“I think it pisses God off if you walk by the color purple in a field somewhere and don’t notice it.” ~Alice Walker, The Color Purple

[This post has been removed by one mama who is very sorry for writing about her favorite daughter without her daughter’s permission.]


The wind switched 360 degrees.  ~Mike Shannan

We busted right past September 18th, 2015 with only a few minor meltdowns.  The meltdowns were related to the anniversary of our dad’s death and blah blah blah.

I’m tired of it.  We’re all tired of it.

It being … blah blah blah.

I’ve decided it’s time to ensure that the Marcus Family Household, via my big mouth, is not defined singularly by struggle and grief and constant wondering what is happening as life noodles around.

I have to admit that I’ve felt defined by those things of late.

Let’s be honest, I’ve wondered what is happening as life noodles around for approximately the last 42 years.  Or say 41, I think I was fine until Rob was born.  Ahhhhahahahaha.

I have to admit that I have a choice in what defines us, in what is on my mind and heart and especially, in which words I let out of my big mouth or my texting fingers.

For the sake of all that is good and holy, or at least for my marriage and friendships and family ties (which are, actually, all that is good and holy in my life), I am compelled to bring the loveliness of our life to the forefront.

We’re going to spend time in that space for a bit.  Even though there are more anniversaries of  death to come.  Even though there are birthdays and holidays to be spent without our parents.  Even though the dog will continue to be a terrorist in our home.  There will be sadness.  I intend to notice the sadness and be strengthened by it as a force of love, but not to be defined by it.

The universe is already helping with my plans, in it’s funny, funny ways.

Friday, September 18, 2015 was the Marcus Family’s favorite night of the year: The Balloon Glow. We missed it once in the last 15-ish years and that was last year.

I declared the day of the Balloon Glow “Marcus Family Day” from here forward. We leave school early, we eat our favorite junk, we hang out with our favorite people.

Look at those beauties.

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They came from Colleen’s Cookies thanks to Missy.  The kids are cute too.

Look at this one.  Heaven is coming down to greet us through that sky.  Amy got such a kick out of this event.

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I guess I should mention that the Balloons did not actually Glow this year.  It was too windy.   But all of the important things were there – food, cool air, friends, family, hot firey gas sans balloons and fireworks.  That universe is a tricky one.

On to Saturday, check this out.  First, the sky: blue as blue can be.  And that’s Max in the blue jersey and yellow shoes kicking the ball.

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That kid in the red jersey behind Max was strong and fierce on the field.  He has ONE ARM.  Sweet heaven on earth, he was out-playing everyone on that field.

And then, when talking about heaven, there’s always baseball.

I was running Sunday afternoon, and went past a sweet neighbor gardening and listening to the Cardinals game on the radio.  (It was you MJ!)  It was such a scene of regular, beautiful, life.

There is something about baseball on the radio that makes my heart overflow.  I heard Mike Shannon say “a swing and a miss” and my heart filled with love for St. Louis.  Baseball is part of the heart of this city and its history and I love that.

I also LOVE that Grace wore her Royals shirt to the Cards game last night.

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And I love how much Max, the booger, loves watching every play of the game.

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I am grateful for this family, this life, this city, these people we call friends and the head and heart space to feel peace.


I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes. ~Jean Vanier, founder of L’Arche

Two weeks ago, I came up wit ha new title for my, yet to be written, family memoir.  The title of that week was Holy Hell.

I come up with a new title almost every week as a way to entertain myself.

Also, naming it helps me make sense of whatever our life looks like that week and how it got that way. This is helpful because our life looks about as similar from one day to the next as a town before and after a giant tornado.  A couple people have died, our house is a complete wreck, and my hair is more than a little messed UP.

So, Holy Hell.

Holy, because caring for sick, dying and special needs people is holy and sacred work.

Hell, because caring for sick, dying and special needs people is hell. Or at least it feels like hell in my limited, self-centered, wimpy little brain.

We are grateful for the sacred, holy, ground: for being with our parents as they lived out their days and during their deaths; for having Amy in our life and witnessing a pure spirit; for the laughs we have every single day; for the perspective of how much we have been given and not earned; for the chance to dig deep, to feel grit, to embody our essential values.

At the same time some parts of it are a giant pain in the neck and sad and maddening and, at least to my limited, self-centered and wimpy little brain, nearly impossible.

I made my own emoji a while back when my mom was still alive.  I’m sure I’ve texted it to each and every one of you at some point this year.


Because at times a pin in the eye would feel better than this stuff.

If you see me coming, don’t listen to a word I say because living in my little Holy Hell has done to my brain what we did to those frogs in Biology 101 at KSU — stirred their brains with a needle right before we dissected them.   Remember how their legs kept kicking and stuff even after you stirred their brains?  That’s me right now.  Ick.

It is getting better though.  I thought it was stressful circumstances that were contributing to the feeling that I might suffocate and die.  I think now it may have just been heat and humidity.

We’ve had three days of relief from the hell of late summer weather in St. Louis and the fall air has breathed new life into us: this weekend I felt so good, so peaceful that I couldn’t even remember what stressed me in the first place.  (Keep in mind my brain has been stirred and my memory was a tad bit affected by that incident.)

Actually, the real reason we’re feeling like fresh air has blown through the house is that we have connected with an organization called L’Arche.  They are providing some care for Amy in our home on a daily basis.  Their organization is founded on the philosophy that living in community with special needs people is beneficial to everyone.  I can not say enough about this organization and the people who choose to live and work there.

The people of L’Arche around the world do not shine light on the hell side of being in the company of people with special needs, in any way.  Quite the opposite, actually.  This organization is full of holy people doing holy work.

In thinking and talking and praying about the side of this that feels hellish, I’ve realized that the Hell part of my story is all me.  It comes from lingering on what has been lost, given up, or changed. It comes from focus on things that are tightly or loosely bound to the material of this present life.  It comes from insecurity.  It comes from delusions – delusions of perfectionism, control, and the notion that aging will give us peace and wisdom but not saggy skin and a jelly belly.

Once again, when life is all stripped down, just as it is in sickness, death, and special needs people, it is all holy.  Our life is full of abundance, luck, good fortune and health.




I’m afraid it’s always going to feel like a bit of heaven and hell though, as long as my little brain, my whiny mouth and limited heart are involved.

I am grateful for experiences that help shine a light on the holy and for times when the hellish stuff seems tiny, or better yet, funny.



Tomorrow may rain with sorrow
Here’s a little time we can borrow
Forget all our troubles in these moments so few ~Heavenly Day/Patti Griffin

It’s back to school time again.  The past two weeks have been calm, healthy, getting organized, gems of normalness.


And when I say normal, it means something different to everyone, agreed?


For sure.


So in this moment of peace, I’m watching and waiting to see what the universe comes up with next.  Back to school has started this way the past couple of years and then taken a nasty turn in September.

Sep 18, 2013 doctors said our mom had a few days/weeks to live.   That whole school year was spent in the mode of when…if…how…why…what?  And included 86,732 miles between St. Louis and Kansas City, a few new wrinkles and pounds and a lot of love and gratefulness.

Back to school 2014 started out in a new normal, aka completely unsettled and thrashing about.  Sep 18, 2014, our dad died.   I’m not making it up that the dates were the same.  That whole school year was spent in the mode of moving mom and Amy to St. Louis, taking them back and forth to the cancer center, social service agencies, trying to make the most out of borrowed time and when…if…how…why…what?  and more wrinkles, more pounds, more love and gratefulness and heartbreak.  Our mom died on May 4th, right before school ended.

What is it with my parents’ and the school year?

So here we are, school is on again and we’re yet again in a new normal.

I dreamt last night that my mom was dying.  In my dream, my heart was shattering and I was telling Dan that I couldn’t live without her; he was saying something about me being dramatic.  Of course I also couldn’t find her to sit and hold her hand as she passed, my dad was there, my siblings were going every which way.

I woke up and it took a while to breathe in reality.  They are gone.  They aren’t dying any more.  The when…if…how…why…what has slipped back into the recesses as it is when life and death aren’t staring you down and ripping you up daily.  Hours later still, I don’t know if that was a nightmare or a beautiful dream.

Those in my dream may have been my first actual feelings in a long time.  Life is settling down and the feelings are loosening up.

I’m going to sleep until 1 Oct.  When I wake up I will accept whatever surrounds me.

I hope it is something like what Dan and I saw when we finished our evening walk the other night.  That’s a rainbow.  But more to the point, our house seems to be sitting on what should be a GIANT POT OF GOLD.

Thank goodness.


You can dance in a hurricane, only if you’re standing in the eye. ~Brandi Carlile

I’m grateful for moments of dancing in this hurricane that our life has become.   

I’m grateful for a second time in one month for that hot, sticky, run down six flags and its ability to make us smile.

  I’m grateful that the hurricane includes life evoling into MIDDLE SCHOOL as it should. Ack. 

And that there are always milkshakes.
And the fact that even in a hurricane and a lot of change, beautiful friendships are still part of the swirl. And many times those friendships step in right exactly when we need them to hold our hands when we step out of the eye and into the chaos of the hurricane. 

 And officially take their position as one of the family.


I am happier when I love than when I am loved. I adore my husband, my son, my grandchildren, my mother, my dog, and frankly, I don’t know if they even like me. But who cares? Loving them is my joy. ~Isabel Allende

I need to take a moment and express gratitude for my husband.

He finds the good in almost every moment.  Especially the half good, kind of rotten, a little bit frustrating, ones.


He is wise and patient and smart as-a-dickens.


He jumps in and has fun easily in unending scenarios.


He’s willing to do almost anything especially if it is slightly risky and involves being outside.


Like sailing with no expertise…


He’s confident, no matter what.


And to him, it all goes well.


And he’s right.


I have learned so much from him.  Like when you need to rest, just do it.


He works really hard and he makes good things happen.


He does a lot to make life fun for us.  Like this drive in movie in our driveway on a 100 degree weeknight.  My idea.  100% Dan’s execution.  150%.

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He loves deeply.

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I don’t have a recent picture of him with Amy, but the way he has embraced her, welcomed her, cared for her and engulfed her with love is simply astounding.

He puts up with a ton of nonsense.

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He has a pretty simple perspective that cuts through many complexities of life with an open mind and comes back to a few basic core principles.  He’s pretty unfaltering and unflappable.

I am so grateful for him.

While grief is fresh every attempt to divert only irritates.  You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

Day 4 started with a trip to get Donuts for the Underwarriors.  Underwearers?  Undie brigade?  I forget what they called themselves.  Half nakeds?


Luckily I did manage to get them in clothes by the time we left for SIX FLAGS!


Grace accomplished one of her summer “goals” and rode Mr Freeze.


I reveled in having a 5 year old along.


The kids were very adventurous. Addie wasn’t posing, she was excited/terrified.


The boys were equally terrif—happy to be going along too.


I’m not sure I’ve mentioned to anyone how often, recently, I find myself thinking “what could go wrong?”


Yep.  Two wheelchairs, ONE mom, five kids.  Nolan got quite queasy after that loop-de-loop ride.  We tried an ice cream stop to get something cold and rest sitting down for a bit but he felt too yucky for ice cream, so we called in first aid.


Please note that I did NOT get to finish that whole entire ten scoop, fresh made waffle, ice cream cone before we got to the first aid house.  I sure tried but it would not have been appropriate to keep slurping up that ice cream in the nurses station.  Would it have?  I debated the whole walk there.  I looked like one of the kids when we got there – ice cream all over my face and hands.  It is SO HARD to push a wheelchair and eat a giant waffle cone in 108 degree heat.   I sure did give a point back to the universe for this one.

Nolan was feeling pretty pitiful for a few minutes but rebounded very quickly.  Don’t let that face fool you – he and Max were super mad there because their side of the boat didn’t get soaked.


Overall, it was a great day.


We bonded like only an amusement park can help you do- being filthy and sweaty and pretty sick to your stomach and going back for more together.


The best part of the whole day, for me, was riding the taxi ride with Walker.  I kept telling him to drive straight, which he couldn’t do as those cars are on that little track.  It cracked him up over and over and over and over.  We rode it 5 times.


This day may have been the best day of this whole year.   It was a purely good day.  I felt my love for my kids and their cousins so deeply and with attention that has been hard to give over the last year.  I was in heaven spending so much time in one big chunk with all of them.

We stayed until they closed down the park.  In memory of my mother.


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