Sunday, December 29, 2013

two months

Hummel figurine talking hello.
missing.
missing.
missing.


Tuesday, December 17, 2013

Birthday gift.

I can't get a picture of what is happening right now, but I know I have found home.

We set up our brand new living room this evening, in our amazing new home that is about as perfect for our little family as we could ever hope for. Poor Hazel isn't feeling well tonight, so we created a cozy nook to curl up in all together. Eventually everyone (except me) dropped off to sleep, and the night is still and calm. I am lounging on our couch, Calliope sleeping in my arms. Cadence is dozing beside me, Lily and Carmen both spilling off of her tiny lap. Puy is curled in the fuzzy grey recliner that our new landlords gave us-it's just her color, and her delight in camouflage dictates that it is now hers. She is contentedly watching the fire while I soak in this scene; James and Hazel using my feet as pillows and the Christmas tree, which our landlords reported showed up with a bunch of elves, rounding out this little circle of coziness.

This is worth it. The relief, as one friend put it, is palpable. James' commute was halved. The kids and I were able to go out and about without the car, and the old routine of walking to our destinations made everyone giddy. They exchanged thoughts on how this was different-you can see more, so much happens when you walk, you can hear things when you walk that you'd never catch in a car. You get exercise and can breathe fresh air that doesn't smell like vents. In bad weather it can be unpleasant but even then you are at least experiencing something. 

They are amazingly smart kids. And they thrive in whole body experiences. Not being strapped into car seats for every little thing. Not being strapped to a desk for every little lesson.

This is a home. A place of comfort where we can all thrive. Not a polished cage where humanity is frowned upon. Here we can heal. We can grow. We can feel safe. 

And with that, the clock strikes midnight and it is my birthday. Here's to 29. Bet it'll be a helluva year.

Pat, Scott-You gave us the key to get out of the cage well before we would otherwise have been able to. We are so lucky to have you in our lives. I love you, and hope you'll be able to visit this place next time you can come out east. 



Tuesday, December 3, 2013

Kelly Update

I want to offer a huge, heartfelt thank you to everyone who has reached out to me and my family over the past couple of days.  The scope of suggestions and offers and the way everyone rallied to try to make sure Kelly was safe and cared for was wonderfully stunning.

The important thing:  Kelly is coming home.  Her specific journey and choices are hers to share or not as she pleases, so I won't go into detail here, but we owe it to all of you who stepped up to let you know that she will be home with Dad very soon.

Thank you all SOOO much for your support and assistance. 

Much love!!!

Monday, December 2, 2013

What We Need

I am not ok.

I am writing this here because I have been trying to write for days now about how we are doing and what we need and it just hasn't been working because I have been trying to hard to be safe and polite.

Tonight I have lost the ability, or the will, to care about being polite.  We are not ok.  Not at all.

I feel trapped.  So, so damn trapped in this isolated place, this no man's land where the only memories are of my mother's death.  We have a sympathetic neighbor or two that we see now and again, and we have a couple friends in the general vicinity, and I don't mean to discount their presence…but I only see them maybe once a month or so?  It isn't enough.

My glorious godmother fedexed us an entire cooler full of frozen, home cooked meals all the way from Portland OR, and one of our NY friends had a delivery set up from a local restaurant one night.  Many people have sent us boxes of pears and chocolate. Other people have sent money so we can get food, and a cousin shopped for us-these are all wonderful, wonderful gestures, but it somehow lacks the comfort of the midwestern church ladies drowning the mourning family in casseroles that last weeks on end…that is somehow what I am used to, and it isn't here. I can't even remember who to thank when I never see faces, and I stress over where we can safely order from, and is that gifted food allergy safe?  And where are all the faces…I don't even have my sister or my dad here…the people who knew my mother existed and was wonderful and loved and loving…here I see strangers, who know nothing of her, who have no idea that she lived and died within these walls just weeks ago.

And it isn't just that.  It's the difficulty of daily life here, the fact that James spends 3 whole hours commuting EVERY DAY, which means he is out of the house for 12 hours every day and I am on my own with the kids, and I do my best but I am only one person and I am struggling with this loss and so are they and they need more than just me, and I feel so alone…and I worry about him, biking five miles to catch the train, and then five miles home after dark, riding in bad weather, cold temperatures, on the road…It isn't safe and I worry, I worry, I worry…

The chaos I feel in my spirit seems to be reflected in the situation here…this building, the first place we have ever lived where my children scream that they hate it here and want to move, the chronic fire alarms, the lack of insulation and shaky floors that lead to angry neighbors…the fact that four days after we moved in they bulldozed ALL the trees we could see from our home, and now BOTH sides of our corner unit look out over noisy, dusty, ugly construction sites.  The bulldozer under my kitchen window competing with the dump truck clanging outside the bedroom gets to be just too much, and we keep the windows closed to drown the noise, but then my allergies go haywire from the carpeting and no amount of vacuuming and air purifying seem to make a dent in it…

But worst of all is the smell.

Cancer fucking stinks.  If you haven't had a personal encounter with it you may not be aware, but cancer has a distinctive, horrible odor, that gets worse as the disease progresses.  It is a sickening stench, and strong…her whole room still smells of it, and I can't get rid of it.  No amount of cleaning, airing it out, scenting the air, anything…I can't get rid of this horrible smell of my mother dying.  And lately I can smell it in the rest of the house, too.

I cannot imagine spending Christmas here, with my children's joy stewing in that smell.

I need and want out, so, so badly.  What I need is for someone to find us a suitable home, and help us get out of here…someplace where James can actually be a realistic presence in our lives, where there is no dynamite outside the window or neighbors complaining about my vacuuming habits, where we don't have to get packages during business hours and the fire alarm doesn't go off 8 times in two months. Maybe have some outdoor space - a yard.  A fireplace, maybe, so the smell of the woodsmoke could cleanse my heart of that horrid, horrid scent that haunts every breath I take - every breath my babies take - tainting our lives with death.

Here, I can't cry.  I don't have time to mourn. This is the first I've written in days, and it is 4 am and I have not slept.  Instead, by body is physicalizing the stress.  My eczema has hit harder than it ever has before, my whole body is afflicted…my arms, neck, and chest  are more or less open wounds at this point, my skin sloughs off so easily…my eyelids have taken turns swelling painfully, and once that subsided I developed an eye twitch that kept me up the other night because my eye kept opening on its own when I tried to sleep.

I have also, horrifyingly, awoken an old, sleeping foe; the nerve disease I battled as a teenager and had finally put into remission has reared it's ugly head once again.  It isn't surprising, seeing as this thing is infamous for responding to emotional stimuli and this has been a whopper of a year…known as RSD (reflex sympathetic dystrophy) when I was first diagnosed, it is now more popularly called CRPS (chronic regional pain syndrome) and as that name might suggest, this bugger freakin' hurts.  Today I even had to break out my old TENS unit to cope with the pain, something  which I never thought I would do again, and weirdly offset the energy in my entire body.

My foot has been turning all shades of blue and purple, swelling, generally being an oversensitive nuisance complete with aching, burning, shooting, intense muscle locking pain, all familiar afflictions that I have no fond nostalgia for.

So there I am - trying to mourn my mother, alone, in intense pain, skin flaking off, eye twitching, with three young kids under my charge, in this uncomfortable place (described best by my friend Liz: "It's agoraphobia coupled with claustrophobia!") that is surrounded by noise pollution and the stench of death to boot.

But here's the kicker, and the real reason I am writing this negativity-ridden post:  I have it better than Kelly right now.

Read that all again, and let that sink in for you: I have it better.

I had my mother for 28 years.  Not long enough, but long enough that I was able to find my way to some semblance of adulthood with her around, and had her as a guide through the early years of my marriage and the birth of all three of my babies.  Now, I have my husband and my children to care for and focus on, to give me strength and support and inspiration in everything I do…

Kelly, though, only celebrated her 20th birthday weeks before we lost mom.  Her established life is that of a dorm, which she lost when mom's health turned because she had to withdraw from school in order to be with her.  She is just on that edge of adulthood that is so treacherous and scary for everyone who passes through it, regardless of specific life circumstance.  She wasn't done being mom's baby, and loosing her has hit Kelly the way the loss would hit a child, despite her maturity.  We are both extremely lucky in that we still have our father, who is very devoted and loving, but he will, of course, never replace our mother.

As if losing your mother before you've fully grasped adulthood wasn't enough, poor Kelly caught a kick while she was down when, the day before mom died, she discovered that her long time boyfriend wasn't just returning to his overseas studies when he left her side, but that he was, in fact, returning to another woman.

Catch that?

Yeah.  it hurt every bit as much as you can imagine it did. And probably then some.

Listen, he gets credit where credit is due-he came when we got him a ticket to be with her, he was helpful to us as a whole while he was here, helping to feed and entertain the kids…I don't mean to make him seem like a horrible demon, because he has many wonderful qualities that made her fall in love with him…my point here is to explain her pain, not slander him, but:

When she confronted him, and they were trying to work it out, he had the audacity to tell her that he couldn't stop seeing the other woman because she "was sad" - her boyfriend left her and she needed comfort.  As Kelly dealt with the fact that she just watched her mother die.

She is suffering so much.  So much loss.  So much halted potential.  And she can't go back to school until next semester. And only a few of her friends (albeit awesome ones) still live near her home base with dad.  And that house itself is fraught with memories, since mom lived there for 12 years, and she wants nothing to do with this place, either, which means building a new,  safe space here with me isn't a viable option.  She feels so lost right now.

Anyway, my point is she loves this boy so much, losing him right now is a huge blow…just when she needs support the most, the support she did have totally imploded.  It's so so hard and so so scary to admit that two of the most important relationships in your life are just suddenly gone without warning…mom took away much of her past, and she felt like this boy was taking the future she had relied on to get her through that pain.

She didn't like the way things were playing out, breaking up via Skype and Facebook, and she honestly believed that the best thing for her was to utilize the tickets she already had to fly to Iceland and see/deal with him face to face.  So she went.  She knew that we would worry, and as such has been making a concerted effort to check in with us/respond to our messages just to let us know that she is ok.

But she is not. Not at all.  The main thing keeping her going through all of this has been her friends, but her phone doesn't work overseas, and she doesn't have the proper power adapter for her computer and thus doesn't even have good internet access. She has been using his computer consistently, but it doesn't allow her to rely on her extended network of friends at all.

I was going to say that what she needs is a travel companion.  I was going to ask all of my well traveled friends if anyone would happen to be passing through Reykjavik, or would be headed to Europe and might be willing to have a companion for your travels, because what Kelly needed was a friend, someone to travel with, have new, fulfilling experiences with, to get out but not be alone.

But then I got a call from Dad.  Evidently Kelly is in a really bad way-a bad enough state that her now ex boyfriend is scared and called his mom because he didn't know what to do, he is afraid to leave her alone.  His mom contacted dad, and now Dad is trying to figure out how to get to her, to bring her home safely.

So now she is in Iceland, a cold, wet, dark place where they only have 4 hrs of sunlight a day, almost completely cut off from most of her friends, trapped with her now ex boyfriend and the woman he left her for, and is in way over her head.

We have both been trying to get in touch with her by any means possible, calls, texts, email, Facebook…we haven't had meaningful responses from her since friday, and now this distress call…I got really worked up last night after trying to reach out to a bunch of her friends - wonderful friends, she is lucky to have so many people around her - but young, an inexperienced.  They honestly believe they are watching out for her when they tell us we need to just give her space and not try to reach her or intervene, that her ex is just being dramatic and overreacting and this is his problem not hers, but frankly, I've seen too many people that I care about go through this, I've seen people lose this battle, and I am not willing to take chances.  I know now from experience how distorted reality can get from the inside, and how easy it is to think you have your own best interest in mind, when you don't.  Often, what you want is totally different from what you need, and things can turn south quickly. In those moments, no phone or computer can reach out and stay your hand.

Again, as Liz said: "No one regrets intervening. Everyone regrets not doing so if the end is tragic."

I didn't post this last night because it was written in an emotionally elevated state and I know this is going to be a huge thing to put out there in the world, and part of me knows it is a dangerous thing to do - And if absolutely nothing else, Kelly would be mad at me for doing it... But I know that the more people are aware of the problem, the better the chances we have of her getting the help and support she needs, both now and down the road.  And truthfully, I was also hoping beyond hope that her friends were right and that this morning I would wake up to a pissed off message from Kelly, being annoyed at our fretting and telling us to chill out, she's fine.  But there are no such messages today.  When she has been so consistently checking in to let us know she is well, this radio silence screams "I am not ok, please help me" just as loud as anything can right now.

And I will have no regrets.

Kelly, we love you beyond words.


Sunday, December 1, 2013

Belated birthday gift

This little snake charmer found a new friend at the store today. She found that snake when we first walked in, wrapped it around her neck and strolled off...we tried to put it back many times, but she wouldn't hear of it.


We were there to get a much needed chair, not toys, so we insisted that the snake needed to stay in the bin with its friends-much to her dismay.


Of course then I started thinking about how the last time I came to that store, it was with mom. And how, if she had been there now, she would have gotten the dern thing for her, and then given me a little "whaddya gonna do, I'm the grandma, I get to spoil them" shrug before moving on. And how she was looking forward to celebrating Calliope's first birthday, which she fully expected to be there for.

So, of course, guess who now has a new serpentine companion, as a belated birthday gift from Nana, who totally would have wanted her to have it.


I totally think she intervened and made me do it. :-p

Friday, November 29, 2013

Thanksgivukkah


Happy Thanksgivukkah, everyone.

We usually spend thanksgiving with James' side of the family - a tradition started back when our relationship was barely a few months old, and something I have always treasured.  This year, however, the time James took off to help me through mom's passing and the subsequent travel for her services meant that he didn't have any leave to take today off.  This meant that we weren't able to make the trip up to connecticut as we had planned, and so we had our very first experience of having Thanksgiving on our own.  Which, of course, also meant prepping the entire feast on our own for the first time!  It was quite an undertaking, and the whole day was fraught with triggers-I could feel mom's presence, and the lack of it, in just about everything I did.  I was glad to have so much to cook, though, it kept me busy and kept my mind off of things.

Another very helpful element was James' friend and co-worker, Ben, who joined us for dinner last evening.  Ben brought Chanukah gifts for the girls, and showed them how to light a Chanukiah and shared some of his family traditions with us...In the end, I think a little celebration of light was just the thing to right our hearty but unsteady little holiday.

Thank you, Ben!


Thursday, November 21, 2013

Happy Birthday

Today should have been my mother's 58th birthday.

Only 58. But she won't ever be 58. Or 64. Or 80...I won't get to see what she looks like as an old lady, or ...or anything.  I tried to complete that sentence but there were too many possiblitiies, and it just came down to that: anything. 

Love you mom. I found this in the living room today:


These girls, they love you so much, too. We baked you some cupcakes-they are sorry things and I over baked the first batch. I'm sorry you weren't here to laugh about it with me. I hope next year I will be able to connect with you more deeply, but today I just felt the lack of your physical presence a bit too sharply.

Happy birthday.


Tuesday, November 19, 2013

The Lanyard.

If the whole service had been just this, it would have been more than enough.

Thank you, Kelly.  


Mom's Memorial reading: The Lanyard by Billy Collins from Kelly Zenn on Vimeo.

Sunday, November 17, 2013

Remembering Nana

I know that I must have someone within my network who can put me in touch with the Coen brothers…Can ya hook a girl up?  I need to have a chat with them about how they have managed to gain control of my life. It seems as though they have been orchestrating painfully hilarious layers over every element of it lately.

Example: I write this update from our shelter while we wait for the tornado warning to end. There have been devastating tornadoes all over this region today, and while it seems that this particular twister is far enough north to miss us entirely, the sirens went off and we figure better safe than sorry. The kids are grandly freaked by the whole thing, and trying to keep our now-toddler from sticking her hands in weird stuff (like the ever fascinating exhaust pipe on my dad's motorcycle) down here is a bit stressful...

But, at least we have all (mostly...hopefully) recovered from the food poisoning that hit all five of us the night before mom's service. Two hours before it was set to start, I was genuinely worried that none of us would be able to make it at all. We spent a miserable night up every few minutes with someone in the bathroom...thankfully we were able to make it through the service, but my stomach was doing flip flops for soooooo many reasons.

I don't feel mentally capable of writing about the service, about my emotional journey, about…everything that I feel needs to be said, expressed…Gratitude, in droves, for everyone who has come out to help; devastation at the lack of her presence in my life; anger, creeping in dark corners, at the fact that this is all happening; fear, trying to take over, about how to carry on from here, frustration, reflection…pain…

I did want to share this one thing, though:  In the hour before mom's service began, when it looked like Cadence and Hazel were too sick to attend, I asked them if they wanted to say something that I could write down and share at the service for them.  I let them both talk together and wrote down what they said with the intention of creating a brief statement from each of them, but they feed off of each other so well, and they took the prompts I gave them (what do you want to share with everyone about her? what did you like to do with her? How did Nana make you feel?) and ran…the resulting dialogue was so perfect, I couldn't have written something better had I scripted it with a dramaturg and an editor.

Thank you, Cadie and Hazelnut, for this beautiful tribute.

Cadence: I liked playing guess who with her
Hazel: I liked playing Maisy with her. And playing dress up with her.
Cadence: And I liked playing the allowance game with her and Kelly.
Hazel: Going to the park!
Cadence: Going to the water park!  I liked when I read a whole chapter book to her, and I liked reading stories to her.
Hazel: I liked reading the Oops! book with her.
Cadence:  She would sometimes correct me when I read a wrong word…like when she reminded me that it was 'stargaze'.  Nana made me feel good.
Hazel: She made me feel special.  When I was cold she would warm me up.
Cadence: Oh yeah! She would warm me up when I was cold, too! She made me feel safe when the fire alarm went off.
Hazel: When the fire alarm went off, she took me and jiejie out of the building that's what made me feel safe.
Cadence: We played together, and I liked playing with her.
Hazel: I don't know what else, I just love her.
Cadence: I love her, too.



Endlessly thankful to Zoe Adlersberg for this amazingly wonderful photo.




Thursday, November 7, 2013

Holding on

The last smoothie that I made for her - the one with coconut milk and mango and vanilla and honey - languishes at the back of the fridge. I can't bear to think of anyone else consuming it, yet I can't bring myself to throw it away. Not yet. Not yet. It's still to near, too fresh.

The last bar of chocolate she tasted sits neglected on the bedside table, the chunk we broke off to give her conspicuously absent as it seems to wait to fulfill its purpose. "No one is going to want to eat that bar," we said, and yet it sits.

We go through drawers and bins and boxes, we reminisce over jewelry and trade stories over half forgotten tokens. We wonder over artifacts of our mothers life, details and nuance now secreted away forever. And we can do this with a healing flair, a sense of love, admiration, honor, continuation...

But the dates she bought before she left, the yogurt only she would eat...these things I cannot touch. I know that they will spoil and they will die, but for now they represent the closeness of her life, the nearness of her very being, and I cant fathom the emptiness that will be left behind once the ever present presence of her has disappeared.

My Mother's Hand


The hand I held
to help me learn,
to grasp for comfort
to find life's pulse

The hand I held
to steady my walk
to communicate
to test and try

The hand I held 
to scale the heights
to share tokens
to mold my skills

The hand I held
to guide my way
to make amends
to build confidence

The hand I held
to leap away
to steady passion
to support my dreams 

The hand I held 
to reconnect
to retain
to rejoice

The hand I held
to welcome a love
to greet a child
to embrace a family

The hand I held
to share
to encourage
to care

The hand I held 
to comfort her
to brace her
to reassure

The hand I held
to steady hearts
to love
to send her off to peace.

Friday, November 1, 2013

Pears and Chocolate

I need to say thank you.  I need to stay grateful.  I need to remind myself of all the amazing support we have been getting over the past week.

Because this is hard.

It is so hard.  To be here, in this weird place, still new, where we don't know anyone well enough to fall back on, where we don't have favorite spots or trusted comfort zones...it is hard.  To exist in a little bubble of grief, when you know that no one nearby is mourning with you, it's isolating and lonely, and it is hard.

It is hard to find ways to feed my hungry family when my own interest in food has all but disappeared, my ability to think through a recipe hampered by the inattention my brain has employed to combat sadness, the very structure of our building making delivery confusing enough to become a deterrent, and anyway, allergies make ordering out a dangerous and stressful event best kept to a minimum.

It is hard to mourn alone.  James is here and present for maybe an hour a day, thanks to his 3 hours spent commuting on top of his full time job. He needs to get his rest in order to stay safe, riding his bike before dawn and after dark to get there and back, so I can't even ask him to stay up late with me.  Kelly has had friends with her throughout much of this ordeal, and will be leaving soon - which is good, she hates this place and I don't want her to suffer any more than she is already suffering, so she needs to go.  And the kids of course are always around, but they are kids and do not need the burden of holding such a grown-up loss on top of the loss they are already feeling.  If this was happening to a friend of theirs, I would be supporting them as they supported their friend...but who would be supporting them through helping me? 

I need to keep my children safe, and fed, and comforted, and inspired.  It is so hard to be kind to myself when skipping the dishes for a single night can derail an entire day and leave the house in such a state that I can't think except to worry that if anyone saw it, they'd take my kids away.  How can I be kind to myself when just getting through the day requires the kind of steel they build armor from, that leaves me capable of basic function but incapable of human emotion? 

This place does not lend itself to breathing.  It's so odd being here, in this new, not traditionally comfortable place.  We moved here for the ease of the day to day, for the quiet, the space...but they bulldozed the trees four days after we moved in, and now every window we have looks out on construction sites, and the building can't afford to provide the convenience they charge for, and we share every sound with the neighbors we don't know on the other side of the too-thin boarders between our space and theirs.

I can't mourn here.

But I can't get caught in the shadows.  I need to remember to focus on the positive the way I have done for mom for so long now.  To remember that our nearby cousin has offered to go shopping.  To remember that Liz came to me the day mom passed even though she probably didn't have the time.  To remember that we've gotten three boxes of pears, and two boxes of chocolates. To remember that even if no one is physically here, there are words of support flowing through this computer screen constantly.

So yes, this is hard...but in pears, and chocolate and love, we are rich.

Pumpkin slop lonliness

True to the emotions portrayed here; I never finished this post.

**********

There is no one here.

I don't know how to do this alone, and there is no one here.  James spends three hours a day commuting on top of a full workday, and he comes home and has maybe an hour to spend with the kids and I and then he has to go to sleep or he can't get up in time to function to be safe riding his bike before dawn and after dusk to get there and home again.

Which means its just me.

...and now I can't stomach the thought of using the third room.  How do I take back that space that we built for my mother who is gone, and never coming back.

How do I grieve for her when being kind to myself means not doing the dishes after every damn meal and still pick up every toy the kids drag out, but after two days the mess is so horrid I can't think and I'm sure that if anyone came in they would have me committed and take away my children...

There is no one here who is mourning.  Outside of these apartment walls, no one notices a difference.  It is so weird to go through your day to day in a place where no one you encounter will be sharing your grief.  I have seen one friend, once, since my mother died, almost a week ago,

In Memorium: Mary Ann Johnson


My mother, Mary Ann Johnson, as a child
My mother really wanted her obituary to be funny. I don't know if I will be able to be as irreverent as she would have liked, but I will do my best to keep it light.

She came from long lived stock, her grandfather was born in 1822, and did not sire her father until 1895 - and he had younger siblings, as well. So, upon her arrival in 1955, she represented just the third generation in 150 years, and I guess somewhere there are odds that suggest that somewhere along the line, someone would end up dying young...it would be just like her to take that fall for herself in order to improve the chances for long, healthy lives for her children and grandchildren.

She leaves behind two devastated but very proud daughters, Kate and Kelly, and three granddaughters, Cadence, Hazel, and Calliope. She also finally beat her older siblings, Peggy and Bill, in a race...though it wasn't one they knew they were running.

She married Scott Stroot in the early 80's, and their journey left her with amazing friends all across the country and throughout the world. Her work as a nurse allowed her to do what brought her the most joy in this life-caring for others.  She delighted in working through her first occurrence of cancer, saying that her own physical torment just made it easier to connect with her patients.

She spent the last year of her life unable to work, but finally able to live for herself.  In her final year, she traveled to Hawaii, swam with wild dolphins, took up yoga, jumped into a great lake, traveled to new places and made amazing new friends. She saw shows and flew in a hot air balloon, she laughed and cried and became a published author.  

She was one of the strongest, most genuinely kind people that have ever walked among us. To paraphrase Don McLean; this world was never meant for one as beautiful as her.

We love you eternally, mom.



My mother in the sun on her final vacation, about a month before her passing.  Thank you to Sandy for this glorious image.

Monday, October 28, 2013

A Post I Don't Know How To Write

First Jack-O-Lantern of the season.  A family effort, carved with love.



When I held her hand and tried to feel her energy two days ago, it buzzed in my bones.

Last night, stillness.

My mother is gone.

I was holding her hand, and singing Iris Dement's Let The Mystery Be when she stopped breathing. When I finished that, not ready to let go of that moment, I sang Butch Hancock's If You Were A Bluebird one more time.  When I got to the line "you'd be flying home," she took one last breath.

And then she was gone.

She slipped away peacefully, just as she had wanted.  The struggling sounds she had been making with each breath earlier in the day had quieted when I began to sing.  I'd gone through many songs before I noticed her breaths slowing. As understanding settled in, my phone buzzed in my lap... my dad sent a picture of Mom's beloved critters, Pepper and Jewels. Kelly responded to his text uncharacteristically quickly...all of their presences were had come together in that moment, and I knew this was her moment.  And she took it.


My friend Liz called just then, too -though I didn't answer for obvious reasons... Liz and I have now unwittingly contacted each other during two births and a death-and not nearly enough in between.

There was a relief in her passing, to be honest.  Relief in the form of devastation.  She had been totally lucid the day before, moreso than she had in a long while, and during that time she made it clear that she was ready.  Then she went to sleep, and if she woke, it wasn't to this plane.  I was scared because she didn't rouse to swallow the pills that would hold her pain at bay.  I was scared because there was a clerical error that meant we had no liquid morphine to ease her suffering.  I was scared because the nurse we called to rectify the situation was harsh and insinuated that she was in pain and would be for days on end. I was scared because I didn't know if mom was trapped, or merely loosening her grip on her physical being.  So while Kelly had dashed to get the medicine to provide her with comfort, I sat with her, and held her, and sang.  I was relieved to see her muscles relax.  I was relieved to see her begin to calm, and I was devastated, and relieved, to see her letting go, escaping the cage her body had become.

The last thing she did before she closed her eyes was to laugh with her oldest friend, her daughters, and to hug each of her grandchildren.

I found this on the living room floor after she had left us.

I cannot begin to describe the deep, primal despair that has taken up residence in my heart.  My brain won't let me touch it yet.  I know it is there, I can feel it, and I know its gonna hit me like a tidal wave and paralyze me...but for now I'm sitting in a clearing, listening to the stillness, trying to breath through the surreality I've landed in before the storm of grief fully hits.






Wednesday, October 23, 2013

Transitions and Trains.

Mom told me yesterday that she was visiting the atmosphere.  She is having fun, she says, because she is transitioning slowly, testing the waters - as she always does before she jumps in. She's exploring the atmosphere, then coming down to hang out with us in the physical realm for a bit, then flitting off again...

There are people in her room.  First she reported that James was standing by her bookshelf, out of the way, but that she "could feel his spirit caring." Alex was with him.  Then she noticed other people filling up the room...As she named all the people around her, sitting on her bed, stroking her hair, standing beside her, it hit me that these were all the people who love her, and have been sending love, good vibes, prayers, support...even people that I wouldn't have expected her to remember, that have reached out to Kelly & I...We decided that, since she was in a special place between our reality and a spiritual realm, she must be able to actually see their spirits being there for her.

"How do you feel about them all being there?" I asked her.

"It's very comforting" she said.

Later, she leaned  back and asked me "do they know how ok I am?  I am ok. Do they know that?  That I'm happy?  Tell them that this is a good way to go. It's pleasant."

She is not all here, but that fact is not all bad.

Granted, some of the conversations we have had over the past couple of days have been like reading a script from an absurdist play, but the ultimate takeaway is that, as long as she is not in pain, she is not troubled by her hallucinations or inability to follow a conversation.  The only time it seems to upset her is when she is afraid her confusion is confusing everyone else.  That right there tells you she's still there, the same old Mary Ann, wanting to take care of everyone around her and not burden anyone.

We have increased her pain meds and I actually got her to drink a smoothie (that the girls made! hooray!) of banana, oats, and greek yogurt, and I think the combination of the fuel and reduced pain made a world of difference.  She has been much more lucid and even came out to sit with us in the living room (briefly) with the help of a hospice-provided wheelchair.

She tired quickly and asked to go back to her room, but I heard her talking after she was settled and went in to join the conversation.  She was talking about how this is a trip, and when you travel, no two days are ever the same, and so she was just traveling, and that is how it is.  I piped up to ask if it was a good journey...I don't know who she had been talking to before that, but she gave me a look that made it clear that it was perhaps rude of me to ask such a thing, but answered that yeah, it was a fun journey. She backtracked to explain that this little compartment-her bed, commode, table, with her window, the beautiful flowers and artwork she has received and the clary sage wafting from the salt-lamp thing Kelly got for her- it was like a train compartment, and she was traveling, journeying from here to there.  A fancy, luxury sleeper train car, we agreed.  She was comfortable, and I thought she had drifted off to sleep, when she said something so suddenly lucid that I had to ask her to repeat it.  So she did:

"Tell them that its ok if they don't see me off.  This way I don't have to suffer through saying goodbye to every single one of them. Put it in the blog."

And so I am.



James snapped this picture for Peggy before she and Jess caught the plane back to MN.  Mom surrounded by "her girls"-My Aunt Peggy and her daughter Jess on the right, Kelly, me & my kids on the left.

Tuesday, October 22, 2013

The Price of Lettuce

I had to make dinner.

I had been in crisis mode and now I had a break from it and now I am faced with dinner.  But dinner was beyond me...the weight of that task hit me so hard I couldn't stand.  I have to make dinner.  How do you make dinner when your mother is dying?  How do we move forward-what does the mundane look like from here?  How will I take care of everyone, how will I clean, how will I go grocery shopping now?

"This is the price of lettuce," I thought to myself as I sat on the kitchen floor-not cooking.

So many amazingly wonderful people have come forward to offer love and support during this entire ordeal, and many of them have been here themselves, and, having survived, reach out to through a tow-line in our direction, to help guide us through it.

And for some reason, almost every one of the people who have tried to warn me about the patterns that grief follows have given me the exact same example of something seemingly mundane that can unexpectedly break you; The price of lettuce.

They are right, of course...It's easy to stare down a hole in your life and say "you are a hole, but you can't jump up and swallow me."  You can even taunt the hole, if you are staring directly at it, and soak in the absence that it is. Then you can feel strong, and capable despite it.

But when you're not looking at it, the hole can follow at your heels, one step behind you everywhere you go.  Then, when that little price tag makes its move, you see the numbers jump out at you, now perhaps higher, perhaps lower, or even just the same something ever present in your routine that you hadn't considered before, and you stager, which makes you step back, and down you go, right into the hole...waiting there, ready to swallow you when you falter, never needing to leap up expending energy of its own.

it is a hole after all.

And mine found me at dinnertime.  I can run around and focus on being in the now, of caring for mom, for my kids, for my husband and sister and friends...but I can feel this hole already.  I am beginning to taste the edges of what it is going to mean to be 'without' even though now she 'is', and my heart slows in anticipation of the hurt.  I know that at this point there is nothing I can do but love and delight and BE,  but I think I am starting to see the edges of my grief in a new and honest light.

A hole, in the truest sense.

Mine sits on the island in the kitchen.

Waiting.

Photo by my godmother Pat, thinking of my utterly irreplaceable mother while in Amsterdam.

Wednesday, October 16, 2013

A sleepless night

I write this from the oddly dark, deserted (save for my sister and myself, with our smuggled food and rearranged couches...) neurosurgical waiting room...

The TV is preset and locked on the TLC channel, adding to the strangeness of this.  It feels, with the brightly colored chairs and couches, and the late night hour with my sister, equal parts college study session/sleepover, and ...something really intense.

I miss my babies (poor James is having his first solo night with all three...and Calli still nurses during the night, so I do not anticipate this being an easy evening.  And poor Carol, in from Boston, is supposed to be resting so we can switch out in the morning, but will be subjected to the Wrath of Calli all night as her world is JUST NOT RIGHT.  If you know Calliope, you know that she MAKES IT KNOWN when she is not happy...and methinks this turn of events will make her not so happy...)

I am not worried about mom.

I mean, I am, but...these past few days have been so wonderful. I mean, I know how hard that might be to believe...but the gift in all of this, this awful, horrible, unfair thing, has been the immense love that has been flooding our lives since this all happened.

Saturday, mom resurfaced from a place that seemed so far removed from our own that I wasn't sure she would want to come back.  But she did.  And we got to hold her, cry with her, talk to her, laugh with her...and I continued my physical comedy streak (the first installment being the concussion I received while in the ER with mom, and then being relegated to a wheelchair for the remainder of that ridiculous friday, following mom's gurney with my wheels...Thanks, Zoe.) by falling into a fountain. Yes, I did that, it really happened; I fell into a fountain and even now I can't think about the incident without falling into a fit of giggles...and thankfully it had the same effect on the rest of the family, too.

Most people would fall into a fountain, then get a concussion, then go to the ER...but not me.  I went to the ER, then got a concussion, then fell into a fountain...Hey, remember the time I found out my mom was dying and then got concussed by the medical staff and rounded out the evening with a nice dip in the local reflecting pool?

No one would believe my life.

Kelly said that her day after getting my message about mom's condition was ridiculous, and her friends wanted her to write a book about it.  Then, she told them about my experience of the same day, and they said we need to write that down...I am thinking this would be a great idea.  I think I'd call it Tales from my mother's death -or maybe Lemon Ball Happiness is a better one...but in any case, from the ridiculousness of the weekend followed by the profundity of these last two days...I think this collaboration may need to happen.

But I digress, (greatly...Did I mention it's 2:30am and I am writing to channel the anticipatory energy I have buzzing in my limbs?! oops, sorry...)

I can't even begin to explain what an amazingly wonderful day yesterday was. There was so much LIFE in that room...and mom seemed so GENUINELY happy for the first time in...ages.  None of us had seen her smile that much, or laugh that much...and yes she cried, but they were real, genuine, releasing tears...

And today, while less effusive in its existence, was so pleasant...and the last couple hours before she was actually taken for her surgery were so simple and wonderful...It was just Mom, Kelly and I, hanging out together.  We filled the entire time sharing all of the amazing messages we have received from friends and family from all over the world with mom...We read her poems, listed people who had sent love, prayers, support, listened to music, I gave mom a clary sage foot rub, and we talked about all of the amazing people we have in our lives...and when they came to take her down for the big operation, she was happy.

Mom's friend Jennifer posted a version of this song for her to hear before she went in; it was the perfect song for this moment, and mom was so touched and pleased- especially since this was an old favorite from the time Kelly was born.  I've posted the version we knew below:


Mom declared afterwards that she has no more angels to call, because they have all come to her already.  They are here, and all around us - Angels in the form of friends, of family, of acquaintances she didn't have a clue she had touched until they gave their hearts to ease her pain...Angels in the form of doctors, nurses, medical techs...New friends, strangers, friends of friends, friends of her children...In seeing her younger daughter's overseas boyfriend drop everything to come to her, in the friend of her older daughter who bought him the ticket to do so without batting an eye...In the new friend who dropped everything to take her on the two hour drive to her doctor when she was in trouble...in the many many friends who have come to her or will come to her, in the flesh or in spirit...Every tiny thought, every good wish, every ounce of gratitude and love each of these people has sent to her has hit her hard, and I can see it cradling her and giving her such peace.

This is a terribly risky surgery for so many reasons, but even if the outcome is not what we want it to be, we have been given such a huge gift...this, this time, this love and connection, has meant more to all of us than we will ever be able to express.

Mama, we love you...and I think you might be starting to understand that now.
Peace.

Tuesday, October 15, 2013

Lemon Ball Hapiness

Full set of Ladybugs

I wanted so badly to write a thorough, meaningful post about the past few days, but I am utterly exhausted and falling asleep on the keyboard, so suffice it to say:

Thank you, so much, so so so so SO SO much, to every single person who has reached out to us, prayed for us, sent us vibes, sent us love...

Today was a divine gift.  I will never forget this day that I got to spend with my mother...my sister, my daughters, my husband, and two angelic friends all gathered in her room under solemn pretenses, only to have those plans canceled and replaced by an entire day of laughter, tears, stories, hugs, silliness, accomplishment...LIFE.  If you had asked me on Friday, I would have told you honestly that I did not think such a day would be possible anymore...and yet, we had today.

We. Had. Today.

We had an AWESOME today.

My Beautiful Mama's laugh.


Love is palpable, my friends.

peace.


Saturday, October 12, 2013

Bad day. No really...

Really, day? 

Today was just...

Bad.

Jumped in the car after I got the call. Drove through a driving rainstorm and passed about 4 accidents. Arrived to terrible news.

Brain...

Hospice. If we can make it that far. But we should. So we hope.

And right after holding my mother through the news that she is dying, I stepped out the door to call my uncle only to get hit in the head by some large piece of medical equipment on wheels flying down the hall of the ER...

So then I was relegated to a wheelchair with a compress on my face, and the dr is saying something about two weeks of rest because it's probably a mild concussion...

Silver lining:mom was too confused to notice, so she didn't worry.

By the end of the day she was unable to follow a pen with her eyes and she proclaimed that today was the first day of the month 2013, in the year 2013.

James reported that there was ANOTHER fire alarm at home. The 6th since we moved in. Terrified children in the rain...cats...

Had to make some hard phone calls, painful declarations...DNRs, consents...

I am still dizzy, my head hurts a lot (nice egg on my forehead, too...) and I can't even drive home to be with my family because of it, even though I can't go back in to see mom until someone can stay with Calli...they kicked us off the ward once mom got settled - no kids under 12.

So I am here, very very generously put up by Zoe, mom's friend who swooped in to take care of us all, cuddled with Calli -who is now sick- and failing to sleep thanks to sorrow and the pain in my head.

So yeah. Day. Wtf? 

Thank goodness for Zoe, for Fred, for their cats-especially Boy, who adopted mom, and waited in her pillow all day, and who is curled with us now...saviors in 'human' ways. 

Sunday, September 29, 2013

Tattoos: history, hope, healing, and, uh, family bonds, which doesn't start with an 'h'.

I've always been intrigued by tattoos.  Not the trendy, kitschy ones that one whimsically gets for fun, but permanent, thoughtful, well executed body art that holds meaning and nuance to its bearer has always been something I've found inspiring.

Back when I was dealing with the worst of my RSD pain, I was having a lot of trouble walking.  I knew, however, that using my foot despite the pain was the only way I could keep it from getting worse.  Among the many somewhat desperate (and in hindsight, stupid) ideas I had for how to accomplish this was the thought that I should get a tattoo on the bottom of my other foot...that way I'd have my own secret art that would only be seen in situations comfortable enough for me to be barefoot, that would represent healing to me - and more importantly would take some time to heal and force me to favor my 'bad' foot instead.  I had a few very intricate thoughts involving roses created out of various animals, or a rose in front of a yin yang with the stem following the curve...all imagery that spoke to me, but it never felt quiiiite right... but in any case, I was too young for tattoos and later I was too worried that having tattoos would make me less cast-able - and really, the bottom of your foot is a terrible place to get a tat anyway.  As I matured and began to view my body and the way it changed with age as work of art unto itself - nature's art, if you will -  it became less important to me to 'show' meaning and beauty with added imagery, so I let go of the idea of having a tattoo of my own.  I couldn't find anything that mattered in a way that was worth making a permanent mark.

Fast forward to this past January, when my mom got her awful diagnosis.  Suddenly something felt worth making a mark for. I had the thought that she and my sister and I should all get some sort of tattoo that would link us all together and represent our bond. Then I started to worry that mom shouldn't be getting a new tat just then, and started to think that maybe just Kelly and I should get something in her honor. Trying to hone in on just what, however, lead me down a long, existential chain of thought that culminated in me deciding that nothing could represent our connection more than our own bodies, since we were literally OF her, we had come from her body and our own bodies are made from her genetic materials...back to the whole nature's art thing.

So anyway, I let that idea go. 

That is, until I saw on Facebook that Kelly was planning to get her first tattoo.

I sent her a text asking what she was planning to get, and shared with her the mental journey I had recently been on with regards to tattoos. She responded by telling me that she was planning to get a small ladybug on her wrist, an ode to mom and the tattoo she has on her own wrist. "You want it?" She asked.

Mom has a story about one of her patients trying to swat the bug off her arm that always amused me.  When Cadence came along, she used to try to catch the bug on mom's arm, too!
That's perfect, I thought, I can't believe I didn't think of that.* It would be a way of linking us all together without mom needing to do anything, and it could potentially even imbue her own art with new meaning that she could cherish. It was simple, it was tasteful, it was a bold move...

We both sat with the idea and talked it though over the course of a few weeks, and hit on a plan that just felt really right, to both of us.

Unbeknownst to mom, we each designed our own ladybugs, in our own style, that fit with the meaning we each needed and wanted individually, and then made appointments to have them permanently inked onto our own wrists, in her honor, with love for her, and each other...

My final design

Kelly's final design


I couldn't be happier with the results. 

My realized ladybug
We told mom about it after it was done, which - since mine was done first and I didn't want to ruin the surprise before Kelly's was done - involved a few hilarious days of me sneaking around hiding mine from her like some rebellious teenager. She seemed touched, and when I got home that evening we gleefully compared ladybugs and made plans to snap a pic of all three of them together next time we get to see Kellebelle.
Kelly's realized ladybug

This was the right choice.  I am feel comforted by and so enjoy my little ladybug companion already - it feels like I've merely uncovered something that was already there.

Many Many MANY thanks to Gilda at Fatty's Custom Tattoz for the amazing work and joyous experience.  She agreed to take this on and fit me into her schedule on short notice, and her work is incredible.  She made me feel so comfortable, and talked to me about the whole story behind it before she began working.  And when she did, she started with a hug.

Gilda rocks.
Also, as a total aside:  It occurred to me as I was sitting in the chair that I got that skirt at a goodwill as a costume for my 8th grade musical. Wow.

* My friend Shino later informed me that I had mentioned this as a possibility months ago, though in this moment, I had no recollection of that, so Kelly still gets full credit for the idea...although we have also discussed how eerie it is that we both had the same instinct, and this just adds to that. Kelly calls it sibling telepathy. She's probably right.



Friday, September 13, 2013

Five years ago today: The Puppy Paddle

Five years ago today, we were at the Puppy Paddle with my mom, Kelly, and of course, Pepper:







After the russell sims water park closes for the season, they hold one final event before they dran the pools:  The Puppy Paddle!

Basically, everybody can bring their dogs to swim, play games, win prizes, and all that good doggy stuff.  Music, dog bones, tennis balls, and lots of happy romping jumping and splashing.  Pepper was a bit shy at first, but after some time and gentle encouragement, she was leaping off the edge with the best of 'em. 

Thursday, September 5, 2013

Sudden, slow, sticky clarity

I am ambitious. I am impulsive. But I'm also overly cautious and "practical" in a way that often leads me to thwart said ambition by reasoning away the impulses. This leaves me feeling frustrated and depressed, and it has to stop. 

I have to remind myself that just because something IS doesn't mean it NEEDS to be or that it is RIGHT. I need to learn how to take apart the box once I've thought outside of it. 

I need to be like the people I admire who choose something ridiculous and then make it a reality. I just end up hating myself when I resign myself to accepting that I am powerless.

I think back to working with Steve Wangh and the time he wanted to tweak some quirk of the staging during troilus (a very complex show utilizing at least four separate elements involving aerial rigs) and I, in my stage managerial role, said to him that we couldn't do it the way he wanted to and offered some alternatives. He asked "why?" And I explained that we would have to pretty much take down the entire set, re-rig it, and then rebuild everything around it in a new way-in my mind, as much as it should change, because it hadn't been in the original plan it was impossible. He thought for a moment and then said "ok. So lets do that."

And we did. And it was great. And I need to let myself be impractical and follow my instincts or I'm never going to be happy. I trained myself to live within other people's definitions, to find little ways to satisfy my creative urges and small rebellions made out of compromise.

I need to learn that sometimes, it is ok and even necessary to refuse a compromise that will squish the life out of you, or your work, or something deeply cherished.

This is something I think all my teachers  in college were trying to tell me, something that my psychologist has been trying to help me see, something that I've been trying to find permission to do for years...and it's all finally solidifying for me because of the threat of my children being tossed into a broken "necessary" system unless I do something about it. Somehow, I have to find a way to tangibly do something about it, instead if just whining and submitting to my(their) fate because the alternative is "too hard."

Now how the hell do I start?