Happy Easter

What a different Easter this one is.

Last year I had Robert and Mom for here for Easter. I remember trying to find things that Mom would want to eat (picky eater) and listening to her remember back when we colored dozens of eggs for the kids to hide ... Easters on the farm, Easters back in Newkirk.

This year it's just Jon and myself. This is my first holiday without Mom. Yes that sounds strange but Mom never had husbands -- or inlaws -- for very long so holidays revolved around making her feel welcome and not alone. Especially as an adult, holidays were held at my house and yes Mom was always in attendence.

Jon did suggest going out to eat but I need to see who/what I am when I'm not tayloring holiday meals around someone who doesn't like pasta, doesn't like scalopped potatoes, doesn't like ham . This year for Easter it's ham, macaroni and cheese (homemade thankyouverymuch), green beans, salad, and carrot cake and to be very strange, part of this morning will be spent at the gym.

OK so it's different - yes I realize that - but it *is* a start.

**the picutre was taken last year @ Easter and you'll notice we had a bit of a snowstorm. This year it's forecasted for flurries but I don't see that happening ......

Guilt

Mother has been in the hospital the last few days -- near to a week in fact. Again, bad choices made in her youth, unwise choices made as an adult, and other contributory factors are involved. The choices we may have to make aren't easy ones.

So why are Jon and I having guiltful pleasures? Simply put, it's a rare moment when I've not had someone dependent upon me. In fact, in my entire adult life, I've nearly always had someone dependent upon me for one thing or the other. First it was Robert, then Montana, and now Mother.

I try to devise menus that incorporate foods she will deign to eat though she usually won't. We adjust our eating times for the optimal time for her to eat (again even though she usually won't). We adjust our lives around Mom's schedule.

This weekend Jon and I cooked what we chose, ate late, lingered at the table talking .....

...ahhh here comes the guilt.

Yes I know it's not being perfectly horrid to enjoy a day or two free of the mantle of caring for someone who is - quite frankly - a real bear to care for. Make her mad and you'll dance to her tune for literally weeks until her tissy fit subsides. Let her get bored and she'll call either her doctor or the ambulance. She's very sad and it takes come rather creative contortions to keep her happy and in some semblence of health. Sadly this has been my responsibility since birth and this responsibility will not cease until she breathes her last. It's a heavy weight but one I'm quite used to. I've over 40 years experience ....

So - to breathe a sigh of relief as the weight is passed -- if even for a fleeting moment -- to another. Guilt? yes. The guilt comes in waves. If she doesn't come home the guilt will be far worse I fear.

For now I breathe. For today I relax ... because I've no idea what tomorrow will bring.

**the picture above is of the February snow of 2006. They're predicting snow for today and I'm already dreading the drive to the hospital tonite.

The most melancholy time of the year?

Yes the changes in familial situations is finally hitting me this year. Each year prior we tried to figure out how to juggle visiting and the kids (even when they're adults they're still kids) and Mom and this year we literally have no agenda - no need to juggle. It will be just Jon, Mom, and myself. For any gifts we will probably do online and mail (ever so much easier) or $$$ (Robert's rather logical request).

The holidays have always been about family from the first time I spend Thanksgiving eve with Grandma doing the prep for the next day to even last year when I planned around a neighbor and son + girlfriend. It has always been controlled chaos. This year it appears to be organized.

That is probably the most unnerving aspect - Thanksgiving will be organized.

The shopping was disorganized though ... I guess that's a plus? heh

the photo above was taken autumn 2006 at the Maryland Renaissance Festival

On this date

On this date last year I was still numb from the call 2 days before telling me my best friend Deb (who was also my cousin) had unexpectedly died.

On this date last year I was still emotionally rocked from discovering 2 days before that my father had died in April and no one thought to inform me.

On this date last year I apologized to my son Robert because his birthday was wrecked again by deaths in the family. It happens frequently. He was still pretty upset over Dad and Debbie.

On this date last year we were informed that Jon's mother was not long for this earth. She passed six days later.

---I send a fervent prayer that this November is kinder. I doubt I could take another one like last year. October this year was nearly bad enough to send me to a shrink begging any drugs to make it all just go away.

the photo above was taken at Calvert Cliffs summer 2007

In search of Zen ....

...or at the very least some form of balance.

I said before that my anchor was gone. That's not entirely correct - I seem to always have an anchor. Maybe I'm self-anchoring? It's more like my 'balance' has been disturbed (for lack of a better term). In a strange way to visualize it, picture if someone reached into your aura and just gave it a quick stir. The colors aren't balanced; the energy is off.

Someone mentioned "I wonder which gods YOU pissed off". That led to a rather lively discussion with Jon about the fact that mine and his have both developed a sense of the macabe - perchance there's a 3rd? Harold was pleased at that thought.

Perhaps though ... just possibly ... this is a cue to re-embrace my (our?) spirituality. It gets interesting however since we're in a mixed marriage - Wiccan/Christian (I'll let you figure out which one is which) but we also support each others individual beliefs so it works.

To quote a rather more famous muse: "...it doesn't matter what you have faith in, just that you have faith." Serendipity//Dogma I like that.

----a quick note about this blog: this one is mostly for me. As such it won't make much sense ... anymore sense in fact than it's name which yes Harold chose.

An unusual state of mind

Or should that be an unusual state of mine?

I all but closed my main blog on 360. I felt I needed to focus my attention and time on Jon. Also, I found it quite difficult to blog to readers about anything when the thing in the forefront of my mind still is his condition and how we're coping.

I still cry when I talk about it.

...but I digress.

Anyway, I got a few unhappy people after I removed all but 13 (including my alternate) from my friends list and locked my blog and quickies to friends only. I did that so that when Jon is comfortable talking about what is wrong (if ever) I will have that blog for moral support as it were.


I know there will be a parallel drawn for many but to me it's not the same. Either way that is the way it is pretty much. Mine is a choice for a different reason: currently that diagnosis affects literally everything I think about. I am a plan for the future kinda gal. I'm finding myself rethinking EVERYTHING.

I hope this too passes with time.

I hope the driving desire to go to ground like a small wounded animal also passes with time.

I hope one day the tears pass.

I hope one day the tears cease because I've come to grips with this - not because there are literally no more tears left to shed.

Johnny Depp at 2:30 in the blessed a.m.?

ok anytime is a good time for Johnny Depp *weg*

So you might ask what I'm doing awake at 2:30 in the a.m. - drinking beer and eating pizza - watching Johnny Depp - the same 2:30 in the blessed a.m. that is the 2nd to the last day of faire - the same faire I look forward to each and every year.

You could ask.

It would appear that as soon as my husband left Mom alone for a moment yesterday, she ran and called her physician to schedule an emergency doctors appointment. Was it for yesterday? oh nay nay

For today. At 9 a.m.

Her prescriptions are scheduled to be picked up @ 5 p.m. Yesterday? nay nay

Today.

Saturday.

The 2nd to the last day of MDRF - the last WEEKEND of MDRF.

I set and look at my bodice knowing it won't be worn. I look at the DOW dress I borrowed knowing more than likely it will not be worn either.

I bemoan the fact that pictures weren't taken this year.

I know that each day, each month, each moment that passes, Jon's condition worsens. I wonder what will happen if this *was* his last year at faire?

I wonder how I will forgive the self-important drama queen if she's robbed me of a last season with my husband. She has currently kabashed any out of town trips and vacations. She has dictated - by her actions - where we dare to go and when we dare not. We have missed many days this season.

I only hope - for her sake - that there are many more seasons ahead.

Each day is a gift. Each day should be lived - not served.

I am currently serving - not living.

at least Johnny Depp is still cute

Can't sleep clowns will eat me

Ok so maybe not the clowns but sleep? Please.

This will sound judgemental, harsh, and unbelievably childish. All I can say to the critics is you've not lived my life with this person - I HAVE.

Mother.

One of my earliest memories is she teaching me to pull the stool up to the hanging wall phone (rotary back then) and telling me to dial 0 for the operator if I came home and found her asleep on the floor with a bottle of pills or if she was in bed and I could not wake her up.

Judging from the fact I couldn't read yet it's a safe guess I was around 3 give or take. This wasn't the first time. I was taught to drive for when she had a 'spell' and would pass out behind the wheel. I was 9.

My life has been to serve her needs when she needs and be absent (but available) when not. She currently lives with my husband and myself because she sold her house and had previously lived with HER parents but her mother died and her father in essence kicked her out in favor of an assisted care living situation.

So - she moves out with me. It wasn't going badly until this year. Ok we had the typical fussy high maintenance stuff that goes with life with Ma - the competition with the children - the drama over her long distance phone relationship with her first husband (a blog for another time) - the normal stuff with her.

This year, however, she upped the ante a bit. On Friday the 5th of October she came downstairs (quite agiley I might add - that comes into play later) and said "Steph (side note - the winds ne'er blow well when she calls me steph - it's either to insult or to dramatize) we have a problem. I had a stroke Wednesday night". OK I'm thinking "really?". Then she baldly states: "oh damn you're going to miss faire [MDRF]". I'm thinking ahhhhhh so THIS is where this is going. Anyway so I talk to her for a bit while I attempt to get ready for work and tell her to call her doctor. At 9 a.m. she calls me to tell me she called an ambulance. Seems as though when she called her doctor HE was under the impression she lived alone. Charming. OK so yes she had at some point had a light stroke (possibly) and was admitted for 5 days (until Tuesday the 9th) because she 'wobbled' for Physical Therapy (as she told me - "I wobbled for them just a bit") and insisted on self-medication (never a popular thing with hospitals.

--side note #2 - I had scheduled oral surgery for myself for the 24-26 of October. It had been scheduled since way back in September.

So she's now out of the hospital and charmingly has scheduled her tests and physicians appointments for - yep you guessed it - October 24, 25, and 26th. OK so I saw that coming and we've worked around it.

Monday October 15th. "Steph - we got another problem. My tooth is broke and hurts. Its EXCRUCIATING." OK so I schedule an emergency dental appointment for her for that Monday. She has such a fit in the office that they refuse to touch her (telling various people she'd just had a stroke and could barely walk, her blood pressure was 'high erratic' and her doctor knew another stroke was on the horizon yadda yadda yadda). So they schedule her for the oral surgeon the next day. At this point she has thrown herself from the chair, is on the floor on her knees, and screaming. I'm nonplussed what to do. I pick her up, pay the dental fees, and take her home fussing all the way. Anyway on Tuesday the tooth is extracted and she has pain meds etc sent home with her.

More nights no sleep.

Fast forward to today: "Steph we have a problem". *sigh* "My first BM since the surgery [she meant tooth extraction but ok] and it's black and sticky. Those antibiotics are making my stomach hemmorage I just know they are." *sigh* I read it in my book they would do that. *sigh* I give her the standard schpiel - call your doctor yadda yadda yadda. She tells me "Well now I know it's the last weekend so I WANT you to go to faire ... even if I am in the hospital ... even if they do SURGERY ... EVEN IF I'M IN ICU. Oh and you HAVE to have your dentist appointment on Wednesday. Well you just do that and don't worry about me."

Anyone else see where this is going?

So now it's 6:35 a.m. = I came in extra early because I know I will be going home to rush her to somewhere where she will laugh and entertain or possibly scream and cry and tell people 'Good Old Steph' without a thought of anything or anyone.

Sound childish? Sound like I"m mean? No it just sounds like Life With Ma.

Little did I realize

Yes ok I'm a bit oblivious at times. Everyone who knows me knows that. I can remember something so delightfully obscure that people questions its veriest existance and I can totally miss the most obvious of nuances.

Call it a gift.

Little did I realize when *something* - one of those somethings that I always listen to and invaribly regret when I do not - when that same something told me "keep blogger private" that it was speaking for a very important reason.

I'm now glad I listened. One day I might give this address out. I figure if people find me its for a reason. If not then maybe this will avoid some therapy bills eh?

*******

Yeah end of segue

*******

I will thenceforth (is that even a word? Please Stephanie) use this blog for the very things I need to get out but cannot due to privacy issues. Job. Family.

Jon.

Parkinsons.

It still gives me chills and brings tears to my eyes to write both of those words on the same page.

Jon. Parkinsons.

The symptoms were there but the very obliviousness that I think helped me survive my childhood sadly enabled me to ignore the most commonplace things: he had a tremor and stiffness both. Parkinsons. He got tired and shook more. Parkinsons. Difficulty swallowing. Parkinsons. Difficulty walking and balance.

Parkinsons.

The most obnoxious facet of this disease is you can't diagnose it. It's basically what's wrong when everything else has been ruled out. Well it's not a brain tumor, it's not a stroke, it's not Bells Palsy, it's not Dropsy or epilepsy or anything else so it's Parkinsons.

Part of me is so very angry because I actually *did* think this is what it was so many times. However we didn't plan quite right and got a diagnosis without getting life insurance first (can't now) or long term care insurance (nope to that one too) -- in essence it's like this disease has turned my life upside down without even asking me - and I'm not even the one afflicted.

OK yes that's childish and in truth I *am* going through the stages of grief (it appears I'm at anger at this point) even though he's still quite alive and will be (god willing) for a loooong time.

I am simply mourning my dreams.

Dreams of *us*

Dreams of old age and rocking chairs and peace instead of dreams as once again I will become a caregiver except it will be to one of the most important people in my life.

What if I don't have the patience?

What if I don't still have the skills?

What if I just can't?


The hardest part is I *need* to talk but he's not ready to. Not yet.

So I wait. And write. And watch.

A silent vigil begins, begging to rally against the fates when it's just one of those things that just happens.

One of those things that I just can't fix.