Seeing Clearly~It's Time To Get My "I's" Checked

Some years ago, approximately one hour before leaving for a three-day convention (and only after I had spent hours trying on clothes and changing purses, and FINALLY making some hardcore fashion decisions…), I was sent to the ER by my doctor and subsequently “grounded” and instructed to “stay local.”  Which translates into “no convention for mom.”  Travis was determined to stay by my side (awww) but my little sister volunteered to babysit (she has since passed away, so this is a sweet memory) and so he took the kids and left on Friday morning, and we girls were left to our own devices for three whole days.  But, this isn't about that.

On Saturday night I called to check in with The Daughter, who had been given (and had graciously accepted) the onerous task of being THE WOMAN on the trip.  Aaaaaaaaaaaaaaaaaaand she had some stuff to say, not all of which was cotton candy and unicorns.  ALL OF WHICH, however, did make me feel like a first-rate heel for leaving her to fend for herself for an entire weekend with three males.  Needless to say, I gave what advice I could, told her that I’d pray for her and that she should take a stand if she needed to, and got off of the phone with my brain all sticky and crooked.   The day after I spoke with The Daughter, I called to check in, and I asked The Dad how things were going  He replied “GREAT!  We’re having a really nice weekend!” I wanted to laugh, as I realized how he and daughter were looking at the same situation through completely different lenses.   I mean, I’m glad that he felt that way...  But, this isn’t even really about that.  

Because here’s the thing about realization:  Clarity can hit you when you aren't necessarily looking for it.  At the time, I lived in a house with four other people;  I never got the opportunity to be…not with them, and so their absence over that three days was fairly significant.  I missed them, obviously, but I also found myself thinking about what we all “miss” about each other every day.

I like to think that, as a family group, we are fairly well-connected to one another, especially then, and for the most part, now.  At the time, we saw each other every day.

Didn’t we?  

And we talked all the time.

Right?

The answer was (and to some degree-even though older children have moved on, and younger grands have appeared-still is):  Yes.  And yes.

But also, life happens, and when it does, we’re no better than anyone else. We get complacent, take one another for granted.

We stop seeing each other clearly; rather, we have become somewhat fuzzy, albeit familiar, shapes to each other; we fade to the verbs of what we're doing, rather than the nouns of who we are.

We fade to:  Nose in a book at the kitchen counter, fingers tap-tappity-tapping on a phone, guitar picks everywhere, leaving-for-work, puttering endlessly.  Glasses, striped shirt, dark hair, cat ears (if you know, you know).  The parts are vaguely reminiscent of someone we recognize, but in the rush of everyday stuff, we don’t really stop to get a real glimpse of the sum total.

Oh, we talk all right, but too often in monosyllabic bits, or short, informational bursts:  “Dinner?”  “Tacos.”  “Work?”  “8:00.” "Babysit?"  "Sure!" "Milk?"  "Fridge."  “Garbage?”  “Yes.”

Garbage, Yes???  What does that even mean???

Ok, we’re not quite that bad, but still, my point is…if we’re not careful, we could be.  Garbage?  YES!!!

The highlight of my every day is connecting with these people, talking with them, being with them.  I don’t want a minute of that to be wasted, and the sad truth is, many of them are.  At a time when family connection and cohesiveness is more important than ever before, when having strong personal ties to loved ones is tantamount; sometimes we still let stuff get in the way.  Why do we do that?  That is what I sat thinking about, contemplating, after talking with The Daughter on that long-ago Saturday.

I don’t believe that this gradual blurring is a result of apathy or laziness; it’s more a matter of being myopic, out of touch, wrapped up in self and self’s stuff. Which is not to say that I live with a bunch of self-absorbed narcissists; I don’t.  Partly it’s just…distraction.  The truth is, we can be distracted away from tending to our loved ones, and by and large we can get away with it, because love covers a multitude, right?  But partly, it is that we live with people~the same people~and we start to have greater expectations of them than we do of ourselves.  And instead of just thinking about what we have and appreciating that and communicating it clearly, we just...don't.  And as time goes on, we begin to “expect," or to need, certain things.  But we stay silent about those things, because they should get it, right?  I mean, if they care, we shouldn’t have to ask, yeah? 

So this is about that...

When we stay silent, a thing happens.  It is not good, this thing.  Slowly, we become continually disappointed-or at least bummed-out by the people who love us the most in the world.  And they?  They are clueless because we insist on believing that if they really wanted to, they could read our minds, or our body language; at the very least they would know that “fine” is never fine, and that “whatever” is no answer at all.  And probably, likely...honestly, we never stop to consider what WE are not noticing about THIER needs.

It just seems so ridiculous, when I think about it, that we get irate with each other over things we could just put out there in the first place.  Why is it so vitally important that The Husband know intuitively that I need a hug?  I mean, that’s nice and romantic and all, but if I really need a hug, and I have to ask for one, and I get what I ask for…I WIN!  So where is the real issue?  And why is it that important for someone to see that I so do not want to wash the dishes and as a result hey grab the dishcloth from my hand and shoo me out of the kitchen?  Last time I looked, we don’t live in a Disney movie, and I bet if I just asked, the dishes would be done, and not by me!  I am in no way suggesting that people stop noticing each other, or neglect being observant and kind.  I'm just suggesting that it's ok to ask, it can be mutually beneficial to help your people to see what you need...maybe don't require them to guess all of the time.  Help each other to get it right!

And so, way back then, I made some lists.  And even though they are by now many years old, I am ready to dust them off and try once again to improve my efforts at human-ing.  That being said...

When I first shared these lists with The Fam, I explained how we appreciate our family, and the efforts which each person makes within it.  I was quick to point out that we were not gathered for any one flaw to be pointed out; that I merely wanted to share some things which I had been thinking about.  I then (flourish!) presented them with the first of three itemized lists.  Yes, three.  I know how that sounds, but they were small lists; it’s fine.

The First:  Conversations We Should Have

There are certain things which should be on our radar, no excuses.  So this is a fairly short list of starter sentences.  The suggestion I made is to try to hit at least a couple of these with each person in the fam every week, just to keep in touch, to keep seeing and hearing each other.  A few examples (as you will see, I like examples.  ALWAYS give an example, if you can):

                “I really appreciated that you ________(please give examples).  Thanks!”                          

                “Hey, is there anything that I could do better for you (please give examples)?  Also,

                “How has your week been?  Tell me about it.”

                “How can I help/encourage you (please give examples)?"

                “I noticed that you seem _____.  What can I do for you?”

                "Let's hang out.  I want to spend time with you."

The last item was not really a conversation starter at all, but just a reminder for us.  I realized that oftentimes, we leave without saying goodbye, go to bed without goodnights.  It was not always like that; we’d just gotten into a bad habit, and honestly, even now, we are still a work in progress on this point.  So it is a favorite of mine: “Did we talk or connect in some way every day this week?”  (yes, leaving a personal note, text, email, vm, dm for someone counts...its the genuine effort that matters). 

The Second:  Things to Talk About…How Can We Help Each Other?

This literally was a list of things which we could all be more aware of, and it requires meaningful input from everyone.  This list would include family things, such as our goals and how we spend time time together, and individual things such as respecting each person’s need for personal time and space now and again; being kind and listening, focusing on what’s important and COMMUNICATING CLEARLY.  Respecting one another, being approachable, and available.  You know, your basic kindergarten starter pack.  Back then, we talked about the importance of laughing together (easy, for our particular group), of scheduling “tech free” nights and family dinners at least two or three times a week; again, we are still working on it, always.

Did I mention communicating openly and respectfully?  Funny story there…  It was during this segment that The Daughter said (slowly, and with great care and respect) “The Brother and I have been talking about family worship, and…”.  Turns out, these two had some fantastic insights which they shared with us; they even had a plan which would work for everyone’s work/school schedules, and took into account the differing ages and attention spans of our brood!  Also, they very gently suggested that perhaps I could “…not…talk so…much, maybe, during the scheduled time,” and that that might give The Dad a fighting chance to be “…more organized, and specific…”.  THIS kind of response was exactly what we had hoped for:  practical, thought-out suggestions which we were happy to receive and anxious to put into practice  We were all laughing by the end (YES, because I know that I talk too much and that The Dad hardly speaks).  We wanted to hear what they had to say, wanted them to know that  they would always have a voice in this space; it was awesome to have them talk to us about talking to each other about talking to us (I know, that was a lot of sentence, there, and I apologize).  And I am happy to report, years later, that we are all still talking-me a little less, The Dad a bit more, and even though the relative distance of our kids moving outward and onward has, honestly, changed the frequency to a degree, the efforts are still there.  We're still connected.  Still laughing.  Still learning.

The Third:  What Do We Appreciate?  What Can we improve?

This is a very short, and personal, list.  We each should ask, share and listen, to the following:

                "What Do I Appreciate About You?  (give examples; examples are important)."     

                "What Can I Improve For You?  (see note about giving examples above) 

Once you have the answers, take action!  Do your best, be better, see the good results as you all work towards a common goal of making personal improvements for the benefit of those you love.

    

The hope:

So now what?  The goal of this “homework” was to help us all to see ourselves from a different angle, with a fresh set of values, through freshly polished lenses.  I want to know what more you think I can do, who else you think I can be, if there is a better way to relate to you.  I want to see you, really see you, the way you need and want to be seen by me.

What “I” think is relative to me.  If I spend my life serving orange juice when you’d rather have chocolate milk, please don’t assume that’s how it has to be, all of the time; tell me what you want, and maybe we can arrive at a compromise, and have a little of both.  In my family, in my friendships and in other important human interactions, I want us to be able to ask for what we’re not getting, to give freely what we can, to teach each other daily.

I need help to be a better me; don’t be shy about telling me what you think!  I'll listen, even if what you say isn't easy to hear, and I will think about and appreciate your insights.

Silent, unmet expectations benefit no one; they rot secretly, and destroy slowly.  Honesty and kindness forge and strengthen; listening and taking action bond together.

I hope that in the process of revisiting these lists,  I'll realize things about my peeps that I never really thought about before, and I hope that I’ll remember to remember.  

Like, wouldn’t it be great to discover that someone actually appreciates that I sweep the floors 73 times a day??   And who knows:  Maybe I’ll learn that they need me to sweep a little less,  because they want me to spend that time making cookies.

They’ve Got My Whole World In Their Hands~Holding on to What’s Important…and Never Letting Go.

For whatever reason, I began thinking about my father’s hands the other day; I have always loved his hands.  They are every idea and belief that I have about strength, stability, and love…absolute  assurance, firm discipline~it’s all there.  I remember sitting next to him at the Kingdom Hall, holding one of his hands, endlessly enthralled by how solid they were, and how the callouses made them seem for all the world like a perfectly matched set of well-worn baseball gloves…soft and creased from constant use, and wholly reliable.  Short nails, the occasional splinter or scrape~these were the hands of a working man, a carpenter, an engineering genius; strong enough to lift blocks of cement, or dig ditches, but gentle enough to always rest lightly on the small of my mother’s back during a prayer.  As I thought about his hands as they were then, I naturally began to muse about his hands now…they are…well, truth be told, they are still the most amazing hands I know, and even though they are aged and more fragile…second only to God himself, there are no hands that I trust more. 

Hands.  What a weird thing to be sentimental about.  I mean, hands aren’t soulful, like eyes can be…they don’t light up a room like a really great smile.  They’re just…hands.  Functional.  Practical.  Nothing to write home about, right?  I disagree.

In addition to my father’s hands, I have come to realize that I have a wonderful variety of hands in my life:

There are, of course, my mother’s hands.  They are older now, too, and time has had it’s way with the shape of her fingers, the strength of her grip.  But time can do what it wants, because when I see my mom’s hands, it’s not the vestiges of age which attract my attention.  It’s my memory of literally hundreds of loaves of bread, and apple pies, cursive “S’s” that look like ducks, and handmade clothes…properly fastened diaper pins…those hands spent years teaching me with every movement, every gesture.

And the hands of my siblings…how else would I have learned how to play jacks, or turn the pages to find The Monster at The End of This Book!, braid my own hair (badly), or spin wool by hand?

Then there are the hands of my husband…walking with me at our first convention~holding hands, because we were engaged and it was “legal” to do so; it was his hands which helped to deliver our babies, hands which to this day never stop working to provide.

The hands of our children…what sweet, strong, beautiful hands they are.  As a mother and a grandmother, there has been no greater joy to me than to have one of my babies grab my hand and hang on…as we pray, or walk, or sit.  Little ones who grab your hand with theirs to lead you to their latest discovery, eager to share…every day, at some point, Emma grabs my hand in hers and commands, “’Mon, Naan.  SIT.”  And who am I to argue?  And as my children’s hands age, they will hold mine for different reasons:  To share joy, to survive grief, to let me know that they will be my strength when I have none of my own with which to fight~that now, they will hold my frail hands in theirs, and they will not let go.  And the circle continues, the family tree continues to reach out, comforting in it’s embrace.

As if all of that is not enough, in addition, I am supremely blessed by the amazing hands of my friends; hands which are always ready to make a meal, grab a baby, do the wash, share some wine…whatever I need, those hands are there without question.

Even the bible reveals how important hands are:  Psalms 145: 16 says that God will “open his hand, and satisfy the desire of every living thing.”  Doesn’t that just make you eager to peek inside His fist, to try to get a glimpse of what treasures He has in there, just for you????

My father’s hands, which started this whole thing, are, like my mom’s, older now.  And yet, even in their fragility, they are still, to me, so precious.  Much like my favorite scripture as cited above, my dad’s hands, and, in fact, all of the hands of all of the people who mean so much to me:  Whenever they open their hands, my life is impossibly enriched.  It is those hands which hold me when I am weak, and join me when I am triumphant.  They hang on with me when I am anxious, or hopeful, and in times of despair, they always know just what to do.  They always have, and they always will; I hope that I can learn from them…how to accept all which they have to offer, and how to offer something of value, in return.

If I can do that, and they can do that, then we all win.  

HANDS DOWN.

"Friend me!" Wait...what was your name again???

This morning, I picked up my very good friend and took her to a place that she needed to get to.  Then we went and got some Starbuck's (her treat, she insisted), and came back to my house, where she proceeded to spend the afternoon helping me weed and spread mulch.

We had a water fight in front of the whole geriatric population of our street, and when I stopped in the middle of laughing and said "Hey, thanks for hanging out and helping me with this" she said (and in my head, I said it in perfect sync):  "Jen, you are my favorite person, and I am not exaggerating when I say that I would happily spend an entire day sitting with you and watching paint dry."  That's now kind of a 'thing' that we say...you know..."I told you~watching paint, whatever it takes." 


That's who we are, Sylvester and I:  Friends who have "things..." that we say, gestures we make....a whole new language that we build day-by-day. We have had each other for less than three years, and this is not the first time that she and I have had this conversation, or expressed  to one another the wonder and blessing of having  that kind of friendship in our lives.  After all, I grew up with five sisters who I love dearly, and I never really felt the need to supplement my life with other women.

So, when I met this friend~who I  shall refer to here as "Sylvester" (mainly because I can)~she had an entire posse of friends; certainly, to the casual observer at least, she had no need of me, and I did not, I hate to admit, take much notice initially.  And yet, here we are:  Rarely does a day pass when we don't speak, or connect in some way, and it is nearly impossible for me to remember life before...before Sylvester.  And I don't want to. (BS...HA!)

Which makes me all "thinky" about friendship, and so for fun, I zipped on over to Dictionary.com and searched "friend," with these results:

friend

[frend] noun

1.

a person attached to another by feelings of affection or personal regard.

And certainly, we don't want to forget these words found at Proverbs 17:17~one of my favorites~

"A true friend shows love at all times, and is a brother who is born for times of distress."

Which confirms a few thoughts regarding friendship which I've had lately.

This Sylvester character...Syl has called me her "bestie" virtually since the first day we met.  I have to admit that I found this annoying, and now I think that I can finally understand why:  I feel like the word "bestie" is one of a million cheap, overused and generally meaningless (Sylvester knows that I think this...it's ok) terms which people throw around each other like verbal confetti:  Words that mean nothing and basically just clog up the vacuum..."BFF," "Bestie..." often times the very word "friend," itself.

For example, I know a woman who~like so many others, myself included~is on Facebook. According to her stats, she has OVER 3500 FRIENDS.

Except that, no, she doesn't.

I don't mean that to be rude, but seriously!  If we adhere even loosely to the primary definitions of "friend" which I found and cited above, this woman does NOT have over 3500 friends.  She has many acquaintances, and most certainly some friends of friends of friends...but I have to wonder how many of those she would even recognize on the street, let alone watch paint dry with.  It's a ridiculous notion...NO ONE has 3500 friends...who would want to??

This is a phenomenon which actually concerns me greatly...the very notion of friendship has been diluted to the point that it is hardly recognizable, anymore.  We throw the word around so casually:   "I have this friend who does my hair..."  Do you, or is she just a nice girl who you see and give money to every six weeks or so when your hair gets out of control?  What is her middle name? Where was her last job?  What is her real hair color???   These are details that most friends know about one another.  And how often do you hear this exchange between near-strangers:  "Friend me!"

Friendship, when given freely from a full and open heart, can be a beautiful and sustaining anchor to the person who receives it.  The idea of reducing that value to a series of requests on social media, or to a catchy acronym, is just...sad, really.  And don't get me wrong, I appreciate the connections that I have made on Facebook (the only social media which I have been able to figure out how to navigate); it's the idea of being collected that I have an issue with.

That woman with the 3500? About once every quarter she tries to make it 3501...but I have yet to accept her request to be a "friend," and I won't be accepting anytime soon, by the way; she's a nice enough person, but she doesn't want me.  I think that she just remembers that I'm alive, sometimes, and tries to add me to her ever-burgeoning list of peeps.  Which is nice and all, but...

Because of my aversion to being just another notch on someone's friends list~and my own tendency to not want a lot of random people who I don't know just hangin' around looking at me and my stuff~I can honestly say that I am incredible grateful for and proud of my little band of BESTIES, because despite appearances to the contrary, I am weirdly shy.  It's actually somewhat painful and often mid-level terrifying for me to introduce myself to new people, and sometimes I find it difficult even to talk to people who I know.

This, then, is one of my own truths: I'm actually ok in a small crowd if I'm busy; it distracts me from my anxiety and panic; however, I can rarely sit and do nothing...I am a horrifically awkward "small-talk maker."   In a large crowd, I feel like I fade into the scenery and can safely pass un-noticed (if I'm not with Sylvester, who is a crazy peep-magnet), so I'm good there, too.

In fact, I consider myself blessed~very blessed~in the Friends Department.  For a weirdly shy, nerdy girl, I've managed to accrue quite a lovely group of people who are INSANELY qualified at being terrific.  Sylvester and all of the others are part of my universe because, however we may have found each other, when we did, thankfully we saw something that said "CLICK!" and we paid attention.

There is something about being a part of a true friendship that is honestly one of the most rewarding things that can happen to a person, and that has nothing to do with lists of names.

As far as I am concerned, quality wins over quantity every time.  I may not have masses knocking down my door, but I do have my sisters and SP on speed dial, and Sylvester is never far from the counter.

EVERYBODY WINS IN A FRIENDSHIP DONE RIGHT.

    

For my sisters...missing you makes the miles stretch, but memories make the journey sweet.

It's been raining all morning, not even steadily...just a sort of gentle drizzling that encourages the birds to just "stay put, but please keep singing in the trees"~singing in the shower, I guess.

The house is quiet, for once, and has that sort of sleepy, cushioned-and-cozy, tucked-in feel that only a soft rain can produce.  As I pad around the house in fluffy socks, listening to the relative quiet and just allowing my mind to wander as I thoughtlessly go through the motions of sweep-sweep-sweeping the floors and straightening pillows, I suddenly recognize a sort of powerful, peaceful ache in my chest...I hadn't noticed it before, but now that I do, I take a moment to pay attention, and when I do, I realize that the ache is YOU.

The rain which has been gently caressing my thoughts and whispering sweetly in my ears is familiar.  As it falls~outside the kitchen window, into our trees, masking the schwoosh of traffic~it sounds like the rain that fell so many years ago on three road-weary sisters, in the mountains of Alaska.  Every drop puts me back in that cabin, and I can see it so clearly:  The one room cabin is sparse, but clean.  There is no TV (!!!), two beds, minimal lighting, a small table, two chairs,and us.  It is perfect.

We unload the car, and promptly find and follow the boardwalk at the back door; it leads to pristine bathrooms, which we are delighted to locate.  On our way back, we can't help but notice that there is a smallish waterfall right outside of the back window. The rain keeps falling, but we don't hurry, because it's friendly, not fierce, and there is so much to take in.

We get back to the cabin and realize that not only are we starving, but we are too tired to actually go somewhere and do something about it.  So we scrounge in our bags and locate some sticks of pepperoni which we slice and serve with good bread and cheese.  I believe there were Mint Milano Cookies for dessert.

After that, with full tummies, comfy clothes on, and the rain still beating a steady rhythm on the roof (not to mention the shouts of "Bear!  Bear!  Stay inside!"), we each grab a book and crawl into the beds to read by the light of a single 60-watt bulb.

I don't know about you, but that was the best nap I've ever had, with the best company I could ever ask for.  I'm glad that today sounds like that.

I'm also glad that Cyndi didn't put food out for the bear like she wanted to...  >.<

The view from beyond it all~Is hindsight really 20/20, or is this just time healing wounds and begetting acceptance?

WARNING:  THIS IS A STORY ABOUT CROHN'S DISEASE AND STUFF OF THAT NATURE.  IT'S NOT PRETTY, AND I HAVE HONESTLY REPRESENTED THE FACTS.

I had forgotten about this piece that I wrote for a wonderful group that I belong to:  The Crohn's Disease Support Network.  Some years ago, I thought that I was facing (and who knows, I still may, one day) some pretty major [health] stuff, again.  As I researched the particulars of my situation, I wrote this blog and posted it on the CDSN forum, hoping to find someone else who had travelled this road with these circumstances; as far as I know, I am still the only person who may have to jump these sharks.  An update:  Since I could not get my insurance to agree to this surgery, I didn't get it done, so my J-pouch and I are still roomies.  My docs switched me to Humira, which is basically chemo's tough, street-wise cousin, and we are getting along quite well.  Maybe I will end up needing to go through all of this again, one day, but in the meantime, life is good, and I can't complain.  The boat I'm in has some leaks, for sure, but it's still afloat, and at the end of the day, I'd like to believe that I can paddle with the best of 'em!

That being said, here is a post from approximately 2010 - 2011.

My reason for posting this is simple: I am trying to locate a kindred soul, and it might be you. I have Crohn's Colitis and a J Pouch, which is failing (the pouch...the CC seems to be in high spirits...), and I need to have an ileostomy placed, and soon. Righto. No problem. Been there, done that; however, since my last trip down "Ostomy Lane," alot has happened, and...ok, let's back up a bit.

In a (huge-ish) nutshell: Married '91, baby '92, lalalalala '93 - '94, pregnant sold home bought home fixed home baby #2 moved into home '95, sick ick flu yuck cramp couch weight gone husband injured two-story fall tired pain weak nursing baby ALWAYS sleep sleep (unconscious?) bathroom couch FLU! (Feb) housebound PAIN PAIN CRAMP BATHROOM FEAR FLU hospital RUSH very bad 10 bags saline per hour very dehydrated very delirious (Mar) NO FLU New words: Ulcerative Colitis 5 weeks Room E-41 NPO hush hush procedures pic line veins corrupted purple arms little girl little boy ever going home to them? New words: J Pouch ileostomy surgery (Apr) reversal stoma gone (May) '96, lalalalala ugh. nausea, weight loss malaise ick again pouch closing surgeries to repair X 10 OUCH! sitting an issue BIG issue first abcess big operation very complex (in my case) no recovery time before first fistula surgeries X 3 (Apr - May), New words: Crohn's, you have it 99% sure meds? no not right now '97, fistula fistula fistula hosp hosp near death hosp bowel obstruction...on like that never medicated '98 - '01, pregnant '01, new boy (Aug) '02. hosp meningitis brain damage (!) double pneumonia influenza near death ICU going home ever? (Mar) '03, same old story over and over '03 - '07, continued issues New words: NO Chrohn's mis-diagnosis OOPS YAY no Crohn's? Ok~now what? '08, fistula surgery (Jan) New [old] words: YES Crohn's New words: Remicade '09, fistula surgery (Jan) New words: Crohn's Colitis Remicade effective? New [old] words: Ileostomy '10.

WOW.


Well, I really didn't plan on any of that stream-of-consciousness purging, here, but it brings me (finally!) to my current dilemma (and it felt kinda good, so thanks for sticking with it!):


When I had my first surgery, waaay back in '96, it was before I had a chance to get my "tummy" back (ladies, you know what I'm talking about). So, when the doctor sliced into me (a~standard?~vertical cut just above my navel running to the pubic bone) and then sewed me back up, temporary ileostomy in place, it left me with a...tummy. A lumpy, stretch marked, stapled, scarred, flappy tummy. A tummy which no amount of exercise will eradicate. Mush. Now, it's not pretty, but it's been ok. Well, ok until now. NOW what I have is this: I am very bloated from the Crohn's, and this makes the tum more prominent, and therefore I'm having a difficult time sleeping, being comfortable in any way, wearing any of my clothing, etc... Add to this the fact that I need to have another ileostomy (which means the bag in all it's glory, in all liklihood as a permanent deal, this time), and I have got a...situation.


That situation is this: I need to have an abdominoplasty (tummy tuck) prior to the surgery for the ileostomy placement. I need this procedure, not for cosmetic reasons (as sexy as I'll be with surgically-enhanced abs of steel from which is hanging a BAG OF P**P), but rather so that my surgeon can have a solid platform upon which to build the thing. Why is this such a big deal? Very simply put, because, sadly, as I grow older *SIGH*, gravity will not be my friend. This saggy baggy tummy will droop, and create unhealthy and unwanted amounts of pressure on the stoma which I will have, and that, my friends, could lead to untold complications and further corrective/maintainance surgery. The Tuck must be done first; it cannot be done after the ileostomy is placed.

And while we're on the subject, may I please tell you, The Tuck is not for weenies. Seriously~I am not particularly wimpy, but I would rather chew colored glass than volunteer for this surgery for anything other than medically sound, necessary reasons; we'll get to that later, though.


For now: The Appointment with The Plastic Surgeon...A Brief(-ish) Highlights Playlist...


I was ushered into a beautiful office, a lovely waiting room, a comfortable exam room with a nice comfy chair, a fabulous fuzzy purple robe...and a connected studio where my glamour shots (NOT) would be shot from every imaginable angle. Suddenly, those...other exams...they don't seem quite so bad...


The doctor explains the surgery while looking at (and grabbing) my belly:

"Hmmm... This is...significant amount of flesh... (poke schmoosh jiggle squeeze)." Thanks for that, Doc.

"I think I need to make...BIG cut...will be big cut, big scar." WHAT??? You mean, a scar to take out my OTHER scars???

"Many staples. First (pat poke schmash stretch pinch lift), I core out (!!!) belly button to create new one for you...here, I think. My concern, after other previous surgery, is that the blood vessels, they have been cut. They stop...this old scar. This old scar...the new navel, we don't want the skin to die (!!!): that is possible complication for you."

Right...dead skin = complication; complications = bad. Got it.

"This request is first for me...(POKE!)" That does NOT make it better. "I need to think...how will this cut (yes, I know, the BIG one) heal for you? We need to be sure it heals...tight. It must be firm for Dr. ***** to cut, for his cuts to heal on inside. There will be many staples, it is a big cut (!!!). This surgery, it will be MAJOR hit for you...for your abdomen. I think...extra recovery for you. And the Remicade...? We must be sure (squeeze jab pinch pat jiggle). I think...we will cut...here...and STREEEETCH the skin and muscle down and we staple. You will lose, I think, most of this (indicates old blood-vessel-stopping-scar from previous surgery). We must be sure of healing. I think at least three days, maybe a week in hospital."

To sum up: Cut staple cut staple cut staple...CUT!!! I get it, I get it! Big cut, big scar, big pain, big recovery. BIG! Until the stoma is placed, I may or may not have a brief career as a recovering belly-button model, except that I may or may not leave the hospital with a belly-button.

And PS: I understood the concept of "stretch" without all the extra "E's!!!" That was just arbitrary scariness!


SO...

Insurance:

They say: "Cosmetic." They say: "Medically beneficial, but not medically necessary."

I say: "Cosmetic my..." I say: "Since when are beneficial and necessary exclusive of one another?"

They say: "We're insurance, and we don't have to, so there..."

I [want to] say: "Look at these lovely photos which my plastic surgeon took."

They [would say]: "Ugh. Who should we make the check out to?"


Doctors: They are conferring and coordinating, writing letters to my insurance company, and overall taking a lot of thier own very valuable time to argue my cause, fight my case, march my march!

Remicade: Abhors, obstructs, delays, hinders and just plain out doesn't-believe-in the healing process.

Recovery: Will take up to 6 months, but the doc may consider me "healed" at 3 months if I have been a good girl and none of my flesh has died (!!!). I cannot have the ileostomy placed until I am judged completely healed from The Tuck.

My quest: YOU. I need you. You must be out there somewhere; another person who has faced this particular set of circumstances... C'mon, universe! Help us to meet! I just want to know what it was like for you. Was it worth it? Are there questions I should ask? Pros? Cons? Regrets? I can't believe that I'm the only person who has ever had to have this done, and if you, or someone you know, or even someone you may meet someday has had any experience with one or both of these surgeries, please tell me!

Lastly, let me say that even though I speak lightly and poke fun a little, I am blessed with my very own Medical Dream Team, from start to finish, and I would be lost without them. And that is no STREEEETCH!

Keeping him safe...I thought I was doing it right...

I went to online today, to Sammy's [former, thank god] school's website, and there was a survey there, an apparent attempt to "improve our school."  It got me to thinking that I might FINALLY be able to write about what our school experience was last year; so thank you, Kelloggsville, for that, at least.  Let me tell you, the experience was NOT good.

 

Sammy was in 4th grade, last year, and we entered his new school with high hopes.  As some may realize, he has some challenges:  ADHD, OCD, Tourette's, and anxiety (with some developing paranoia).  In light of these facts, I made an appointment with our new principal before school even started; I wanted her to have plenty of time to become familiar with Sammy's "schtuff," and to have the opportunity to ask questions or contact his doctor or therapist; whatever she felt that she needed to do.  I requested that she read over the records which I provided, and to please share them with his teacher(s) and school counselor.  I stated that we would do whatever was needed to help to facilitate a successful school year for him.  I asked about securing a parapro for him (as requested by his physician)...she said "Oh, we don't do that."  I was a bit taken aback by that curt, quick refusal, but I was assured that Spencer was in good, competent hands; he would be spending his days with a teacher who was "great" with kids who are "quirky."  Um...yeah...not quite.

 

Let me be clear:  This is not about bashing either teachers OR public education;  I am a staunch supporter of both.  I believe that teaching is the highest form of love; it is truly where everything starts.  Where teaching is absent, nothing can grow.  This has been my experience.  I have loved teachers since before forever.

 

I won't get into all of the gory details of Sam's 4th grade year~the meetings, the emails, the tears (mine and Sam's), the heartbreak which I felt and subsequent prayer that I said every day that I had to send him to that place ("Please, Dear God, let them be nice to him.  Please help him to not feel so alone.  Please help him to know that I haven't abandoned him to these people, that I have no choice but to send him there.").  Basically what happened is this:  No one cared.  Not pro-actively.  Not in any way that helped my little boy.  No one did anything to reach out to him, to touch his heart, to HELP HIM SUCCEED.  They saw how heavy he was, and they did nothing to lighten his load.

 

Another point for clarification:  Sam is awesome.  Great.  Terrific.  Funny.  Highly intelligent.  He is also frustrating.  Talkative.  Highly energetic.  Socially unsure with his peers.  He makes errors in judgment because he can't focus long enough to remember this:  "Think first, THEN do."  Sometimes, however, he is just naughty, plain and simple~because he's a kid.  Naughty is what they do, on occasion.  At home, and when we are with him, we acknowledge these facts.  Why?  Because even though he has more acronyms after his name than any kid should, and even though those may be reasons for his behaviors and decisions, they must never be viewed as excuses.  Sammy has to learn the same lessons which other children, of all ages, do.  This means that we can't use them as excuses, either, and by and large, we don't.  We have expectations of and for him, and in general, he is bound by the same rules, discipline, etc..., which were applied to his siblings.  However, the conclusion we have reached is this: 

 

Even though all of the kids have to clean their plates, if one of them needs to use a fork instead of chopsticks to achieve the same results, so be it.

 

I say all of that because I want to be clear about the fact that never, not once, did we ask his school to make exceptions or special rules for him; we just hoped that they could help him to discover different tools.  In fact, I actually said to his principal:  "We don't want different rules, but we need different tools."  Reasonable, right?  I offered to do whatever I could.  I was told "We'll call you if there is something you need to know.  He needs to have the opportunity to figure things out at school, even if that means some bumps along the way.  We are preparing him for 5th grade and for the "real world."  He must learn to be responsible."  All of which is true, and must be acknowledged.  All of which I agreed with (and still do) and all of which I agreed to (and regret).  The words were right, but the methodology...not so much.  I broke my own cardinal rule, and I did not listen to my tummy.  I trusted them when they said that they would help him.  I didn't press it (!) when his teacher told me that I was neither welcome nor needed in his classroom; so, once a week. I just spent a day in the copy room, doing my thing, hoping that just my being there would be good enough.  When the school counselor said that I should try to keep home and school separate, I was willing to try doing that, even though it felt uncomfortable.  And still, my son suffered.  He was bullied, by students and yes~by teachers.  Now, he made plenty of bad choices, and suffered some consequences for his actions, as it should be.  But you see, there was never any commendation...just condemnation.  What little kid can survive, let alone thrive, in an environment where he spends 6 or more hours a day with adults who hate him and never see that he's good?  Does that word~"hate~"seem a little over the top?  A bit harsh?  Let me skip ahead to the last day of school...

 

Imagine this scene:

 

Spencer and I, waiting to say goodbye to all of his friends as they return from a skating party (he did not go skating; he lost the privilege due to unfinished responsibilities at home, I believe).  As we wait, the principal arrives at the school ahead of the others.  She stands within 5 feet of Sam and I; she says nothing to us.  As the children and other staff arrive, no adult (save one, Mr. B, who is fabulous) will acknowledge us standing there.  Can you picture it?  Forget about me...they are IGNORING a 10-year-old!  Sam's teacher and his counselor both walk by, neither woman even attempts a greeting.  Fortunately, Sam does not notice, as several of the other students have (thankfully) stopped to say goodbye.  As we are finally leaving the parking lot, Sam hangs his head out the window, waving and shouting goodbye, like all of the other kids on the bus and in various cars.  He spots his principal, standing there.  Waves like a crazed person.  "Mrs. D...!  Mrs. D...!  Bye!!!  Bye Mrs. D...!" Mrs. D's response?  First, she looks straight at him and says nothing, emotes nothing~not love, not loathing, just...nothing.  She then Turns. Her. Back. On. Him.  This happened.  I saw it.  I wish I could say that I was surprised.  I'm just grateful that, in all of his excitement, Sam did not notice; he would have been crushed.  As for me, this experience has only strengthened my resolve that never again will my son darken the doorstep of Southeast Kelloggsville.  I have been so hurt for him, and so...disappointed by these educators, that I haven't been able to write about it until now.  I still get choked up, and I haven't even written about the worst parts.

 

Cut to the survey that the school asks me to complete.  Gladly, I will answer these questions.  I still hope to speak with the superintendent of the district.  Why?  True, doing so can't undo the hurt that was done to my boy, who was most certainly "left behind."  However, if our bruises can shed a light on what is, in our experience, an inexcusable lack of quality support for special needs children, then sharing this story is the only responsible thing to do.

 

Below is a synopsis of my "survey answers:"

 

"What is absolutely necessary to define a "good" education? 

 

1)  Consistent and meaningful communication between home and school.

2)  A safe, nurturing environment for student, with an emphasis on strong character development and mutual support.

3)  A well-educated, enthusiastic, dedicated staff who are willing to extend equal opportunities to un-equal, differently gifted and highly individual students.

 

The fact is that that there are many demands on teachers today to be everything and more to their students, and this in addition to navigating the very unstable waters of educational politics.  This leaves fine educators with precious little time to actually teach, and leaves education in general with severe~and dangerous~deficits.

 

In my opinion, schools in general and Kelloggsville specifically needs to change two things, and they are co-dependent~not exclusive~of one another.  The district needs to do whatever it takes to get our schools back to K - 5 buildings; grade level schooling is a disaster, and has left many children behind.  Children who relate more easily with those a bit younger or older than themselves are frequently lonely and oftentimes straight up bullied in what I consider to be an administratively-bred nightmare.  But even before the elementary buildings are returned to their previous, somewhat tenuously balanced state, the re-education of our educators must begin.  Children face so many hardships in today's world, and while~yes, it is true~educators must prepare them for the "real world;" the "elementary years" are where, in many cases, we leave the last vestiges of our innocence behind.  In light of those facts, then, I feel that our teachers must be allowed, and TAUGHT, where necessary, to be even MORE compassionate, understanding and kind, even as they establish rules and teach standards of conduct and concepts of respect and accountability.  Children must be taught to "play nice," and to be thoughtful and respectful of others..."real world" lessons that they can not and WILL NOT learn from educators who are, quite frankly too overworked, underpaid, tired and in many cases too disinterested in actually teaching our children because they are so focused on reaching grade level expectations that they have forgotten that they need to reach our children."

Because I said so...that really is the reason.

Because I said so

March 17, 2008

J.Daymon Cole~For my children

 

I am your parent…because I said so

 

I said yes to that responsibility, that joy

I said yes, I do want that girl
And that boy

And so now here you are

So full of light
And I’m here to guide you, and that is my right
Because I said so.

Because I said so

Yes~those words sometimes chafe

But without them, how could I keep you safe?
I know that to you, those words aren’t kind
They seem to do nothing for you, only bind
And I know that right now, you don’t understand
And you feel like I’m always there, holding your hand

And in a way, I am

Because I said so

"Because I said so,"

It turns out, means much more
Than restricting your life or assigning some chore
Because I said so..it’s my job, can’t you see?
It’s the thing that God gave, when he gave you to me

 

Because I said so,

I have watched as you grow
And with every moment, I have had to let go

Because I said so,

I watch as you choose
I must cheer as you win
Console when you lose
I must help you to see that there’s value in both
That both will contribute so much to your growth

Because I said so,

I must hold on, it’s true
But you never notice, when I let go of you
You probably don’t see how it tears at my heart
When I let you go somewhere without me, apart
You probably don’t know, I worry each minute
I can’t wait until I check your bed, and you’re in it!

Because I said so,

I say “No, not today.”
But I also must watch you, as you grow away
I must give you freedoms, before I am ready
I must give you bounds, and that makes my heart heavy
I must know the difference, because you don’t, yet
I must hold firm, I cannot relent

Because I said so,

I must listen to you
I must ask the right questions, I must see them through
I must require accountability,
But acknowledge you’re a child
How best do I teach you...I have such a short while!

All that I want for you is the best

The safest, the utmost, the pinnacle, the crest!
I must remain steady, yet I have to bend
I must be here for you, and I am~without end
Because I said so

Because I said so,

I am grateful for you
For the things that you’ve taught me
The stuff we’ve been through
And the stuff we’ll still go through,
And yes, we’ll survive!
(My parents had ME, and they’re still alive!)

Because I said so,

I will tell you “I love you”
In front of your friends, I will kiss and will hug you
I will fuss and I’ll tease
I’ll correct and appease
And one day, in a mirror, I promise,
You’ll see

Because I said so, that

"Because I said so,"

Is giving, and taking
It’s holding, releasing, healing and breaking
It’s yes, and it’s maybe, and “definitely no!”
Sometimes it’s saying “I tried to tell you so.”
It’s love, understanding, a laugh and a smile
It’s letting you know
You’re worth that extra mile

Because I said so,

It’s my privilege, my assignment
It came to me wrapped up in you:
My consignment.

Because I said so,

You will always be
My treasure, my precious
My child…you see?

Because I said so,

I will watch you with pride
I’ll delight in your changes
I will be by your side
I’ll encourage, I’ll discipline,
I’ll delight as you grow

I will do all of this

But I’ll never let go.

Because I said so.