Angry and sad.

Tomorrow is a really big day, but I'm up late crying.

Four hours ago, in the car on the way home, I started crying.  I was so angry at my mom for dying.  I guess I'm always a little angry at her for dying.  Sometimes it's really hard to imagine that she's not just going to come back.  I mean, of course she'll come back, she's my mom and she loves me, and it doesn't make any sense that she wouldn't.  Except, she's dead, and she not coming back, which is flippin unbelievable to me, again and again.

So anyway, it's hours later, and we're exciting laying in bed talking about tomorrow, and we hit the lights to go to bed, and my mind just wanders with this little tiny dog Zoe (formerly Mom's, now Annie's buddy), and I started thinking of Hannah, our little wiener dog, and the time I brought her to the high school, long after I'd left for college, hidden in my bag, and Mr. Hesselbacher, the psychics and chem teacher, saw me and told me I couldn't have the dog at school, and I said, why?  Because it would make the children laugh and play, laugh and play, to see a dog at school?  And he smiled his truly rare grin.

And I thought about the day she died, hit by a car, and how it was my fault, and I wondered how it was I couldn't catch her, and why I gave up on trying to catch her.  I feel so bad, and I wish I could back up to that day, and make sure to catch the dog, and then maybe our neighbor Roger Peterson wouldn't have come to our door with tears in his eyes that night, and maybe everything would turn out different.

And the I wonder how death could have been so close and my fault, and I didn't learn anything from it, didn't see the loss that was coming later.

And then what really gets me crying is all the details of that day NOT about Hannah, but that I remember so clearly, and so completely gone.  Watching TV with my sisters and mom in the familiar furniture in our red living room eating Cannova's pizza and that pizza from the resort town, too, which Annie favored.  It was a special occasion -- I had just gotten home from Colorado that day, and it was the final episode of the first season of American Idol, which they had been following.  And my mom, alive, feeding Amy dinner.  Alive.  My mom.

I know none of this is rational.  I'm not crazy or stupid.  Just sad, and angry.

How long has it been, asks a friend.  Fourteen months, four days.

Memories.

So clear sometimes they break my heart.  That was a GREAT day.

Goodbye, stuff.

Things of my moms that I don't really want and never really liked are on their way to Goodwill right now.  My husband is delivering them, because I will pull them out at the last minute.

Two frames of of generic pictures of leaves she bought at Target and I remember chastising her about -- they were generic, it was weird she liked them, and she didn't need to spend money on things -- and then I hung them on the wall for her.

These little glass kissing birds in a dish.  They aren't as cute as they sound.  What is their deal?  They aren't anything, but she kept them.  She's had them my whole life that I can remember.  Did I give them to her?  Did Lori?

I've broken down and called my husband to tell him to pull the glass birds out.  The first two tries my phone wouldn't work.  Is it some kind of sign not to let them go?  Or maybe even a bigger message to let it all go?  Except I don't believe in those things.  The third and fourth tries did go through, but he didn't answer so the glass birds are gone.

Dead.

I remember my mom is dead about a dozen times a day.  There are other part of the day where I know she is dead for hours at a time, but then I'll get immersed in something, like just now, when I abbreviated signature as "sig" when organizing documents,  and I cringed at the word, and realized that was because it makes me think of smoking, and I thought about how much my mom HATES smoking, and then I remember she's dead, and it is like a landslide, being hit by rocks from all directions that just keep coming, and I'm doing my best to paw my way to the top, but there is no top.

It's the same when I look a picture.  The first feeling is the calm of seeing of my moms face, followed by the fast slamming of a door on my fingers.  It hurts so fast and so bad and you don't even see it coming and aren't sure what just happened.

I get so use to typing wildfire on my computer and when mistakes happen, really big mistakes that quickly undo everything good in a document, things I've spent all day on and need for tomorrow, my heart pounds and face flushes, and my fingers fly to control+z and in a second I'm able to carry on like nothing ever happened and it practically didn't.  Sometimes my brain misfires and when I'm hit with a sharp realization of the new reality, I feel control+z through my whole body, this extreme impulse that I can't act on.

I want to change things, I want to fix the probem, and that I can't causes this screaming in my head that will last for days and never has to catch its breathe.

Gold Letter

This letter is worth is weight in gold to me.  Every little detail is treasure.  I'm sharing it for the people out there who knew my mom, and to encourage anyone and everyone to write letters like this to the families of those who leave us. This is the greatest gift.  

From my mom's childhood friend:

You did a wonderful job writing about your mom [in the obituary]. So many of the words, especially mischievous, made me smile with recognition. Especially as kids (and as adults!) I can remember that gleam in her eye and that devilish laugh. 

The other morning I just stayed in bed trying to remember everything, like I wanted to capture more memories and store them up in some safe place to return whenever I needed a smile. Here are a few of them, some fragments, but like all memories, very precious.

I met Kim when I was 7, she 8, and it was always a big deal (for her) that she was older that me- 1 year in school and 6 months to the day, Sept. 21st and March 21st. Sometimes when we hadn't seen each other in a long while a birthday would come along and we'd reconnect. This past year was a big one as we both turned 60.

I remember playing badminton in her backyard. The net seemed like it was set up for the whole summer. We'd play for a long time, and she was full of wisecracks especially when she made a bad shot and told me, "You should have been standing there." So simple- such fun.

I remember albums your Grandpa played. One in particular by Prez Prado (how do I remember this?) sticks out in my mind- "Cherry Pink and Apple Blossom White". I remember hearing music swell up the basement stairs as he played the saxophone. (I think it was the saxophone?)

I remember "The Kim & Lin Show". Planning for this event took weeks. Everything from planning acts, "lip-syncing" songs (no "karaoke" at the time), comedy sketches and dance routines, rehearsing in the garage, making tickets and programs, (yes, we actually charged for this), selling popcorn and Kool-Aid at intermission. One act that really stands out in my mind is your mom singing "Lazy Bones" while your Uncle Ken provided the backdrop lying with a big straw hat over his eyes and a piece of straw in his mouth.

I remember how your Grandma called your mom Kimmy. I loved that.

I remember your mom's pet rabbit that lived in a hutch next to the garage. I marvelled that her parents would let her have a rabbit. It was so cool! Sometimes we'd take her out and play with her (I think it was a her.) Her feet would go back and forth if your mom threw her up in the air and when she landed she'd make this soft noise. No, we weren't the kind of kids who tortured animals. It was just something we did and we'd laugh hysterically. I know, we were nuts.

I remember joining your mom at Vacation Bible School at her church. It was either a small Baptist or Bible church over on Central Road. We were a little older- 5th, 6th, 7th grade or so. Jesus songs, a play. It was different, but it was good.

I remember your mom was so cute. She could always pull off a short haircut and look adorable. She liked cute clothes- a little tailored, sporty. When we were really young we both had saddle shoes.

I remember your mom being my friend who liked to do more active things, not just Barbies, although she did have a great set of Wedding cut-outs or paper dolls. We'd throw the softball, practice cartwheels, and most importantly, ride bikes! We loved our bikes- always a ticket to adventure! Your mom's bike was royal blue with a little white trim. We'd go on these great bike trips into Mt. Prospect and Arlington Hts. and be gone for hours discovering different stores, libraries, parks, etc. We found this tropical fish store in Mt. Prospect, "The Aquarium", that we'd always check out. It had tons of fish tanks, each with a tiny handwritten sign taped to it reading, "Do not tap on the glass." They must have known we were coming! We'd wind up at Cock Robin in Arlington Heights and have ice cream to fuel us for our return trip. We thought we were very cool, and I still think so.

I remember in later years keeping up with your mom through my mom and your Grandma Shirley. They would see each other in the Jewel or occasionally get together and I'd always ask my mom, "How's Kim?"

I remember coming over to your townhouse in Schaumburg and your coming out to Palatine. We had a good time putting you kids together and seeing how it worked, laughing, and, as has been said, not taking anything too seriously. We took you to the pool and I helped your mom with a garage sale. 

I remember visiting Galena and passing your dad's law office and realizing that I needed to find out where in Galena your mom was. I walked in and did the "You don't know me, but" to your dad and he immediately dialed up your mom. It was great! Such a surprise! I went over and got to meet Amy.

I remember another time I was visiting Galena with my girlfriends. As we were leaving I insisted we go by your house. Perfect timing! There was your mom walking down the street. I jumped out of the van and gave her a hug. It was great!

I remember your mom coming out to Palatine one evening and sharing some wine as we sat on our little deck. We talked and laughed and my husband thought she was special too.

I remember visiting your mom in Sleepy Hollow. Last time I brought meat loaf sandwiches and she seemed to like that. The computer was always on for intermittent chats with you girls. We'd, as always shared and updated one another on "the kids". I enjoyed hearing about how Amy was doing- watching Idol, her camp, her home, watching Annie's news/weather videos, hearing about Al's wedding plans. She so passionately loves you girls. 

I remember, most recently, meeting your mom at California Pizza Kitchen in Arlington Heights. As usual, we picked up right where we left off. She was looking good and feeling good too- enjoying her longer hair, "softer", she said, and was proud of leaving the walker behind. We parted with a hug- I left for work, she for an appointment. I remember feeling grateful.

I still feel grateful. And very blessed. I love your mom very much and know she'll always be a part of me.

Once again...

... sitting at my desk crying.

I was such a resentful little ass to my mom sometimes.

Miss you, Mom.  Every moment of every day.

Sisters.

Some day -- good days -- when I talk to my sisters, it's like Mom's not gone at all.  Today was one of those days.

New phone hobbies with Amy

Adding to our standing traditions of singing, singing, singing, and reading Mom's blog, I've started reading Amy my blog, and also weird news headlines (thank you, Daily Mail).  Tonight she asked me "so anything weird happen today?" and I was exhausted and pissy, and now of course I feel bad for not reading them to her.  I should start saving really good ones so I have a backlog.  Or, we could focus on real news...  

Also new: writing emails to her staff together when there is a problem.  She tells me problem and I say "do you want me to email?"  She says "I'll tell so-and-so tomorrow" and then STRESSES and tells me the story again, and I ask again and she says yes.  I take exactly what she's told me, draft an email and then read it back to her a dozen times till it is i just right.  Until she has her own computer, this is the best we can do.  

On deck: Amy's book club!  Amy is reading Half Broke Horses right now, which I finished over vacation.  She called me tonight VERY excited to ask "DOES SHE KILL HIM?!"  "WHAT?!" I screamed back not knowing what she was talking about.  "THE BOOK!!!" she told me.  "I THINK HE DOES!!"  Amy's next two books are ones Walker hasn't read yet -- A Prayer for Owen Meany, and Middlesex -- and he might read them at the same time so they can chat.  And I'm going to start thinking of more books and try to get the fam in on this.  

We are getting into a flow, little by little, finding things to talk about that aren't the heavy stuff.  I'm not talking about Mom.  We talk about Mom all the time.  That's not the heavy stuff.  The heavy stuff is how people treat Amy, and that they think they can treat her that way.  We talk about it a lot, as we work through the damn to day to day issues, and try to build towards something better in the future, but it can't be the ONLY thing we talk about, because that is not a healthy or real relationship.  

I'm tempted to fly off a rant about her service provider moving like a snail that is deliberately being snail like, but I'll resist.  Just know -- it's still there.  

All these posts have the same subject.

Mom.  Grief.  Love.  Amy.

Anyway...

Amy and I have a new thing where I read to her from Mom's blog each night.  She loves it, and she laughs and laughs.  I find it excruciating, but it's not like I'm not reading these posts and sobbing my face off other times.  And we don't sob when we read them.  But there always this little part of me that is totally ready to FREAK OUT and start crying.  Pipe down, grief monster.

I have to find more writing of Mom's to read her.  I know there is a diary my mom wrote when I was born, but I've been saving it.

We follow it up with our other tradition -- singing -- anywhere from one to eight songs.  Special songs.

I told her the next time we'll see her is May 5.  Cinco de Mayo.  The "anniversary".  The day when I was just sitting at home at my table in my sewing room, logged in to class, I think, while I friend gchat-ed me  the proceeding of what was going on where she was, and I relayed them to another friend.  And it was silly and fun, and I was happy.  I'd just ordered Mom's Mother's Day present on Etsy.  And then the phone rang.

Anyway, I told her we'll see her May 5.  Earlier today, she hinted that I should up this weekend.  Or I should say, she acted like we'd planned for me to come up.  We need to make our plans in advance and know them and stick to them so she can look forward to them and so that there won't be their weirdness about every single weekend.  Of course, I'd have to get over my making plans more than 24-hours in advance paralysis that I've also had a touch of but has been particularly strong lately.  And by lately I mean the last year.

You were here.

You were here for 22,141 days, until suddenly you weren't anymore, 348 days ago.



Family vacation at Delta Lodge in northern Wisconsin -- 6,134 days ago.

Wish you were here.

I miss you.  Every single day.  Nine months now,  Mama.

It is getting better, but really, it's my life that is getting better, and that makes the hurt easier to stomach most days.

Other days, though, how much better life has gotten in the last few months makes me sick.  All of these things are coming together, but the biggest loose end will never be tied up.  There is this big unmendable rip in the fabric, and some days all I can see is the rip.  

Some days, I feel sickened that I can even feel good about things without you here.

Some days, I'm a festering pool of resentment and disappointment, and overwhelmed by doing right by Amy, and so sad that I wasn't there for you you more when you were trying to do right by Amy, and so angry that you were so alone in the world, and full of self pity and obsessed with the idea that it is my fate to be so alone in the world, too.

Most days, when I wake up in the morning, I call Daisy and she leeps up on the bed next next to me and we cuddle till the coffee is ready, and I'm so thankful for her.  Some days, though, I look at her and all I can see is why I have her.  Because you are gone.  She is the dog of broken dreams.

I wish you were here.

Annie was sick last week, and I'm sick this week.  You'd have driven in the city with Zoe to see Annie.  You'd have pulled up in front of her building with your blinkers on and honked and called until Annie emerged, sick and pj'd, to carry in your bag and park your car, and when she returned from parking the car you'd have made it half way in to her apartment and could be cursing with a smile as you got up the steps.

Then, I'd have convinced you to visit sick me this week, since you visited sick Annie last week.  You'd be claiming you were going to drive home tonight, but then you'd stay.  I'd be totally overwhelmed by Daisy in our little house and all the hair she drops.  Later, we'd lay on the bed and watch our crime shows, and you'd bemoan the tiny screen, but also tell me again how you were going to start watching things on your laptop.   You'd keep touching my relaxed ponytail, and tell me again how you "can't believe that's your hair".  I can hear you saying "Walker, hon, can you do me a favor?"

God, I miss you.

I miss you.

Everything Makes Me Cry: take 8,462

I was researching something for work, when this popped up.

And then I thought about how no matter old I get, that kids face stays the same.  And then I wondered how old he was now (answer: 40 -- http://www.imdb.com/name/nm0082526/).  And then I thought about how the era depcicted in that movie is furthur and furher in the past.

And them BOOM.  Mom is dead.  I won't be watching Christmas movies with her.  She won't be aging either.  I'd really like to cry, but it's not a good moment for that, so I'm doing this instead.

Speak Up, Speak Out

I'll never do this experience justice with whatever I write here, but here goes.

On Monday, Annie, Amy, Walker, and I met up in Springfield to attend the Speak Up Speak Out Summit 2011, sponsored by the Illinois Council on Developmental Disabilities.

Last year, when we visited Galena for Mom's 60th birthday and reconnected with with Lynn Gallagher, long time friend and council member, she told us about the summit.  Two months later, Mom and Amy (and Erica, Amy's assistant) attended.  Walker and I met them there and also attended part of the conference, but it was really their experience.  We all left with a glimpse into a different life Amy might lead, but it was still hard to imagine for me, especially given that most of the folks leading these lives had minimal physical disability.  How did everything we were learning apply to Amy?

I'll admit that I was feeling exhausted and weary as we packed and loaded into the car to head to Springfield.  And then we got there.  As we walked in, I could feel the comfort of 400 people who give a damn, packed in one hotel.  In line to have the front desk call Amy, we ran into Cathy Christensen, THE Cathy Christensen of the Self Advocacy Council of Northern Illinois, whose mailing list I am on, who recognized Amy's name.  And then we headed upstairs to a beaming Amy, more on fire and excited than I've seen her in a long time.

Things that happened in these three days:

1. SOMEONE got intoxicated for the first time.  One third of a margarita, and three sips of beer.  And SOMEONE was a riot.  
2. We saw old friends.  So many Albees! And the Albee-in-progress!
3. We made new friends.  Last year, I remember mom pointing out two young women to me that reminded her so much of Amy.  This year, we got to know them.  The first class we went to, on microboards, was led in part by one of these amazing ladies, Jessica Martin.  When we were given the opportunity to ask question, Annie and I were on fire.  I feel like a giddy teenager, but we totally hung out with Jessica and Paula, and Paula is from where we live!
4. We talked our faces off about the saga that is Amy's current house.  Probably too much.  To our old friends, and to our new friends, but it felt great to express these concerns and complaints to people and have them say WTF?!  It's nice to have your own WTF feelings validated.
5. We heard about their living situations, which were better and more in their control.  
6. We got information.  A LOT of information, each tiny piece deserving its own post.  
7. Ideas for a better life were born from this information.
8. We met awesome and powerful people in the state of Illinois
9. We danced our faces off.  
10. Amy blew us off to go attend classes on her own, without us.  LOVE IT.
11. We saw the future.  Amy will have her own life, the one she chooses.  She will live on her own, or with friends.  She will run a business or hold a job that actually pays her.  She will make choices about how she lives.   

Freaking out is only natural

Right?  I think so, and I have to remind myself.

In my mind, I should be good at all this.  I grew up with Amy.  For the first 12 years of her life I was super sister.

But it's been another 12 years since then.  I was a great sister, sometimes like a second mom.  But I WASN'T her mom.

I'm still not her mom.  But I'm her main line now.  And it is different that being just a sister, with Mom as the main line.

It is completely overwhelming.

I know when Amy was born, it was not what anyone expected.  She was two months too soon, and the next day the neurologist gave mom an earful on what she could expect.  My mom had recently told us -- it felt like a death.  Loss and pain and isolation.  Is sounds terrible, I know, to say it felt like a death.  She was not talking about Amy, she was talking about the solitary world she was thrown in to.

I feel lucky that before my mom died, I read a post written by Kelle Hampton, about the birth of her daughter Nella, and shared it with my mom.   This post and this picture in particular made me feel for my mom in a way I never had.  My mom's story was different, but this story opened by eyes.

Maybe it's ok to freak out because if I stop saying to myself that I should be ready to handle this, that I should have known this day was coming, and instead look at myself and say, ok.  Overnight, I became (essentially) a parent of a 24 year old with Cerebral Palsy and Epilepsy, with significant physical disability.  I never felt this weight and this pain before, in all my years of loving and caring for Amy.  My mom had 24 years to get to this point, and it was still overwhelming and upsetting at times.  So, I'm six months in, and it's a whirlwind of anger.  Anger for Amy, that this is what she get.  Anger for me, that this is what I get.   Waves of extreme enthusiasm and energy, followed by waves of deep sadness.

I am so so mad.  I'm mad Amy can't have everything in life she's entitled to, and easily.  I'm angry that I have to take care of her.  I'm angry that I love her so so much that the state of her life and her tears tear me to pieces.  I'm angry my life isn't easy.  I'm angry I'm so angry and embarrassed by these selfish feelings.

And I miss my mom.  And I am so angry and sad she is gone.  Everyday, I am sad and angry for yesterday, for today, and for every day after.

Tragedy and Fleas

Annie visited for Halloween last year, and brought a sack of laundry.  A week later, we realized our cats were covered in fleas, courtesy of the laundry.  We stuffed all our clothes and linens into garbage sacks to be taken to the laundromat.  We treated the cats for fleas, sprayed down the rugs and furniture, and slept in our sleeping bags.

The next day, Biggie died.  Life was in shambles.  I didn't know up from down.  I went to bed in tears.

In the middle of the night, I was woken my vigorous licking sounds from Charlie, our tiny pudgy cat.  As I lifted my head, my hand touching something wet.  And.  It was poop.  Just a little bit.  There was a little bit of poop.  Everywhere.  The cat was like a bingo stamper.  A poop stamper.  All over our sleeping bags.  Thank you, flea treatment!

We were already on our backup linens, and now they were covered in poop.

It was like the universe said, "wow.  Your step-brother is dead.  Life is never going to be the same.  You feel like things will never be the same, and couldn't possibly be any worse right now.  Well, what if I covered right now in drippy cat poop?  Worse, right?"

Today was a pretty shitty day.  And of course, we again have fleas.  The pets are treated, the linens are washed.  And the bingo stamper has been washed with cider vinegar and is being kept in the bathroom.

Rooting for bowel control.  Stop laughing universe.

-----

I can't look at old photos of my mom.  Specifically 2006.  Right when we thought things were going to get better.  We were going to work through family stuff, and Mom was going to build a life.

I was so hopeful.

I'm still so hopeful.

Just wanted to say

Hey, Mama.

I got the job.

Home is not a house but a feeling

This week, I'm haunted by commercials with a home theme.

In a Lowe's commercial, that Hulu has decided is my new constant companion:


Home is where you are.
Home is where I want to be...
Home is not a house, but a feeling.

Advertising Discovery's "Disappeared":


You put your arms around me and I'm home.

The music that grabs my attention, and then within seconds, I'm thinking home home home home, and then looking up the song, then discovering it has very little to do with the home I'm mourning, and so much more to do with the home I have and that I'm building.

But even so, it continues, and I start listening to other songs I know about home.


 Home is where I want to be.


Every day's an endless stream of cigarettes and magazines
And each town looks the same to me, the movies and the factories
And every stranger's face I see reminds me that I long to be
Homeward bound, I wish I was homeward bound.

Which inevitably leads the REAL tear jerker.

GO, FIGHT, EAT BRAINS TONIGHT!!!

What do we want?  BRAINS!!!  When do we them?  BRAINS!!!

Halloween, I love you.

Zombie cheerleader and football player, inspired by the football players in Beatlejuice who follows around the afterlife intake lady Juno saying things like "Hey, Coach, I don't think we survived that crash."

I went back and forth on this Halloween.  As I often do, I got an idea, and then I fixated.  I HAD to do this idea.  Even though it wasn't coming together, I could tear myself off it.  And as you might have noticed, I have the blues.

At the last minute, I decided to go for it, and had the most fun I've had in six months making Walker's pads, painting the jersey, putting a weasel graphic on the helmet, fitting the cheerleading uniform, and ever so obsessively making the text for the front of the cheerleading outfit.

I couldn't bring myself to destroy these.  No fire, no holes.  Just a lot of blood.  Too many dollars and too much potential in these bad boys.

Costume how-to, including make-your-own football pads (not to be used in athletics!) in a future post.

I need to work on my raw wounds.  The neck slash was not bad, but I'll go thicker on the cut line in the future.  The skinned/raw face size could be better.  Maybe tinting the latex that's the base? Or maybe painting a thin coat of the Ben Nye thick blood before I apply it in clots.  Walker's wound has a really sharp edge to it, but that didn't show when the helmet was on.

The zombie Girl Scout made a reappearance!  Turns out what fits me as a short fitted dress fits my awesome friend like a knee length cinch dress.  Yay!  Also, it turns out that friend is GREAT at zombie eye makeup!

Pictured here: zombie Girl Scout and recent immigrant who acquired her citizenship through dubious means (also know as a Russian bride).

Steps

I setup email forwarding from her email.

I stuffed envelopes with copies of her death certificate to send to creditors.

We are going to her house this weekend, to load a uhaul with what we want to keep.  I've emailed piano movers.  I'll book a truck tomorrow.

I can do this.  I have to do it.

I kind of wanted to spend another night there.  And another.  And another.  We said we already spent our last night there.  It was unremarkable -- the weekend I said we'd have a yard sale and celebrate my birthday, then canceled.  I only half believed it was our last night, even as said it was.

I was going to take it back -- have us stay there again, but now, I think the power has been turned off.

I want to stay there again, and curl up in mom's bed, on mom's couch.  I want to have my quiet time laying next to Amy talking softly and singing.  It's my favorite time with her.

I want to hear the sound of the door opening, of the heat going on, of mom shuffling through the house in the dark.  I want to wake up to sounds of Mom and Amy, have Mom saying to us before our morning cup of coffee "ok, before you leave, there are three things I'm going to ask you to do."

We will never have that place again.  It will be just a memory, that fewer and fewer people in my life share.

I just want to go home.