A small request... please

I have a small request and it won't take up much of your time.

Now that Emmah's spirit has left her physical body behind and has completed it's journey "home" I would very much like if you could all take a moment and reflect on Emmah... whether you knew her personally or not. Let us know how she touched/affected or made a difference in your life.

I especially would like to hear from those of you who know/knew her, what your fondest memory or memories of her are. Funny stories and what you remember her likes and dislikes to be (no matter what they are) and what word/words you would use to describe her.

In order to keep all of those thoughts in one place, please, please use this link only for this purpose only.

Thank-you

KEIYH

26 March, 2014

Up in smoke...



It's interesting, for reasons unknown to me, I quite honestly feel the need to write. The mood does strike often and I can usually get the opening done in my head. Then the direction/thought disappears... much like the smoke from an extinguished match. Out goes the flame and you’re left to watch the smoke swirl and twist upwards and right before your very eyes (or in my case eye) it just disappears from view… literally vanishing. 

Poof! 

The physical make up, least that of what’s visible, of smoke is interesting. It can be controlled (smoke rings) and made to “flow” with little to no effort, while at the same time it can hang suspended just waiting to be acted upon.

Sorry, a bit of digression… I am prone to them.

Of course how would you know…? You’d have to be clairvoyant to know if I was digressing.

Now to be fair, I've been to this fiesta many a time and on the odd occasion I do sit down and go through the motions (opening the laptop and so on) and actually put fingers to keyboard, I tap away the opening with a great mental eagerness. Hoping that the next line will form before completing the one presently being typed… only to have my fingers sit poised on the keys saying, “Well…?” awaiting some mental output to wander on down to them.

The keyboard/computer then just sits there mockingly waiting to be acted upon. I end up staring at the “page” that I've tapped out a handful of words, scanning them over, only to have it sit there blankly staring back… cursor (in mocking cahoots with the computer) ceaselessly blinking, almost in time with the seconds, counting out the time I'm wasting stymiedly staring at it. I read it over and over trying to jump-start my thought process or force my way around the blockade that has formed. Most often it’s the delete key and a closing of the lid.

Sometimes it is different… sometimes things actually go somewhere. Whether it’s a direction that you (the reader) want to go is only known well… by you… the reader. Ironically the thing I don’t know is when that special sometime will strike. Not until I go through opening the computer and putting fingers to keys is it exposed or known. It is because of that unknown, I often take a pass at the attempt.

I am not a reader, which is to say I could read, but don’t derive any type of pleasure from it. I can take it or leave it… mostly leaving it. So then why do I write, or want to write? One can plainly see it’s been over a year since I've posted anything. I don’t know… feel like I have something to say? When push comes to shove though, to the “masses” it’s pretty pedestrian. So it stands as a pretty good question; why do I write or why do I want to write? It’s never anything earth shattering. All those writings stopped a little over four years ago when the shattering subject matter ended and I (we) were left to pick up the pieces of lives now shattered. Not to sound too terribly redundant, but that’s when we all became broken. 

See when Emmah was sick and in the hospital I had something to write about… and I did. It was a way to document and a way to keep everyone up to date on the latest goings on. I suspect in some way it was cathartic. I hated the subject matter, but it came easy… now not so much…I’m broken and if I talked about what is going on in the Gudeman house today, it’s much the same that was going on then. Nothing seemingly has changed; we’re just all a little older.

{Talk about timing… I’m listening to music as I write and as I typed out that last line nothing seemingly has changed the song by the Talking Heads… Once In A Lifetime was playing and as I typed out that line, the line from the song that was playing… “same as it ever was”… much like our lives.}

Except with one glaring exception…

My writing has taken on a collective disjointedness…  I've written a time or two (in one form or another) that Emmah is missing from our physical lives… that is the core of the problem. I kind of get tired of writing about it and you my readers (imaginary or otherwise) must get tired of reading/hearing it. Yeah, yeah, yeah… we've heard this before, can’t you write about anything else? Seems that I can’t, least not without some type of an interjection and I won’t apologize for that either, nor do I expect that my (imaginary) following would require one. I have other children, my life continues… what to do.

I ponder a lot… well maybe not a lot, but I do ponder with regularity and let’s just leave it at that. During one of my pondering sessions something came to me the other day.

Caution… digression to follow. In our house the phrase “the other day” is used by Julie to often mean the day before the current one, in other words, I argue (take the position) that the day previous to the current one has a word for it… that word is yesterday. Julie’s retort is that “the other day” works. Technically I know she is right, additionally I know I am splitting hairs on this too, but I contend that yesterday is the more “correct” expression.

To me it’s like saying the day after Monday…

You mean Tuesday…?

Yeah, Tuesday…

Why didn't you say that in the first place…?

Saying the day after Monday to mean Tuesday is not incorrect, but I’m sure Tuesday would like to get its props and its name out there. Otherwise why not call it second Monday or Monday part Tue?

Back to my ponderance from the other day… and no, not yesterday... I got to thinking about how even after four years, the void is still just as large as it was when it was created that morning, the morning of the 10th of February. I've conditioned myself to steer clear of it and in many ways I've learned not look its way… in other words, I sidestep it as best as I can. Even so, it frequently hunts me down and seeks me out. That’s not to say that I can’t get out of its way, but every so often it catches up and sucks me right in. Then it’s an endless free-fall in a bottomless hole that takes a celestial intervention in helping me find my way up and out.

I don’t always understand how my thought process, or lack thereof, works. I’m not sure how I go from one thought to the next or (often) to nothing at all… disjointed.

Anyhow… I got to thinking about all those I have met and come to know that share the same story, walked that same path and ended up at the same shitty place. People like me/us whom have lost their child to some unrelenting ravenous disease and have these voids in their respective lives. They have fallen and picked themselves up and pulled themselves time and again out of that hole. Making it out guarantees you nothing, least of all a guarantee of not falling back in. That hole never shrinks in size and it never seems to be in the same place and it can suck you in without warning.

As horrible as it was and the aftermath continues to be, we know that our children are no longer physically with us and importantly we know why. At least we all know what happened to our children. What about the person whose child isn't physically with them and they don’t know why? The people who have had their children wander off, run away, remove themselves from the family or worse yet be taken away. Abduction… the word is almost equally as frightening as hearing “we found a mass”.

That made me pause to think which is worse… knowing or not knowing?

Having to go through the rigors and the roller coaster of a ride of having (ultimately) a terminally ill child and having (albeit not a good one) an end, at least there is an end. How is it to live your life in perpetual state of worry and fear as to the safety of your child or if your child is even alive? I maintain that in spite of the outcome of Emmah’s illness, I think I’d still prefer it to not knowing.

Although, if I look at it from another point of view one can spend many years wondering if your child is (going to be) okay and she is right in front of you. The parent of an ill child is privy to both. There is a time upon which a tipping point is reached where the not knowing becomes knowing. It comes without warning and you are left to watch the transition as it happens real time.

Being bedside as your child fights through every poke, puke, operation, procedure and set back and then dies right before you is the worst thing in the world to witness… especially since there’s not a damn thing you can do about it. I might have to rethink my position. 

While it took longer, just the same, she vanished as the matches' smoke.

I’d be negligent in not mentioning Emmah’s birthday… well technically I was negligent, I missed posting a blog post on her birthday. So some 16 days after the fact I sheepishly will make good on it… she turned 18 on the 10th of this month. Emmah you deserve better from me, but I was stuck in the ever present wake of your absence and I was having a tough time finding my way out. Knowing you, least as I remember you, you’d forgive me. 18… what an age to be, it’s hard to not think about all the things that she might be doing were she here with us.

Until I am where you are, I will have to say it from here, 
Happy Birthday Emmah… I miss you.

10 March, 2013

Dusting off an old friend

I'm not sure why I'm here typing this out right now. Oh, I've contemplated time and again about getting back into the swing of things blogging, but I find that without something of purpose to write about that my life is really no different than any other. I by no means mean to say that if I have a purpose to write about that it makes my life different/better... it just means that I have something to write about I suppose... and so this will go.

I suspect that, by now, the few regulars that used to visit have stopped coming over to see what (if anything) I've written. Why then am I writing at all you ask? (HA! I'm writing as if someone else is actually reading this...) 'Tis a fair question indeed and for the answer, I will draw upon a favorite answer of mine from my youth... I don't know. 

I feel like this will be a Seinfeld post... a post about nothing. They managed a 9 season sitcom... I'm just hoping to make to the end of this blog post… Of course I could just make this the end and say, “There, I made it!”

The last posting here is about Julie and to that end she is doing well. Nothing much has happened since that July posting. I mean the usual stuff happens... food spills, dishes get dirtied, CLOTHES… clothes get dirtied… nothing to write about and certainly nothing worth reading about. Since that posting, we've celebrated 6 birthdays with one coming in May and another today.

Yes, today is Emmah’s… her 17th.

Having just passed the three year mark of her passing, I guess I wanted to say something, but there’s nothing to be said other than reiteration. This is where the train consistently derails. I don’t want to drive anyone reading (if any) away with a steady stream of I miss Emmah. I don’t find it to be an odd position that I miss Emmah, just that I don’t think that I need to be telling everyone that I do, nor so often at that.

So where does that leave me? It leaves me risking redundancy. You can stop now if you like… you've been warned.

So February 10th has come and gone and with it marked three years. I don't remember what it was like being 45 let alone 41 when it all began... I am lucky to remember 10 minutes ago, but I find myself wondering where 6+ years have gone. The four birthdays while she was in treatment and the three since then... the lost years!

It would be hard for me to not mention Emmah in some way but I only have the past to draw upon and I realize at some level that’s been the crux of the creative problem for me… trying to find what I perceive to be a balance, and really, I/we are out of balance. I expect that we will never regain that balance thus ceaselessly listing.

Maybe it's a justification to talk about it, or to vent, in any event I just can't go around talking ad nauseam about it. I'm waiting for a fog to lift that isn't going to lift. Life as I knew it ceased to exist the day we found out and since then it's been all wrong. 

Hitting the end of the road created a loss of controlThat loss became a suffocation snatching our breath leaving us gasping asthmatics and our thoughts eroding the spirit of our souls. Time does NOT heal; I miss her just as much today as ever, it only provides the opportunity to figure out how to cope and nothing more! It is the life of what could have been that leaves me in ruins.

To say we miss her is… well… silly and grossly understated. There are no words that distantly begin to describe or explain the emptiness that is left behind; we feel it every single day. It builds starting with the holidays and peaks at this time of the year. It bullies itself to the forefront and becomes the silent elephant in the room casting its shadow over everything… effectively inhibiting the joviality of me writing. So I hope you bear with me a little longer as I lumber on because her absence affects everything.

Being left to speculate on how things would be if Emmah was still here with us is somewhat of a pointless endeavor. Yet in spite of that pointlessness, we still find ourselves playing that game from time to time… especially when we see the successes of her friends. She would be finishing up her junior year. It’s hard to imagine her driving and all the independence that goes along with it. To go beyond where she might be current day seems all the more reason to not speculate because it is a speculation of a speculation. It’s like putting two facing mirrors across from each other in that it’s an ad infinitum distortion of reality.

...And it's only been three years.

Until I am where you are, I will have to say it from here,
Happy Birthday Emmah...I miss you


25 July, 2012

When is soon?

A short and quick update...

Things are progressing well as Julie's recovery seems to be just moving along.

I mentioned in my previous post that there was no node involvement, that was an initial assessment. We now know for sure as the pathology report came back, so officially there is no node involvement, and there will be no chemo.

One drain came out last Friday (luckily for her the one that was causing the most discomfort) and she is hoping to have the second one taken out very soon. Some sutures were taken out as well with more to come out soon. Overall it doesn't seem to have slowed her down much at all.

This just in... She just got off the phone with the powers that be and she's going in Friday to have the remaining sutures and the last tube taken out... so soon is Friday.

10 July, 2012

Merging onto the road to recovery

Roads less traveled hold greater unknowns... I mean it's not everyday that one has to be placed on the road called recovery. If allowed to paint any picture we could on the canvas we call life and have every aspect of it come true, I dare say that no one would paint something that would force them to have to recover... and drinking doesn't count!

Of course painting that picture after being told that you will be forced into taking a detour on to said recovery road leaves you a little more careful with your brush strokes. That all being said, today's news was one might say is a picture worth framing. We know all too well that this war is far from over, but winning battles give the best chance to win the war and today a battle was won. Don't know if we could have asked for a better result for today.

Surgery went as expected (always good to have it go as expected... means no surprises) Had clean margins and potentially the best news of the day (and to this point since diagnosis) is no nodal involvement!

So it's on to complete recovery and reconstruction... of which some ground work has been started.

Their intention is to get her up and moving tomorrow, including a shower. She will also have a more comprehensive post op consult along with what limitations will be place on her as she heals. The plan is to get her up and out of bed and moving and home.

Not much else to report at this time.

Peace all