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.

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.