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Wednesday, October 17, 2012


The pain of watching the life flow out of some one I love so thoroughly, intensely and completely is not something I'm capable of describing adequately.  I keep remembering a line written by a male writer I really respect who's name escapes me now, the line goes something along the lines of "amplified to a scream."  The pain I'm feeling is amplified to a scream.

I dug out my Mary Oliver poetry book today.  I thought it would be nice to read these poems to my mother in moments of relative calm.  Now's the time when I just want to sit beside her, hold her hand and cherish each moment I can look at her and see her still breath.

A heart with an arrow is drawn at the top and bottom of the note.  I've no idea when it was written but there's no disputing that it's her handwriting.

hope these eye drops help.  If they do and ou need more, let me know.
Sorry it's only half-full (beside this line there is also another drawing of another heart and inside it reads (I Love Lisa) but if they work, that should sustain you until I get more--

I have never been able to properly describe her in writing.  I have very little notes or remnants of our relationship.  I only have what lives inside me and that does not seem like enough.

Thank you Patty.  Your good wishes and comments have meant more to me than you could ever know.

Sunday, October 14, 2012

Sunny Sunday

Today was a great day.  It was a beautiful, sunny, unseasonably warm day.  The sky burned a beautiful, almost terrifying blue.

It is a calm time.  My mother is in a rehabilitation facility, trying to get some strength back.  I don't know that she'll ever walk without the aid of walker again.  I still don't know how she went from being on her own to being completely immobilized in the space of a week but I guess that's cancer or chemo or something for you.

Whenever I visit my mother during the week, the case manager and the social worker appear to tell me my mother might be released any day to do insurance issues.  But today was Sunday so there was none of that.  I have a minor plan for when she is released but I have yet to even talk to any of the players.  It's hard to tell exactly how much care Mom will need when she gets out because her progress is different every day.  What I do know is that home health aids aren't covered by her insurance so once she gets out, whatever she needs will require a big burst of cash.

Today she was calm, responsive, rested, happy.  She is feeling stronger and the overwhelming sadness she faced when the doctor decided to suspend any treatment, probably for good, fell to the background.  We spoke of the girls, their new bunk beds, the cute guy at work that I now have a crush on, C and his new young girlfriend.  She sat up the entire time I was there, a first for this month of October.

She asked if I could put the leg rests on her wheelchair and wheel her around.  The old me, the me of only a few weeks ago really, wouldn't have tried.  But I staired at the leg rests and the pegs on the sides of the chairs and I figured it out.  And off we went, on a beautiful day, down the hall, into the elevator, and out the automatic doors to a beautiful day.

Trees surrounded us with the view of a manicured U shaped lawn and several flag posts.  I didn't know how to put the break on the wheelchair and fearing accidentally releasing my mother into the parking lot, I sat beside her, holding the handles of the wheelchair.  I could hear the traffic from Route 38, just on the other side of the trees.  As a teenager, I often walked down the street this facility was on on my way to football games.  I think it was mostly undeveloped land, maybe a few historic houses that had been leveled to make way for this facility for the old, the sick, the newly rehabilitated.  I pointed to the trees in various directions, telling where the bank was, the eye doctor center that was once a florist.  We once lived not far from this facility, in a house she and I shared with my brother, a home from another lifetime ago.

She was happy and so was I.  I will remember this simple moment for the rest of my life.

Once inside, I steered her back into her room with a good view of her TV.  I had to go, time to grocery shop and return to my world with my girls, my world outside the prison she now faces, this prison of poor health.  I am so lucky to have this time with my mother.  I am grateful for every day, every moment, every time I have ever been able to call her and have her pick up the other end.

I don't know how scary the road ahead of us is but I have today.  I will always have it.  I will always love her, maybe more than anyone.  Maybe even more than my own daughters.  She has always been the only person who was ever really and truly mine.

Sunday, October 7, 2012

My Mama

Today was the day of the walk for Autism Research my mother and I usually attend with Billy.  Last year was a beautiful, sun drenched day.  My mom looked strong and proud as she put on her Team Billy T shirt and posed for a few photos with our tiny team.

What a difference a year makes.  I am grateful for this year I've had with her.  I'm grateful for every day.  I am thankful for today, for yesterday, for the day before.  My heart is full and heavy at the same time.

Yesterday, at the hospital, I sat in the only chair in my mom's tiny room.  Eliza found her way onto my lap for a snuggle and soon after, Elena came up attempting to pull Eliza off my lap.  As the girls fought over who got to sit in Mama's lap, my own mother, clearly disoriented, uncomfortable and in pain, said "Hey girls, I have an idea.  When you go home tonight, go into the playroom and start picking up toys. And whoever picks up the most toys gets to sit on Mama's lap."

As Eliza got dramatic, saying "mama doesn't love me, she loves Elena better than me," my mom corrected firmly, telling Eliza that I feed her, I wash her clothes, I take her to school, I take her to dance class so "How can you say she doesn't love you."

My mama, my champion, my love.

I wrote something nice for her on Facebook, something everyone could see but now I can't remember it.  My mother fought for her autistic son and talked her way into a career as a reporter in a time when women didn't work so much by walking into buildings and saying "I want to work."  She is my hero, my best friend and one of the great loves of my life.

I think I said it better on facebook but you get my gist.  I love my mama, and she loves me.  I love my mama and she loves me.

I love my mama and she's sick and leaving me.

Saturday, October 6, 2012

But I have to

So my Mom was fine and now she's not.  Tonight, I wept so loudly with such force, Eliza covered her ears.  I probably scared her.  As her mother, I should try to control myself, to not let her see me like this.  But I couldn't hold it in and I'm not sure I can.  I know I am their mother and part of the mother manual reads something like "don't scare the heck out of your kids with voluminous, athletic weeping."

Eliza told me I cried louder than Elena which means I cried pretty damned loudly.

I took mom to the hospital a week ago after finding her too weak to take care of herself.  I'd been there exactly a week earlier and though she was actively complaining about hemorrhoid pain, she seemed otherwise okay.  I returned to work during the week and she was fine on Tuesday when I spoke to her. By Thursday, she could barely speak.  On Friday, I seriously wondered if I should leave work to take her to the hospital.  Sending over a neighbor, I toughed out the day and prepared for the worst on Saturday.  The fact that she went to the hospital without a fight shows how badly she felt.

Feeling somewhat secure by the fact that she was in the hospital I returned to work.  But as the week wore on, all kind of insanity took flight.  She couldn't speak directly so various nurses and doctor workers fielded my phone calls.  I extracted as much information as I could, a lot of clinical, a lot of in downright untrue.  By Friday, when I finally made it back to the hospital, I practically ran down the long, sun drenched corridor to her room.

I found her high on Percoset, happy, and seemingly much improved from how I'd left her.  Things are not great, but she looked better and that gave me hope.  But there was no sign that she could get out of bed on her own.  We are on that point now where she can't take care of herself.  So here we are.

Today didn't start out as a bad day.  When I called the hospital, they told me physical therapy was there and they hoped to release her to a rehab facility.  I think the plan is to try to get her stronger so she can go home with the aid of palliative care and, gulp, hospice.  I cried upon hearing the H word, but seeing her smile yesterday buoyed me tremendously.  A few hours later, the hospital called to ask me if I could take her to rehab and her insurance would not cover transport.  I loaded up the girls and off we went.

Things did not go well from this point forward.  Nothing awful happened but let's just say my mother was in a far worse state than she had been yesterday.  My hopes were crushed.  On top of her sorry demeanor and dazed, terrified expression, there was snag that prevented her release for a few hours.  The girls, as always, handled the time at the hospital well but it was stressful.  Finally she was released but she moaned in pain for much of our ride to the rehab place.  Upon our arrival, I found her completely incapable of getting out of the car on her own.  When a woman showed up with a wheelchair, my mother still could not get out of the car.   The attendant didn't know how to help and sent for a large male orderly who took what felt like an eternity to arrive on the scene.  My girls amused themselves by rushing in and out of the automatic doors, an activity I knew I should suppress but somehow couldn't.  It took everything out of me to keep it together as I watched my mother wait for the attendant, completely incapable of doing something she'd done when I dropped her at the hospital a week ago.

After finally getting her settled in her new room, my girls desperate for dinner, I took off.  I headed home and chose to park in the back lot behind my building as it's safer to park there on weekends.  Well not this weekend because my neighbor chose today to back right into my car door.  It was an accident, she felt terrible but then I lost it, crying in my car.  Everyone was okay, the car will be fixed, it is yet another thing to add to my to do list.

But there it is, some pretty bad timing.  I can't shake the sound of my mother's moaning.  Or the way Eliza clung to her at the hospital last night.  When I cried, big shaking, earthquake causing sobs tonight, I just said the same thing over and over again.

I want my mother.

In the car on the way over on the radio

I can't breath without you, but I have to.