.  She came to the hospital when you were born and held you.  She had a special thing she did with her son, Chris, who you will know (and who will probably teach you things I don't want to know about) which was called noggin.  They would touch heads.  Towards the end it was the one sign of affection she could actively participate in.  The last time you saw her I had brought you to church because you were sick and I told her to stay away because I was not giving the ALS patient the flu.  She gave me her typical look of 'I don't care what you think I'll do what I like' and rolled over to you.  She loved you so.  I brought you closer and you leaned over to her and gave her a noggin.  It was love.

Deac, we want the world for you.  I was so nervous about having a boy because I feel lots of pressure to raise a good man.  Then I remembered I married one so a lot of that pressure is off because your daddy is really good at this raising a good man thing.  We want your life to be full.  We want you to find a partner that you love, a calling that fills your heart, and we want you to want us to be around you even if you are a drunk college student.  We want you to be a man who stands up for women. We want you to understand consent and teach it to the boys in the locker room.  We want you to break the stereotypes.  We know, pretty definitively, that you will be very tall and intimidating looking.  We want you to use that for good and not evil.  People will think you are a good old boy, like they think your dad is, we want you to surprise them.  We want you to use words like gender stereotypes and penis and vagina.  We want you to see people for their hearts and not their physical attributes or social standing.  We want you to decide if college is right for you or if being a mechanic would make your heart happier.  We want you to fall in love with Jesus and find out why He made you the happiest kid on the planet.

And even though your parents are constantly trying to break gender norms by dressing you like this...

I'm so glad you were born you.  

I love you.