Homeward Bound!

As always, the Northwest was great.  More photos and stuff (food and food and food) to come.  Most of the way home.  Decided at the last minute to crash at Auntie-Mom's late last night instead of heading straight home so we could see our girl today.  Lounging in backyard getting some work done (WORKING ON A SUNDAY; I AM A GROWNUP) before heading on to visit our girl and then head home.

I'm so behind on updates, and I must share Amy's face when she got her computer!

Still waiting on the maybe-Amy-house.  Nothing new at Amy current house (same old crap), but I'm ignoring it for now because so help me god, we are getting out of there soon and I can't keep spinning by wheels on that bullshit.  I'm doing my best to keep her spirits high, but I'm done dealing with those people for anything but clear cut abuse.  We instead are investing heavily in having a good life ready to go the moment she is out of that house -- computer, bike, room at our house.

Most important: tomorrow at 3 pm big stuff happens!

Instead of packing for our move...

we're packing for a visit to Tacoma!  Woohoo!

Memories.

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

Frozen.

With many memories it's hard to know what I remember from pictures and videos, and what I REALLY remember, without prompting.  There are tons of memories, but also TONS of photos.

Then there are some memories so vivid, and without a single photo.

I wonder if Annie remembers.  I wonder how old she was... six?  I wonder how old I was.  I was young enough to believe that anything we did was because my parents, as adults, had an inside track on everything that was neat to do, and if they were doing it with us, it was because they'd done it a thousand times before and were pros at it.  I wonder if they'd ever done this before.

The river was frozen over.  We all piled into the yellow and wood paneled minivan.  Dad drove down to ferry landing, and out on to the ice, following the cleared paths.  He pulled off, and started shoveling until there was enough space for us to skate.

I'm assuming we had skates.  By then we should have had the box of old skates, worn many years earlier by my dad's law partner's now adult children.  But, we could have just been slip sliding in our snow boots.

I don't know what we were wearing, our how long we were out there.  Mom must have been a nervous wreck.

Years later, Dad would freeze over our side yard, and we'd get out the skates again.  There we bumps, but not too many, in the ice from where air had risen up from the yard below.  They looked like white knuckles trapped under the ice.

We would skate out there one day with my grandpa Fred.  Grandma was there too, with Aunt Nancy and Uncle Paul -- my grandpa's brother -- but they didn't skate.  I don't know if we skated out there just that day or 100 times, I just remember seeing my grandpa on skates and shuffling around our tiny rink with him.

A Very Motomed Christmas!

This summer, Amy, Walker and I went to the Abilities Expo.  It was something we used to go to when we were younger with Mom and Dad, and this year it was an opportunity to scope out styles of van conversions, see what other new technology was available for Amy, and work on getting our bearing in our new roles with Amy.

This is when we first laid eyes on the Reck Motomed.

It's an exercise bike that you can use on both your upper and lower extremeties from your wheelchair.  In addition to working like a regular exercise bike and providing resistance, it also does passive range of motion, which is what Amy needs -- it moves her.  Unlike other similar devices, the motomed has a feature where its computer can detect Amy's spasms and stop running when she is in the middle of a spasm, and start again when the spasms ceases, and the spasm threshold is adjustable. 

Amy gave it a whirl, and we were IN AWE.  I didn't realize Amy could move the way I was seeing. She said it felt great to get moving.  I want this, she told us.  I want to do that again. 

The price, however?  5-7 k.

I was glad it wasn't 10-14 k, but the price was still impossibly high, even if we got one used from the company.   I ran it by one of Amy's fabulous doctors, and he was all about it, but there was just no funding available, from Medicaid or from another source.

As with all things, I didn't let it go, and turned to searching craigslist nationally to make my dreams come true.  For five months, nothing. 

Then, a month ago there was a listing for a Reck Motomed Viva 2, outside of Phoenix, AZ.  A man had died -- a dad -- this family was selling his equipment.  It was at once so sad, and so lucky for us.  Against everything craigslist advises, we mailed a money order and arranged for a shipping company to pick it up.  The former caretaker of the man handling the transaction seemed geniune and was on linkedin, and searching the name of the deceased man, we came across his flickr account. 

I'm not going to go into what it cost.  I will say only that it cost more than my my first, second, or third cars, but friends will remember what my first, second, and third cars were like.  The shipping cost exceeded what we'd thought we'd be spending on two Christmases for Amy.  On the Friday before Christmas, the largest box ever was delivered to my aunt and uncles door.

Everyone opened their Christmas presents, and as the last present under the tree disappeared, Annie turned to Amy and said "Are you feeling left out?"

Walker stood in front of Amy as I rolled her present in.  "What do you think it is?" someone asked her.

"A bigger TV?"


Walker stepped out of the way.  Amy laid her eyes on the giant bow atop her dream machine and knew what it was immediately.

 Then the thrilled screaming began. 

Followed by an excited trial run (slightly hampered by some unfinished assembly, but joyful nonetheless).

Amy currently gets botox shots to help reduce her spasticity and the pain she experiences from being so tight.  We're not going to stop with the botox, but we it's a constant battle of waiting for insurance approval and long long laspses in between treatments that leave Amy all locked up.

Theoretically, using the motomed will help naturally reduce that tightness and spasticity.  More physical activity will also provide a way for Amy to blow off steam, to invest in herself, and to build strength.  With time, as Amy does build strength, she may even be able to use the exercise bike function and burn calories.

Our biggest hope --what makes this expenditure totally and completely sane -- is that a year from now, or even two years from now, that between using her motomed and her stander, that Amy will be able to do a standing transfer. 

A standing transfer would change Amy's life.  It would mean she could work more places and visit more places, because she'd be able to use the restroom without special lifting equipment.  It would mean that she could ride in cars.  It would mean that she was healthier and stronger.  It would mean that she is generally easier to provide care to.  Knowing that her needs can be met anywhere, and with less difficulty would give Amy security and peace of mind. 

STANDING TRANSFER in 2013!  That's my new battle cry.

Christmas Trees and Bitches

 Yesterday, Walker and I hit the road, drove the three hours to Amy, picked up our girl, and drove an hour and a half downtown in fierce traffic to meet up with family to see the big tree, which takes ya know, minutes, and then have a long and rowdy dinner in hidden BYOB Chinese restaurant.  It was great.  And the we drove Amy home, and then drove the three hours home for us, during which time my exhaustion started to show and I moaned and groaned crying out "NEVER AGAIN".  But it was nice, and I love my my family.

 

So, that's the Christmas tree part... Now for the bitches.

We'd emailed Amy's new QSP earlier in the week to let her know that Amy would be home late on Saturday.  All the way home from downtown, we tried to call Amy's house to let her caretaker know when we'd be home, but no answer.

We left, and then Meany Cold went to work on destroy Amy.

Thanks to Meany Cold, Amy's great day turned to horror.  She went to bed upset.  Woke up upset.  She's still upset.  And in a few hours, Meany Cold will be back in the house terrorizing her again. 

Hi, [New QSP},
I emailed earlier this week to let you know that Amy would home late on Saturday. 

When Amy got home last night, [Meany Cold] asked Amy why she got home so late and why she didn't call.  Amy tried to call the house, over an over, at least four times, starting at 10 pm to tell [Meany Cold] when she would be home.  She left two messages. 

[Meany Cold] told Amy "I'm not gonna work here very long if this crap keeps going on".  She also told Amy she was rude.  When Amy asked if her chair was plugged in, [Meany Cold] told her that had been, but that her sister had unplugged it, and she she wasn't going to plug it back in.  One, we had plugged it back it.  It came unplugged while we were taking pictures of the broken piece, then we plugged it back in.  If she found the chair unplugged, it's because the cord fell out when she passed through Amy's doorway, since the cord was across the doorway.  Two, it is completely inappropriate for her to set conditions for providing care to Amy.  These things were upsetting Amy, and [Meany Cold] told Amy she would leave her in her chair if she didn't calm down.  Amy tells me she was not having a panic attack or screaming at that moment, was just upset at how she was being treated. 

This has been going on a long time, and there has been no change.  This has to stop.  It is damaging to Amy and it is completely inappropriate for [Meany Cold] to act resentful towards Amy for having to do her job, or to threaten not to provide care to her.  Elmwood is Amy's home.  [Meany Cold] is an employee at Elmwood.  Amy should not feel insecure about her care in her home.

Please let us know how this will be addressed. 

I don't know if it's evident from the posts, but it's pretty much impossible to take this stuff in stride.  We want so much to rise above this stuff and work on fighting the bigger fight for Amy's rights and for her own fulfilling life, but we spend all our time trudging through this day to day crap.  

I can't even find the words to write here in this moment because I am so blinded the screaming rage inside my head right now.  Amy will keep calling me again and again and again, still upset about this.  The new QSP will never email be back.  Meany Cold will just keep being a monstrous bitch who shouldn't have access to vulnerable people.

This anger will give way to a feel of exhaustion, resentment, and disappointment with the straws Amy and I pulled in life, and feeling sad for my husband for getting bound up in all this, too.  I will then start to worry that this constant issue will destroy our relationship in the long run, and I will cry for fifty different things.  Then, either out of fury or blind optimism, I will rally and start trying for the best again.

And that's just me.  I'm an able-bodied adult with a job and good health.  I won't even get in to the full force of what this does to Amy, but in case you ever wondered, if you make a completely dependent person feel insecure about their care, you will make them insane and nervous, and they in turn, will drive you crazy by asking you again and again if you will or will not be providing each piece of the care they require, since they can no longer trust you for what they must have to live.  And if you act like you resent providing the care they need, the care that you don't need only by good luck and a wee bit more oxygen at birth, you will make them feel like shit.

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.

Día de los Muertos

Momma.  Biggie.  Phil.  Gram.  Gramps.  Daniel.  Lori.

I miss you all.  I love you all.  I do my best to remember you without feeling sad, and to keep you inside my heart, living with me.

Our Favorite Marine

 

I will rail against Target putting out Christmas stuff and calling the holiday season before Halloween, but our favorite Marine rules for getting a leg up on the coming gift giving season.  Main man's brother,  LCPL John Corydon W., currently deployed in Sangin, Afghanistan, asks that instead of sending him care packages this November, donate a toy or make a donation to your local Toys for Tots in his honor.   I love this guy.

Corydon writes:

"The mail system in Afghanistan is already slow to begin with, and the amount of mail it receives during the holidays triples. So I figure instead of sending packages that will sit on Camp Leatherneck, why not spend that money and care making sure that a child has a chance for a happy holiday season. I feel tremendously blessed that I have a family and friends that cares about me so much and about our country and communities. Thank you all for donating, and I will see you all next spring when I rotate home."

My mom.

My mom died on May 5. My whole world is upside down, everything is different. When my stepbrother died on November 8, I was able to find words to describe the horrible ache inside of me, but I'm not able to do that this time.

I might have to skip this whole section for now, and just start sharing our next steps of building our new life with my sisters, and with W's mom and my Aunt Jane, wife of my mom's only sibling.

Annie made this video for our mom's memorial service, held at her home nine days after she left this place. All week, mom's voice filled our home as Annie watched family video after family video, capturing bits of footage. One night we sat down and went through every family photo -- enough photos to fill a tightly packed Scion, not counting the 30,000 plus digital images. Annie is amazing. This is her tribute to our mom.


Kim Kelly Memorial Video from Anne Kelly on Vimeo.

Toot toot tootsie, don't cry.

Today, my Grandma Shirley turns 86.

It is hard to believe it's been five years in July since she hugged me.  It' hard to believe everything that's happened since then.

I used to call her on the phone in the evenings -- make small talk about dinner and what was on, if she'd talked to anyone else.  Evening were long for her without my Grandpa Fred.  I used to zone out during these calls, laying on my bed, and I'd be so disappointed in myself, telling myself I should really pay attention and appreciate my grandma and these chats, and really make real conversation, and I didn't always succeed.

I will never forget her shocked gasps, or the way her hand felt when she laid it on your knee or your hand -- almost petting you.  Her shouts when I rifled through her things, and how fun it was to go through her things.  Sitting on the foot of her bed with her and my mom, going through all the little boxes of jewelry, perfume, old photos, and broken watches.  I'll never be able to explain to my kids her and all the things about her and the specific details of her home and how it smelled and how it felt to be there -- things that are so real and vibrant in my mind.

I could not comprehend the sadness she felt after losing my grandpa.  And I know we were probably insensitive to that sometimes.  Maybe a lot.  But I hope she knew that was because we loved her SO MUCH.  We wanted her, so much.  We had lost grandpa.  And with him, we lost a piece of her, and it was unbearable sometimes.

Thank you, Gram.  For my mom, and for being such a good mom to my mom.  For all of your love and affection, for always being welcoming and accepting.

I love you.  I miss you all the time, but feel you right here with me all the time.  I'll never love anyone else the way I love you. 

Sweaty and sentimental.

A chilly winter outdoor run leaves me with sweaty cold fleece that reminds me of my youth of day after day, winter after winter, first skiing, then snowboarding.

I miss that.  I miss scoping out the reduced lift ticket days and skiing with my dad.  I miss the excitement of the ski swap, and the first time I got a season pass -- and so did my best friend.  I miss the hours and hours spent riding chair lifts, trying to chose the shortest lift line, trying to catch up with friends, meeting kids who didn't go to your school.  I miss the excitement of getting out of school and plotting whose mom would drive out to Chestnut, the car slowly making its way up the last hill that stood between us and the resort, and late night pick ups, not coming in till ten minutes AFTER you were told to be ready for pick up, and hoping as you came up the lift and you could see the ski patrol standing there that they would say "last run" and not "goodnight", and then riding alone in the car with dad sometimes stopping to pick up a gallon of milk and getting a treat, too, and coming home to a house where everything was winding down and there were leftovers in the fridge. 

Big Baby.

Niece number four is now three months old!  She's doubled in size, and is still the tiniest, most adorable baby ever, but suddenly with so much more movement and expression.  She's making me work harder to get sharp photos.

Lexi, you are a gift.  Your sweet smile and spirit are easy to get wrapped up in.  They bring something new to family time -- something new and glorious.  You are the flip side to the sadness we all feel.  The only way to go is forward, and you are making sure of that.

Your sister adores you, and it's fun for me to see how I must have felt when Annie was born.  You are the greatest thing in the world to her.  Unfortunately, from her point of view, other people see that too, and it cuts in on her attention.  Your eyes are huge and wide when  we play patty cake with you facing her.  Of course, there are no photos, because we were playing on what I think of as the "low light couch".

You make me understand having kids.  You are the flip side to the sadness.  We are mortal, and it is the saddest thing.  I miss the family that no longer surrounds me in the flesh -- grandparents, Phil, Biggie -- but there will be more family, more happiness.  

At Your Funeral.

I was just shoving the garbage bag material poncho that Annie wore to your funeral back into its little ziplock bag.  It came from an Eddie Bauer survival kit we each got for Christmas many years ago, I think from Scarlett.  A whistle, waterproof matches, a fake maglite, a compass, an emergency blanket, and a poncho, a very minimal first aid kit, all inside a lexan bottle, during the Nalgene craze.

I long ago dumped the contents of the two bottles into our car bag -- the tool bag Dad gave me years back (I know you were there) that holds the things I might wish I had with me in a pinch, or if something terrible happened.  Utility gloves, scissors, duct tape, toilet paper, bungee cords, twine, jumper cables, etc.

The car bag hasn't been in the car lately, since we helped our friends move its been sitting in the dining room.  In October, it let us down when we found it no longer held jumper cables.  But it was there for your funeral.  The only part of us prepared for that day.  Emergency poncho.  Check. 

Your funeral was nice but went by way too fast.  I could have stood to be held in that spot in time for much longer, because I hate moving forward on this and farther away from the world that included you, alive, and me, with a step-brother.

At the funeral, one of your friends carried an umbrella decorated around the edge with coffins, I think with crosses.   Your grandma wore my favorite coat of hers, I think.  I could be completely mistaken, but in my mind she was in that long wool sweater coat of hers. Your friends were getting pummeled with rain, it rolling down the collars of leather jackets.  Punk rocker coats tend not to have hoods, though one guy had a black REI shell on.  I smiled to myself thinking about the coat I'd bought you, the Dickies coat with a water resistant coating.  It was a style my mom would call "gas station attendant" but I loved it.  I wondered if you ever wore it.  Then I saw you wearing it in so many of the photos that were posted in your passing.  When I was going to order it, Dad said, it does have a hood.  I argued you'd never wear a hood anyway, not up at least, it would totally mess with your hair and not work with a hat.  Joe told me you once told him I have a raincoat, but it doesn't have a hood.  That's why.  I chose the one I thought you'd wear.  Even though it was oddly without a hood. 

Dad put you in the ground himself, kneeling, straining to lower your box to its place on top of your grandpa.  Someone was holding an umbrella over his head, and the rain was rolling off it onto Dad's back.  

Dad had us each take a flower from your arrangements.  Mine is still sitting on the dash of our car.  It's a little contrived at this point.  I think I've cleaned the car since that day, or maybe it was the day before the funeral that I cleaned the car.  It is a red sunflower, the dyed kind.  I'd thought about having them at our wedding, but the color looked so dull.  But not these, they were bright red, the perfect shade of red.  They were the kind of flowers you might have chosen, but for your wedding. 

At your wake there was a guy sitting in the back, alone, apart from your other friends it seemed, with dark hair and glasses.  I don't know who he is, but I think of him often because it helps to know there are other people thinking of you every day, other people who know how much the world has changed.

A year and a day ago.

Amy, her growing posse of men, and a lot of joy.

A photo.

Gone again.

Biggie, I just remembered what's happened.  I'd been neck deep in homework for hours and suddenly I realized that the fact that you are gone wasn't sitting there on the front of my brain ready to explode.  And like that, I realized you were gone all over again, and I just want to hug you and apologize, for what's happened, and then I could see past it for even a little while.  I love you.

I'm so sorry this happened, and I'm so sorry for these embarrassing, creepy letters.  I'd much rather be eating ice cream with you at the bar in kitchen in the swivel chairs, late late late at night with the tv on, and birds covered and making their nighttime noises to themselves.  I wish I'd stayed up more and hung out with you instead of saying "no, dude.  I have to go to sleep.  I have to go to work."

I know a lot of the times I stayed with you guys were not my happiest times, and that I was so overcome with whatever that I wasn't taking advantage of or enjoying what I had around me.  I remember how sweet you were to me, when I was a mess.  Thank you.

I'm probably supposed to learn a lesson from that now, and not sit here late at night crying at a computer monitor writing messages to you when I could be appreciating my warm bed, and my husband, and my life.  Or maybe right now, it's ok if I just sit and appreciate how much my heart can ache.

And I'm also scared.  I'm scared how you could be gone in an instant, and how I could be gone in an instant.  How anyone could just be gone from this world we share.  And it is the scariest, and the saddest thing to me. 

Ok.  I'm going to blow my nose, and go to bed.  And make light of this by saying, Biggie, if you want me to wallow for you, by all means, give me a sign -- I'll be happy to oblige.  Love ya, faux bro.

Running for Biggie

On Thanksgiving morning, we rose bright and early, and before we peeled potatoes or crushed pecans, we pulled on our running shoes, drove to Mount Prospect and ran the Turkey Trot, in honor of our beloved Biggie.  Mom and Amy battled the rain to cheer us on.

The last few weeks I have felt powerless, to say the least. The week leading up to the funeral was intense, but in a way, also enjoyable, because it felt like it prolonged our time with Biggie. The pain was searing, but most of the time, my brain couldn't even process what had happened. And then before I knew it, we were singing, then I was giving a reading, then standing in the rain, then eating pizza. And then, it was over.

The next week was overwhelming. I was filled with despair, and deep, deep sadness, for myself, for my family, and most of all for Biggie. I wanted to be with Dad and Deb. The rest of the world, even my own home, felt so distant from the new reality. I wanted to undo things, whatever it took. I sat at my computer, in the class I was in when I got the call, and it seemed so unfathomable that that had really happened, and seemed so near that it felt like it should easily be undone.

Then next week the clouds began to clear. The pain and sadness were just as searing, but I started to feel like me again. And I found sadness in that, too. I wanted to stay crushed to the ground, to be unable to rally, overcome for another day. I don't want him farther away.

At this point, I've seen most of my coworkers, friends and family who know what has happened, and already faced their kind words and cringing faces. Now a lot of them want to proceed like we live in the same world we did three weeks ago, whereas my heart wants to start every conversation with "He is still gone. He was cheated, and we are all cheated, but not as much as he is cheated" and silence all conversations, my own included with "You are alive. Suck it up, get over it. Time to live."

Other people don't know what has happened, and I don't know if its appropriate to tell them. It does not matter to them, but it hurts not to say hey, do you know what we've all lost?  When people ask me how I am, I wrack my brain as to whether they know and are really asking, or if they mean it just in passing.

I feel like a drama queen. I know my pain is nothing compared to his mom's, our dad's, his sisters', his friends'. But this is who I am. I am so sad for him, and mourn the loss of the Biggie I knew and the Biggie I was to come to know over the next four or five or six decades.

So what do you do in this situation? I have to go to work, I need to finish school, I've got stuff on my plate. I want to lie in bed wailing in honor of him, but what a waste; good for no one. So, on Thanksgiving morning, we donned our newly made t-shirts -- rip offs of a Sex Pistols single cover -- and ran in honor of Biggie. My heart pounded in my chest for that time not with sadness, but with exertion and life. I thought about Biggie; I engaged in an activity with my sisters.

In the past I did not understand doing this or that in memory of a person, but I get it now. There's not much you can do in a situation like this.  This is something you CAN do, and all I want, so desperately, is do something, anything, that keeps him here and remembered, and pulls people closer, in any way.

No crying to Bad Religion.

Well, Biggie, today was a better day.  I was just driven to write this sentimental post as I lay here on the couch surrounded by your cd's listening to the new Bad Religion, but now Walker has swapped that disc out for Gwar.  Damn dude.  Not to pass judgment, but you have a lot of Gwar.

For the last two days, I've been aching to be with Dad and your mom, to drive and take a visit, and to be with them.  Our house feels for far away from you, and the fam, and from everything that has happened.  I'm ok, just not ok so far away and disconnected.  I don't relate to people I usually have so much in common with.

I drove up today.  It was exactly where I needed to be.  They miss you so much.  I miss you so much, and I hurt for you. I didn't see you a lot lately, but I just assumed you'd be around forever. 

I'm at my mom's now, listening to Rancid, totally mesmerized by your CD collection.  Walker is going to hurt himself with your nunchucks.  I know you are not in your things, but is joyful to be around your things, and the little bits of extra knowing you that can I squeeze from this world.

I have a feeling our family is going to grow closer through this.  And that I'm going to learn a lot of new music.  And that's great, I just really wish that you'd be there for it. 

I have so much in my heart, and so much to say, but when it comes out it's just these very simple worlds on a page.  I'm so sorry, Biggie.  You deserve more of this life. 

And yeah, I usually think blog posts talking to the deceased are pretty creepy, too, but it sure does feel good.  I won't do it too much.

For Biggie

I'm not a religious lady, Biggie, and you know it.  But I'll see you again.  In my dreams, in my imagination, in my heart, in your nieces, in your future nieces and nephews.