2-15-09

i gave up my seat on the chinatown bus to a woman with a baby in her arms and a small child by her side. she was going to have the older child sit alone, next to me, when i made the offer to move so they could all sit together.
the baby she held was all bundled up in blankets it took me a minute to realize what it was she had in her arms. during the trip, the baby cried off and on, and she held the bundle of blankets and rocked her body against the seat to comfort it. it was a very ordinary gesture in a very ordinary scenario. i really noticed the tiny voice crying and the way she tried to calm the voice down. i thought to myself about the baby photos i was looking through last week. the way my mom held me. my dad too in these photos. i thought of all that care, all that time that happened before i could remember it. i thought how now i am so big, old, so far from being a baby anyone would hold if it cried. the thought started as 'i'll never be a little baby like that again' and turned into 'i am no longer anyone's child' it was a heavy lonely realization i had sitting behind that woman. i am a grandchild, i am a friend, i am housemate--the list continues. but i will never be anyone's child. it feels like such a sudden shift. i suppose there is no way it could've happened gradually. i just wonder how long it will take for this to be as normal as the past 30 years of being a kid, both a daughter and later a son. will it be another 30 years? will i become enough other things-some sort of professional holding a title, a long term partner with someone else, someone in a child's life--that it won't feel so hard to no longer be anyone's child in the world.

losing things

i think i've lost your mandala bracelet. i've been wearing it just about everyday since i found it next to your empty chair. i feel careless. i'm terrible with jewelry, i take things off and set them down without even realizing i am doing so. i like wearing it, even though it pinches me at times and i end up putting it into my pocket.
it makes me think about a talk we had years ago, way before you were sick and i probably thought you would live to be a really old lady.
we had lots of talks about reincarnation and after life and things like this. we were talking one day about ways of communicating from 'the beyond' so we would know the other was still there.
we chatted for a while and came up with that you would help me find things i've lost. this is something you did all the time for me. somehow i would lose something and look for it forever and you'd walk into the room and find it in seconds. even when i wasn't living at home, over the phone you'd have a suggestion for me of where to look and were almost always right.
i can't find this bracelet anywhere. the past few weeks i've been losing everything. i have even tried asking you for your help, hoping an object will just appear in my path and i can feel a little closer to you. none of this has happened. i'm not sure what this means about our agreement, or where you are, or anything. i want so badly to feel connected to you. i don't know where you are and if any of my words or wishes can be heard by you.

12-29-08

my grandmother said something funny today while we were playing yet another game of poker.

"i've never heard that before" i said

"i got if from your mom" she answered. '"she used to always say' with my luck, when my ship comes in, i'll be at the airport"

Christmas

i woke up christmas day morning in an empty house. well, empty of people. all night one of the cats slept with me, which was very comforting.
the elvis presley song 'blue christmas' is in my head, like someone put it on the record player as soon as my eyes opened up.

christmas eve

christmas eve:

i plugged the tree in while i wrapped presents. it was after midnight. the neighbors had a very loud party. there were colored lights pouring out onto the street like their living room was a disco. i heard a d.j. talking in spanish over salsa music for maybe 2 hours. a big pre-christmas party, i guess.
i had just retuned home to feed the cats and wrap gifts and attempt to pack. i went down to newark, de, which is where i spent the majority of christmases in my life. not to see my mom, but i passed the neighborhood that was home for almost 15 years. about a minute up the road from where my mom once lived is where the haines have a house. i've never spent any holidays with them. they knew my mom for about 25 years, almost as long as i knew her. they've known me that long as well. their home is very cozy. when i arrived they'd just opened a big bay window in their living room to let out some of the heat from the wood stove they had going. a big, natural tree stood in the center of the room, covered in ornaments. rose, the mom of the family, had been giving her 2 daughters ornaments every year, a tradition my mom started when i was maybe a teenager. right now i've no idea where any of the ornaments are. chances are they got carefully packed up and put into storage when my mom cleaned out my room in preparation for them selling the house that i used to go home to. this is before she got sick, when they were getting ready to fully relocate to maryland last summer.

at the haines i ate dinner with them and played christmas carols out of big books of music. there was singing, not me, i play the flute. the one daughter, elizabeth made cookies from cookie dough---mom and i used to do this. they smell the same as they did when i was 8 years old. i guess holidays are a way to organize memories from your life---rituals act as mile markers. my memory is terrible otherwise. but here i am thinking of all these things that happened on repeat every winter--cookies, tree ( though it changed from real to plastic at some point in my teens ) the ornaments that i made in first grade mixed in with nicer ones mom collected over the years.

they were so very nice to me. they don't act like it's the family plus one, they act like i've always been there. i guess it helps they've known me so long, and i have spent a lot of time at their house---even if most of that time was 15 years ago and before. the two daughters, whom i grew up with, looked like how i remember, only taller and more like women than girls. but they still laugh the same, act goofy and treat me like nothing has changed in all this time. this is comforting. not too much lately has felt familiar.
i wonder what it's like to grow up in a family like theirs--it's really all 4 of them, every year for the holidays? and it's always been like that? and they all get along pretty well. it seems pretty amazing, how relaxed it all is, and how sweet they are to each other while still very much doing their own thing. i'm glad to know families like this exist. they come together and share music, play with the dogs and cats. seems like a good balance of things.

they encourage me to stay and stay.
"you have to go back tonight?" they say

More decisions

I'm trying to decide what to do for Christmas this year. I realize I never have had to think about it before. There was one year when I was about 9 I went to visit my dad. About 4 years ago I went by myself to visit my grandparents. These are the only Christmases I've ever spent apart from you.

I have options this year---a few friends say I can join them and their families. I could go be an observer of other people's traditions and dynamics. My stepdad is having his dad over for dinner, and my stepsister will be around too. For years and years it was them and I and you. I don't know how much they feel like my family with you gone.

My grandparents say I should come visit them. They have pictures of you everywhere, and more stories than I've even heard. It might be nice--their home is the only place that has stayed the same since I was born. But they aren't you and they aren't family the way you always were.

You should be here. To go look at lights, to buy too many gifts for me, to watch a movie in your armchair, to get up early with your dad and have coffee before the sun is up, to wrap all the gifts so neatly, to know exactly what to get everyone, to tell me what to do for my stepdad, to put up my stocking filled with small practical things--chapstick, nice pens, etc, to sing next to me at the UU Christmas Eve church service. I never thought of us as having lots of holiday traditions or this time of year being a big deal. It feels more so with you being gone, and seeing a completeness in other people's families outside of me. I am reminded of friends who don't visit family at all, who have other traditions, who have made their own families, who don't celebrate any holiday this time of year. I wonder what might become a new tradition, if any. Or what to do in place of this time that will never be how it was. I know this year doesn't have to represent what will come forever and ever. I know no matter where I am, it won't be the same or feel as right as being with you.

11-24-08 words

it started last week at your service. a friend of yours stood up during the quaker style part at the end and referred to you as an activist. i'd never heard anyone use that language with you before.
he quoted johnny cash, his explanation for why he chose to dress in black (" " )
to be looking out for the little guy. your friend saw you this way.
my ex called you a language activist. that makes sense. you broke things down into tiny pieces, seeing the connections on all levels.
today i look through your books in your office and there is almost a whole shelf on black english/ ebonics/ education issues for african american students.
it occurs to me how much you always made a point of standing up for black english and how it was a legitamate dialect, with its own rules and that it wasnt that people were speaking 'incorrect english' as was often said but that the world was the one with the problem of not recognizing it because it wasn't academic english. how did you get interested in this? it has nothing to do with you or anyone you ever knew too closely, i think. but you learned from your students, friends of mine, friends of friends. you were interested in the ways people spoke , even the ones who dont' get a real voice in this country. i feel so proud of you, to know you, to come from you. i take a book about gender and grammar. i see on your shelves my book from my woman studies class. you were a strong feminist, didn't ever skip a beat with my queer and later trans identities. you were interestted in the way inner city kids talked and took that as seriously as any of the books you had to read for your dissertation. eric wants to keep some of your membership things going---planned parenthood, the southern poverry law project. you were into buying from catalogs that donated money to social change or envirnonmental organizations. i feel like looking out for others/ hte larger good was jus so muc of what you did, never ever witht the intention of getting any praise or even ackowlgenment .
they say of you at the service how you were driven to make things btter everyerehw you went. sometimes this played out as perfectionismn or criticsism of others ways of doing things, but mostly it played out in you serving others and i feel really proud that you were the person i called mom.

11-24-08 vitamins

you were always so private. i feel like a strange spy looking through your emails and your drawers.

i arrive this morning to start going through your things in your office.
it's something i was dreading this weekend when i agreed to come do it.
i didn't realize how much stuff i had given you, all art, and how much of it you put up on your walls. some of it in frames and everything. i feel both proud and sad, i don't want to take it back. i wrap some of it in newspaper and think who might like to unwrap it as a gift. it was meant for you, i don't feel like i have a use for it right now.

the the week your oldest and dearest friend that i've known in my time called you
'the universal mother' refering to your purse and how you'd have everything someone might need in it--a tissue, a band-aid...
your drawers at work are no different. i'm fortunate that you are so organized. everything in a ziploc bag. i find all the stuff you, or someone else, might have needed for your work day---tampons, pads in every size, a brush and curling iron, band-aids, lotions, anti-itch cream, it's all here. including pantyhose, also in a ziploc bag. and extra ziploc bags. snack bars, vitamins..the vitamins really get me. you were always so in to taking vitamins. always worried about calcium and how i probably never got enough--especially my years being vegan
'you really should be taking supplements' you tell me.
here they all are and i think how in your last year you ended up with osteoporosis, due to the terrible steroids they kept you on for so long and at such a high dose. you were 2 inches taller than me and by the end i could see the top of your head. compression fractures in your back you needed surgery on, 2 different times. all the pain your back caused you off and on this past year....meds you took to rebuild your bones. you were so good. walking, taking vitamins, eating well...that's how i remember you. how did you get so sick? all these bags of vitamins, some looking a bit moldy after sitting in a drawer for a year...how much control do we have? someone can do what seems like all the right things and look how it plays itself out.

11-17-08

my grandmother hugs me out of the blue. for a good bit of time, for us.
she tells me
'you're doing a good job'
it's very sweet. i thank her. i wonder what she means exactly by that?


it seems easier to cry about other things than to cry about my mom being gone.
it still feels too much to really believe, understand, or accept. it's only real part of the time, the rest of the time it's like how it was during college or even living in philly- we are just in different states, but if i pick up the phone i'll eventually get to hear her voice. i don't know how to believe the news this is not true.

11-11-08

today we met with a woman to talk about my mom's estate. at the end of our meeting she looks at us and says something to the affect of offering her condolences.

'you both seem sad' she says, not feeling sorry for us or bothered by this, but like she gets it. i don't think we are seeming especially sad, we are just trying to take care of business. but, we are very sad.

'it makes me teary eyed, she says', ' i went through this myself, it's been 25 years...' she gets up from her desk, goes and gets a tissue, it's subtle but she is crying.
' i lost my father, i was 19. it gets easier with time she says' i'm thinking how its been 25 years and just the sight of us dealing with this is making her cry, and wonder how i will feel in 25 years. 'don't mind me' she says dabbing her eyes 'i'm just emotional' or something like this.
i say something about how it's a universal experience--meaning my loss and her loss are intrisically connected, and it makes sense to me that one would trigger the other.

my stepdad says how he doesn't want things to change with time---what he means is he doesn't want to forget the time with my mom, he doesn't want her to get further and further from his mind and i relate to this.

i've been thinking of this. how at my friend's mom's funeral i cried when the best friend read a bible quote and got choked up at the end. and when my friend's sister broke down during the eulogy, it caused me to cry even more. and on a certain level i'm not sure who i am crying for---her loss, her sad heart, or my own. i feel like it all comes from the same place---our joy, our sadness, it all comes from and meets up somewhere and we are never alone in it.

11-15-08 mom's service

this is what i read at my mom's service today:

To my mom,
I have known you for 30 years. That is a lot of time to cover and there is so much that’s happened, I can’t do it all justice here but I want to say some things to you in your passing.

There is a reason the first tattoo I got was a ‘mom’ tattoo.
It started out as a joke---I’d always liked the iconic tattoos—the anchors, etc—and joked around about getting a ‘mom’ tattoo like like I’d seen on the arms of men in photos or movies.
But the more I talked about it, and thought about it, the more it made perfect sense to me to have one.

‘I really love my mom’ I told my friends
‘she is one person I know I’m going to love forever—I won’t ever regret having her name permanently on my body’
but it was more than this—more than how much I loved you in the expected way a kid would love their mom. Even more than liking you as a person, which the older I got the more you became a friend to me.
It was the sense of connection I shared with you.

That’s something I have always felt extremely lucky for , and proud of, and I know not every kid feels with their mom. over my life you have been there for everything, much more than you wanted to at times, I’m sure. Every challenge in school, every break up, every major life decision I have trusted your judgement, your level headedness, your patience with me to help me feel like I was moving in the direction I was supposed to. It is really hard to imagine being without your guidance as you were always the person whose opionin I trusted most of all.

I know I was not an easy kid at all. I can understand why you didn’t have any others after me. And you didn’t have it easy while you were raising me. There were many years it was just us, and you worked full time—keeping other people on track and being the person to answer all the questions—while working on your phd and taking care of everything at home. And you barely had any help. Your family all far away, you really did it all yourself. you were more than just a mom—you mananged to fill in for other family who couldn’t be around for me.

One of the amazing things about you is that you just dealt with it. You took the situation as it was, and took me as I was, as difficult as I feel like that must have all been you never stopped or felt sorry for yourself.

With all the things we struggled with and ways it felt like we didn’t understand each other, thinking of it all now, I feel like you were the perfect mom for me to have in this lifetime.
I want to tell you why:

You never judged me. I brought to you all kinds of situations other parents would never have touched and you took it in.

When I told you , in high school, that I might be queer, you didn’t react harshly to me.
When I decidced I’d like to go to an art college, you stood behind me, even though I had no real plan of what I was doing or how I would support myself. You never doubted me. For all the calls to you during that time where I just wanted to drop out and didn’t know why I was even there, you just told me to keep going. I have spent my whole life doubting my abilities, my place in the world, my feelings, but you never have. You thought I could do anything, maybe even things you weren’t sure you could do. I don’t know where all this faith came from, but I am very lucky to know someone in my life has had that much belief in me.

When, about 5 years ago, I told you I might be transgender, and I was panicked about what that could mean, the first thing you said to me was ‘you don’t have to figure it all out today’

I know people whose parents don’t talk to them, don’t accept and don’t try to understand their kids for being so different from how they want them to be.
I asked you one time how it was you could be the way you were
And you said something like ‘I guess a lot of parents have these ideas of how their kids are going to turn out—getting married, having kids, things like that—and I just never had that with you’

your capacity to accept and love someone for who they were is amazing. I know it wasn’t just to me, your child, but it was your way with much of the world. All my friends I brought home for a holiday or just randomly, unexpected, no matter how much of an outsider they might have been otherwise they were treated the same way. You’d send them home with food and act like they had been around forever. You tried very much to understand me on all levels- you never tried to tell me how I should be in the world. You encouraged me to explore who I was and made it safe to do so.

I wish I could ask you what it was that made you want to have a child and how you managed to be able to let me be so much myself in the process. while the world has given me messages that art is not important or legitimate, you signed us up for art classes together. While I felt like I didn’t belong because of my sexuality you gave me magazine articles about gay kids in public schools. When I was struggling to accept myself as being transgender in a society where a lot of people don’t even know what that word means, you were coming with me to the trans health conference to learn more. You never made me feel guilty or wrong for how I was, even when I was down on myself. I’m not sure how it is you could love so openly but I am lucky to have experienced such an example first hand. And I know it extended beyond me, beyond my friends, to your friends, your co-workers, even people you barely knew. Your acceptance and your almost obsessive desire to give to people-time, energy, money, presents, whatever was needed, without wanting anything in return, are things I admire so much about you and feel awed by. I am really proud that I have had such a great example to follow. I know I have thanked you over the years for all you’ve done for me, but the feeling has always been beyond what I’ve been able to show you. i hope, in my lifetime, I can do half of what you have done for me and others in the 30 years I have been lucky enough to be your child.

11-7-08

"I'd rather have had 24 years with an amazing mom than 70 years with a mediocre one"
this is what my friend had said last week and she repeated the sentiment again today as part of the eulogy she wrote.
i had never been to a funeral before today.
i had been to one memorial service for my friend and bandmate who passed away from cancer a few years ago.
this was a funeral in a much more traditional way. a casket, in church. we went to the cemetery. my other friend explained the way it all worked to me.
'i've been to too many of these' she said.
she sat next to me during the service, her eyes full of tears telling me 'if you need to leave at any point, just let me know'
we did end up stepping out at one point, and sat and talked for a while about the service and how it seems even at a funeral its not okay to totally cry and break down.

there was one lady who they took out of the room, she was sort of bent over and saying 'oh god, oh god' over and over and coughing and holding her stomach. i heard her friend tell her 'let it out, let it out' and i was glad that was the advice she was getting. other people fanned her, brought her water and tissues.
i feel like so much of our society, of the culture i grew up in particularly, is afraid of the sadness they feel, and i've inherited this myself.
i find myself afraid of opening a door that as soon as i do i imagine will never close again. it's hard to imagine that feeling will just pass through me or out of me.

i notice all the physical reactions my body has been experiencing lately---
hard to breathe, feeling hot, feeling shaky, light headed, foggy headed, unreal. feeling my heart is skipping out of beat ( which it does ) or just too fast or like it is just aching, almost like there is a hole in the middle of it.
i'm exhausted in a way i am recognizing as emotional exhaustion. sometimes its hard to tell if sleep even helps it at all.

10-21-08 mandala

i am looking for you everywhere.
i go back to the house where you were just living, and there are all these things that are yours, exactly where they a week ago when you were here. i find a bracelet you were wearing everyday, and it looks so empty to me. the space inside of it where your wrist belongs. i don't know why this small object is what gets me. that empty space feels bigger than the whole room i'm in.

i see it sitting on the table next to the chair that had been your bed. i don't know when it got taken off of you. i put it on my wrist. i'm terrible with jewelry, i pull things off of me without knowing it, but i want to keep this close. it seemed to bring you comfort. when you misplaced it, i ordered you another one. it's a mandala meditation bracelet, smells of cedar. i don't know how you decided on it to wear for the past several months but i don't want it to just sit on this table, looking so empty inside.

10-29-08 are you taking good care of yourself?

yesterday i made myself french toast--something my mom would make for me. even when i was vegan, she found a recipe for vegan french toast and made that for me. mine turned out pretty terribly, but i reheat it for breakfast today.

i decide to use up a bag of oranges i've had for a while and try juicing them along with some cut pineapple my stepdad sent me home with after our dinner 2 nights ago.
i have this new appliance--the magic bullet--that does everything. my mom would say 'it sews its own clothes'
she bought it for me. she ordered it off of a late night infomercial. for much of this past year she has spent a lot of late night hours awake, and i guess one of those nights her dad was up with her, and she got him to order 2 of them--one for her and eric's house, and one for me. i'm halfway through juicing these things and it hits me---she wanted me to have this because it can potentially do everything for me, in a hurry at that. she ordered it in september, it had been sitting unopened under the kitchen table. i thought it was an empty box.
'you should take that with you today' she tells me one day. 'what is it?' i ask
at first i thought it was funny and one of those things she shouldn't be spending her money on. over the past year she made a lot of unnecessary or exaggerated purchases; things were very confused in her brain. buying things more than once, or things she didn't really need or too many gifts for people---lots of giftbuying.
it's not until i am here alone in this kitchen that i see how useful it really is--something simple that can help me make things for myself. 'magic bullet 10 second recipes' is the name of the cookbook it comes with.

i feel overwhelmed with missing her and sit on the floor and hold myself for a minute. i look up and see the microwave, the toaster--both of which she bought last fall, before i was living at this house. i thought them to be unnecessary---i was staying with her and eric, why did i need my own microwave or toaster? i realize how much i got to doubting her judgment as she got more and more confused. i didn't know then i would be staying on my own and making food for myself in this kitchen. it feels now like she knew that she wouldn't be here for me, but that she could leave me with things--in this case simple appliances--to help me to care for myself.

'are you taking good care of yourself?' this is a popular question i've been asked so much over the past year.

'trying to' is what i usually say. i know that my mom wants me to.

10-28-08

it feels like you've gone on some kind of vacation and i am waiting for you to come home. that is how i feel. like you are gone and i'm not sure exactly where you are but you will be returning...

i keep having these dreams where it hasn't happened yet---you are not well, but you are still here. in the dream i am aware of time passing, of there not being much of it left, but you are still here. i wake up confused of the hour and the day and which part of my life is me dreaming and which is me awake.

it doesn't seem real. nothing feels very real right now. maybe this is me in denial. maybe this is how it always is and i have access to seeing it right now--seeing through reality.

when i think about the idea of never hugging you again i feel like there is this huge hole inside my chest. like the whole grand canyon lives there in my body. you can't see the bottom standing on the top, you can't tell how deep it really is. drop something in and listen really closely for it to land and guess how far down it goes.

Mama bear

The other night, before I left you sleeping in the bed you had been in since Sunday, I talked to you the way your friends who stopped by talked to you--as if you could hear everything, as if you might respond later somehow. I had been missing you responding to me at all, though.

"Maybe we can talk in my dreams," I said.

As it turned out I fell asleep fine that night next to my friend, but woke up with worry that kept me mostly awake for hours, listening to the birds and the day creeping in, thinking about you going away. I was in and out until I finally got up. Somewhere in my half awake half asleep stage I was riding a bike, and I passed a bear. It was a big deal, as I never see bears in regular life. Maybe I was biking in a city or the suburbs--down a big main street and there was the bear. Sometimes I feel like there is a message in animals I see--both in waking and in sleeping life--so later in the day looked up on-line what bears meant. Among other things I found this:

"...They are devoted mothers, raising and protecting their young from danger, teaching them to forage for food and fish in streams and providing them with all that they need until they are able to care for themselves properly. Mother Bears will fiercely protect her offspring from any harm or threat of harm..."

gold medals

i think we all want to believe there is some inherent order and goodness to the world. that no part of our struggle--individually or collectively--is meaningless. i think i often look at the world in terms of fairness and balance. often i can see how something terrible can lead into something good---for one person or for a group of people. how suffering can inspire change, new directions, new hope.

i remember when i was younger--maybe pre-teen or so--i watched the olympics one year. they always give all the backstories on the competitors, well the americans anyway. before they got up to skate or do their routine on the bars they'd play some music and tell these often really sad stories: someone recently losing a family member, some kind of accident that got them off track for a while, something really heartbreaking and hard. i remember i would always be hoping the winner would be whoever had the most obstacles to overcome. as if them getting the gold medal somehow tipped the scales back, and brought whatever the tragedy was into a light where things made sense. i would sit there very tense while they competed -'don't let them fall, don't let them fall' i'd say to some unidentified higher power as they did an axle and everyone held their breath. i know they always built up everyone's personal story so we would be more interested in watching how the games turned out. it really worked for me. i wanted to make sure these people--often young, my age or not much older--would have some sort of 'reward' in a way to all their suffering...it brought me comfort when they would win, and be crying and smiling and looking like all was right again.

i find myself thinking about this now and wondering what my stance is on pain, suffering, hard times, and if i still believe there is some sort of universal scale that is capable of achieving any equilibrium. this past year has really left me feeling like i no longer know.

i guess i always thought that a lot in my family didn't work out so well---especially on the dad side of things. i never had much of a relationship with my dad, never trusted him or knew him, or felt loved by him, and my first stepdad, whom i loved to pieces, couldn't be in my life for more than a few years and left me with a lot of sadness i still struggle not to carry anymore. some part of me has made sense of this, of not having a dad, and not having much other family involved in my life either--by the fact that my mom's always been so around, so dependable, and managed to do the job of 2 parents or more. i felt like that is what i got, an extra great mom and it made up for any lack of dad in my life.

right now it looks like she is going to be leaving me. of course it's not that simple, but leaving the world i live in. i feel really hurt, and mad, and it comes out sometimes as being mad at her, and everyone involved in her care up to this point-my total frustrations with the medical system, my current stepdad, everything...but mostly i feel like i am mad at life, the universe, the order of things. the same system i used to be able to find comfort in or turn to. because no matter how i look at the situation, it isn't fair. not only in the way i am involved but to her, to all the people that love her a lot, to her other adopted kid---a good friend of mine who sometimes calls my mom 'mom' as well--who lost their own mom at 10 years old---i can't help but feel like 'there is no justice in this' and like there is nothing that could come later that would set things right again. no perfect landing, no gold medal, nothing that would somehow make me trust there is some sort of system you can count on--that things will never be too hard without being good again.

i want to believe in the goodness of life. it helps when there is lots of this pain and darkness in my life or others. so many things come in opposing pairs--winter/summer, daytime/ nightime--and there is a rhythm to it. i don't know if i am looking too closely to see it or if the rules that apply to nature don't carry over for us when it comes to our hearts. maybe i am looking for a pendulum that swings side to side, that if you watch long enough you can know when it will come back again. maybe i just can't see it right now or maybe it just swings wherever it wants, not concerned with the same sense of balance or fairness i am

9-25 sense of humor

Eric usually gives the pills in the morning, but forgot today. So it's my job to get her caught up. She is sleeping and I hate to wake her but feel like it's better just to get it over and done with.
She makes a bit of a face, but swallows them down pretty quickly.

"You can now resume your morning nap," I say.

She catches me off guard with her reply, poking fun of herself,"you may now resume your slug-like behavior"

let's keep moving

We went out for lunch to our usual place after mom's acupuncture appointments. It's a chain place in a small shopping center with other chain stores, a dry cleaners and a place that sells lotto tickets. After we finish, I push her back to the car figuring she will want to head home. She's been really tired lately, though the acupuncture gave her enough energy to come here for lunch. It's a beautiful fall day and I think of asking her if she'd like to stop by a lake to feed some ducks ( something she asks to do on days she has more energy ) I start putting our things in the car and ask her what she'd like to do now.

"Push me around for a while"
"You want me to push you around?"

I look at where we are---the middle of a parking lot edged by a small sidewalk, a circle of stores around us. My first thoughts are how we should leave here-it's boring, concrete, ugly--and go to the lake, be out in nature, it's the perfect day for it. We we could be hearing ducks and geese and the wind in the trees instead of cars pulling in and out of spaces and people chatting with each other. But getting in at out of the car is such a task, and if she is not ready, the lake is not an option. So I close up the car, undo the brakes and start pushing.

She seems to like to be in motion sometimes, it doesn't seem important where we are going or if we are going anywhere at all, it's more about moving. She gets antsy at restuarants when she's done eating or sometimes even before the food comes. She often asks to be wheeled outside and that is enough to get her to relax for a while.

So we go back to the sidewalk. It's such a beautiful day out, I start wondering how important it is where we are---the sun is so nice, and though she doesn't say anything about it, I guess that it feels good just to be out in it. The big open space of the shopping center works well for feeling the sun and maybe that is more healing than I'm giving it credit. I wheel her up and down the sidewalk a few times, wondering if people outside for lunch notice we aren't really going anywhere, just doing laps from one end of the stores to another. I take her behind the stores, where there are trash bins and back doors and and other than the occasional person stepping out from them to set something out, it's completely quiet, and it's just us. I think 'this is quite a scene, the two of us back here, not coming or going from anywhere, just wandering, wheel chair and all' I feel like I'm in some slow movie where nothing much is happening, we are moving through the still frame, no dialogue. I still find myself thinking about the lake, about how it would be 'better' how she should be somewhere really special and beautiful. I look at mom and she has her eyes closed; it isn't a concern of hers how pretty the landscape is. She just wants to be warm and moving.

We keep this up for maybe an hour and a half, I lose track of time going in circles, retracing our path a few times. I keep looking to find somewhere 'prettier' nearby to go, but it's too hard to cross the street cause of traffic, to go up a big hill that would be needed, and there isn't much around us anyway besides other buildings, so circling the shopping center it is.

At least two times I take us back to the car, ask her if she is ready to go, but she isn't.

"In a bit" she says "Just push me around a little more"

This is the kind of day she barely says more than that to me, and she seems in a state between awake and asleep. I feel lucky to be spending time outside, thinking of friends stuck in offices and how that could be me and how the previous day mom didn't leave the house at all. So really we are doing pretty well, I think, we are moving, even if we are not going anywhere.

matching tattoos

i was putting a blanket on her and she scrunched up her forehead and asked
"did we already talk about tattoos?"
"tattoos?" i asked.

mom-i want to make an appt with carla to touch up my tattoo

q-ok...

mom-and i might want to get another one

q-another one? really? what of?

mom-one like your mom tattoo with the birds and the banner

q-will it say 'mom' as well?

mom-no, it would have your name

q-my name?

i actually already sort of knew about this cause i saw one of her late night notes to herself written in orange sharpie sitting on a table yesterday that mentioned tattoo ideas and it had my name near it and i thought to myself "she isnt thinking to get MY name tattooed on her shoulder is she? that would be nuts"

q-it would say "q?"

i guess i was thinking "adrian" ...what do you think?

"q" is less letters, it would hurt less

arline, my mom's mother, is sitting at the table nearby. she pipes in "maybe you should talk to your nurse first..."
yesterday the hospice nurse charlotte dug through drawers in our house to find special no-stick bandages and tape because she was afriad of how fragile my mom's skin is and she didn't want to redress her recent skin tear with the big band aid type thing she had. she was even afraid to remove the current dressing and went scavanging for some sort of adhesive remover we didn't have. in the meantime, my mom's dad who doesn't hear so well and didn't know what she was looking for, gently pulled it off.
but it is a little nuts to think my mom is too fragile for a regular band-aid but she wants to go get a brand new tattoo.

i add 'tattoo' to the board eric has started for her that's labeled "elaine's short term memory"
2 items down from where it says "memorial planning"
and i think, what does it mean that she is thinking about doing something so permanent to her skin? most recently her and eric have been talking about her memorial service and he recently found a place that does cremation and they've had discussions about that...do these things go together in her head? does she not realize the contradicion? does she not need to? it's confusing to say the least















i add it, i think how eric i'm sure would think it crazy to drive 2 and some hours to philly to get her tattoo touched up slightly and for her to get a brand new one at that

mom-i also want to get a maple rabbit

q-a maple rabbit? what do you mean?

mom-like your band

q- do you mean the word "maple rabbit" or a rabbit that looks like stuff we make???

mom-like you and molly

q-oh

i look at my elbow

q-this rabbit?

mom-mmm hmm

q-does that mean you are going to be part of the band?

mom-well i guess that part would be up to you

shes been so much funnier lately, playful, more relaxed. i wonder what it is that's allowing her to do so. i love it, i love her.
my ipod shuffle finds itself playing 2pacs "mama" on my way back to my house and i don't feel sad like i think i will, i feel really grateful today. for her and for any lightness she may be feeling, even if it's only for today.