The Jelly Jar ~

Second Shelf, in back to the right, left of the Mayonnaise 

Either a person is blind or not, right?  Can someone be a “little” blind or wouldn’t that mean they are not blind at all, but a “little” sighted?  “Not blind enough to be blind.  Not sighted enough to be sighted.”  This, a statement made by a friend referring to her spouse, a man whose visual world had been slowly closing in as a result of advanced Retinitis Pigmentosa.  I imagine this statement would make little sense to most people.  Indeed, a few years ago, it would have left me scratching my head. 

Under the right conditions, Mandy appears to be a typical 13-year old.  When well rested and in a familiar, brightly lit area, Mandy is just another kid.  “Does she really need it?” are the thoughts I imagine perplexed onlookers are thinking when they observe her with her cane, often holding it carelessly, while jumping from one floor tile to only other same colored tiles in the supermarket.  That and successfully avoiding “stepping on the cracks” gives the appearance of minimal, if any, affliction.

I can recall more than one instance when a parent of one of Mandy’s peers, already well acquainted with her impairment, looked on in astonishment at Mandy bump into a rearranged or neutral colored chair against a stark background or feel her way through a dimly lit or unfamiliar hall when without her cane.  Even more striking are the gasps of disbelief when, for whatever the reason, the subject of teen driving inevitably crops up, and it becomes known that Mandy will not be getting a driver’s license.  I admit, my initial gut reaction is annoyance, “Do you think she has a cane because she has vision just a little worse than other kids?”  I do conceal the impulse to share these fleeting thoughts, of course, as I am fully aware of the naiveté inherent in well meaning people who have never had to confront these realities.  Of course I am aware, since I used to be one.      

The surprised reactions have gotten easier to deal with over time.  I expect them.  I have found creative ways to avoid tender subjects when I am feeling vulnerable and sensitive or, I am armed and ready with responses and education.  Given Mandy’s usual “typical” appearing behavior in structured/planned settings, people have come to expect, well, the expected from her (this is a double-edged sword; more on this another time).

I have thought a great deal over the years about how to describe to someone just how different and challenging it is to raise and teach a vision-impaired child truly is, despite her still having decent acuity and a good deal of useable vision.  When everyday people don’t seem to get it and some situation arises where I feel I need (or want) to help someone see just how pervasive the impact of deficits in vision are to acquiring basic life skills and the general task of parenting, I have found myself uncharacteristically without words.  

We couldn’t seem to come up with anything quite fitting enough to capture our daily reality.  Our first ideas just weren’t sufficient…....”sneaking” birthday gifts in the house easily undetected (heck, I can do that with my fully sighted husband as long as the television is on), installing an institution style fluorescent light fixture in the living room, needing to “teach” Mandy how to find something she had dropped.    

In an effort to not embellish our experience either, I began trying to think of an example of something ordinary, yet frustrating just the same.  One day it came to me.  A simple, normal, not over-the-top and yet almost daily occurrence in our household and one every reader can identify with: the jelly jar.  You read that right: the jelly jar.  

Do you remember how you learned to make a peanut butter and jelly sandwich (or, ham and mustard or turkey and mayo……..)?  I don’t remember how I learned.   I just did.  I just “knew” what to do once the time came to do it.  Was it that way for you too?  Now, parents, think about this from the perspective of raising your children.  Do you remember how they learned to make their first sandwich?  Did you “teach” or show them how?  I bet some of you are scratching your heads right about now and doing some mental judo to try to remember and/or to try to describe how, in many cases, you did not ever actually go out of your way to demonstrate to your children, step by step, how to make their first sandwich.  They just did.  It was messy, no doubt, but they did it.  Were we all hard-wired with an instinctive knowledge of exactly how to do this simple, yet also highly evolved task? (No, we weren’t)  So, how did we learn?  It’s called: (here comes some of my college psych “theory of learning” knowledge I thought I’d never use again) Incidental Learning.  Also referred to as “informal learning”, incidental learning is learning which takes place without any intent to learn or to teach.   Not surprising, the majority of incidental learning is visual.  At some point parents, you went to make a sandwich (where you needed jelly, mayo or mustard…….work with me here).  One or more of your children were in your vicinity and “noticed” you making the sandwich.   They watched you open the refrigerator and observed you reach to the back right of the second shelf for the jar of jelly.  Guess what mom?  At that moment, you “taught” your child where the jelly is kept.  While engaged in some other activity, presumably, the child then “noticed” you struggle a bit to open the jelly jar, the lid stuck tightly with the residue of gunk from previous rounds of use.  Now, the child has “learned” how, with what degree of force, to open the jelly jar.  You go on to get the bread and peanut butter.  You spread each with a separate knife on two separate slices, scraping if necessary, close the sides together and viola…..a peanut butter and jelly sandwich.  The next time little Jimmy has a hankering for a PB & J; he may be ready to be on his own.   He may want to do it himself or you, up to your ears folding laundry in the other room, may welcome Jimmy’s independence for this safe, simple task. He will go on to make many sandwiches and you and he will likely never talk about how to do it, how you knew how to do it or how he figured out how to do it.  It just happens.

Almost nothing is learned this way for a child with significant vision impairment.  For blind children, there is virtually no incidental learning.  Verbal description and hand over hand instruction is often the bare minimum required to teach even the simplest of tasks for the blind child.  So it is for the vision-impaired child as well.  Despite having a measurable visual advantage from their blind peers, the vision-impaired child’s ability to learn from the natural occurrences in their environment is strangely similar.   

I must’ve pulled the jelly jar out of the refrigerator dozens and dozens of times before Mandy was at an age appropriate for her to attempt making her own sandwich.  When the time came, she had no idea where the jelly was, how to “look” for it or what to do with it when she found it.  We literally had to “teach’ her where it was and what to do.  Even the concept that opening the jelly jar requires more force (and why) than say, the peanut butter jar.  This may not sound like much of a heavy challenge, and indeed, it really was not.  However, this has been how just about everything was taught to, and learned by Mandy.  Add to that her feisty, easily frustrated temperament, and, well, it has not been easy.

I’ve learned quite a lot from being submerged in the world of disability, special education and IEPs.  Like so many other parents and family members of children with additional challenges, I have learned to assume little, and if at all possible, nothing.  This goes for typical children as well.  None of us really knows what any other parent is contending with in raising a little person into a mature, well-adjusted adult ready to exert their independence and make their mark on the world.  Let’s take a tip from our blind and vision-impaired neighbors.  The next time we see a child with a cane who clearly can distinguish the brown from the yellow tiles, or any other special child displaying behavior which is not consistent with what we would expect given our insufficient preconceptions, let’s consider the unseen.

Teetering Between Fully Sighted and Totally Blind: Visually-Impaired

“Not sighted enough to be sighted and not blind enough to be blind.”  A statement made by a friend whose husband’s world has almost literally been closing in on him due to the retinal disease called retinitis pigments (RP).  Does this sentence make sense to you?  It does to me.  It really does to me.   

Many surveys and research studies over the last few decades have identified blindness as one of the top fears of persons in a multitude of different cultures.  It is frequently among the top five fears named.  Deafness, by contrast, doesn’t usually make the list, even if more than twenty-five items or more are indicated.  Interesting to note, if one were to investigate smaller, more specific people groups, specifically the deaf-blind community, a totally different perspective results.  Within deaf-blind groups, when asked which they would choose if they could between being blind or deaf, the great majority chose blindness as preferable to being deaf.  Can you make sense of this?  Once one knows more about each population, it begins to make sense.

I learned some interesting things a few years back when a good friend chose the local deaf community to study as part of a human service minority group course requirement.  She shared with me how tight knit the community of deaf people tend to be.  The reason they are so tight knit is related to the reason most deaf blind people would choose to be blind over being deaf:  communication.  As dreaded a thought as it is to us sighted folk, a blind person can learn and manage to get around without eyesight.  However, despite mobility and other sight-related activities being an advantage for deaf people, their ability to communicate with others is extremely limited.  Helen Keller said it like this, “If I could choose, I would rather be blind because if I could hear, I could have conversations with the people around me.  I would feel connected to the world.”  Keller attributed her isolation with not being able to hear.  Interesting food for thought.

There were so many things about blindness and vision-impairment that I was completely ignorant about before being catapulted into the vision disabled world,  such as canes being excellent tools for impaired individuals who have a good deal of sight remaining and how impaired a person with compromised eyesight can actually be.  Also, along the lines of the definition of the “legally-blind”, the idea that blindness comes in degrees.  Actually, sighted comes in degrees as well.

Living in the state between fully sighted and fully blind is a unique, perplexing and often frustration “middle”   No doubt, some sight is better than none.  I doubt anyone would disagree with this.  We are grateful for the eyesight that Mandy has and the prognosis that vision loss will be later and more gradual than most others with her retinal degenerative condition.  Mandy has a condition called Leber’s Congenital Amaurosis (LCA) which is technically a form of RP.  She was diagnosed at age five (THAT story is for another time).  The condition is degenerative, progressive and currently without a treatment or cure.

Let me try to describe the challenge and frustration of this “middle”  Part of it is that her impairment is not a stable one.  We have met other young persons with vision impairments who know that their condition is permanent but static.  For example, those with premature retinopathy or albinism, they know the extent of their impairment and can become adjusted to it.  Even those who are totally blind know what they are facing and can get going with adapting and moving forward.  Although difficult and grievous, there is less “unknown”  This is said in no way to minimize other people’s differing painful experiences.   The point is that for us, this middle is fraught with challenges and frustrations, not least of which is the not knowing.  The not knowing when, how, or if there could be a chance for it to be avoided?  Trust in The Lord does not eradicate fear.    

Other examples of this distressing middle include both keeping up with research and trials on possible future treatments while also planning for Mandy to be ready for a dark world.  This middle involves both participating in fundraising for the search for a treatment or cure while also supporting Mandy in learning Braille, independent cane travel and other compensatory skills.  At times, I find my head spinning trying to make time for both reading and study to keep up on the research, trials and discoveries doctors are making worldwide and the investigation and search for helpful tools, programs and other opportunities to help Mandy prepare for vision loss.  It can involve helping people who think Mandy is more capable/less impaired understand that she needs support, help and compassion.  Other times, sometimes later in the same day, it is helping people who think she is less capable/more impaired understand that she is not without sight and can do things independently which they might not realize.

Sometimes there is a desire, either by Mandy herself or Mandy’s dad and I, to underplay her challenges.  This is when we present it more as, “she has a vision impairment” going on to describe that she needs a lot of light, some additional acclimation to new areas and some occasional support.  These are often things like new programs/camps who are not affiliated with the school system and not connected to IEP services.  They are usually situations when Mandy is able to have social experiences with peers and she does not want to stand out.  There are other times, however, when we really want to drive the point home that Mandy is impaired and has needs which may not seem obvious.  This is when her special needs are presented as that she is “legally-blind”.  Perhaps this sounds like manipulation.  I guess technically it is.  It is, however, with the motive of helping to find a good balance between Mandy feeling comfortable and independent while also making sure she is safe and that her needs are understood.

When people notice Mandy at times when she “sees” particularly well, they don’t realize that a combination of ideal factors, some we can control/influence and some that we can’t, make that possible.  When at her best, blending in with the other kids and not appearing impaired at all, chances are that most of the following are true: she is well rested; she is in a good mood; it is early in the day; she is in a comfortable; familiar or highly motivating environment; she has not had an especially visually challenging day so far; and there is a good deal of natural or fluorescent lighting..  If a few of these factors changed, you’d be looking at a girl feel her way around, bump into things and get frustrated.  If it was bad enough, she would appear completely blind.  So, despite what usually is or seems to be minimal impairment, a good of planning, anticipating and micro-managing has been done over the years, especially when she was younger.

This leads to the last aspect of raising a partially sighted (partially blind) youngster which people may not realize.  Often times, more times than not, teaching Mandy everyday things requires virtually the same strategies, techniques and patience as it would if she were totally blind.  Those of you who have seen her in action may find this hard to believe, but it is true, especially when she was younger.  Vision-impaired people, particularly youngsters, don’t “notice” the things we sighted people do.  Mandy has never been one for details.  She literally sees “the big picture’ and tends not to notice the trees in the forest.  So, despite having a good deal of useable vision, it doesn’t cross her mind to use the effort which would be necessary to watch me fold the laundry or  unpack and put the groceries away.   She doesn’t naturally notice and it is not enticing enough for her to choose to notice.  Therefore, EVERYTHING NEEDS TO BE TAUGHT.  She has to be shown, with a good deal of creativity, effort, patience, and sometimes, repetition, to do everyday things most children pick up naturally.  

I demonstrate this in the next post entitled, "The Jelly Jar"

Teetering Between Pregnant and Not Pregnant: Miscarriage #1 ~ IsabelRose

 "Would you know my name if I saw you in Heaven? Would it be the same if I saw you in Heaven? I must be strong and carry on 'cause I know I don't belong here in Heaven" The familiar, baritone voice of Eric Clapton heard and recognized despite playing only faintly in the doctor's office waiting room that day. That dark day. It was a cool, misty September morning with a mix of sun & clouds, as if not able to make up it's mind. The poignant song, written and sung by a grieving father, filled the stagnant air in the stuffy, gloomy place. Overhead music, is provided to create a relaxing waiting room environment, is it not? I was anything but relaxed. The state of calm intended by such efforts was lost on me. Instead, the questions in my head were reverberated by the singer. Strangely, a degree of comfort was sensed in the spirit of commiseration. The music descended from directly above our heads, as if from heaven itself.   

The booming voice of the receptionist abruptly broke my preoccupation. I could hear her speak, but the words weren't registering at all. The soft yet resounding music kept begging for my attention, as if needing to be heard. Thank God Scott was there. He did the listening and most of the talking. I tried, but in the foggy, numb state I was in, it was more like I was watching it all happen. In a dream-like state of nothingness, I dutifully followed my husband into the doctor's large cluttered office. I sat in a stiff brown chair a good distance from the only other seating choice for Scott. I don't remember much. What was going to take place was explained. I allowed myself to zone out and let Scott assume the responsibility of remembering and asking any needed questions, which is not like me. I heard "uh huhs" and "I understands" while feeling like a third person looking in or, like I was watching a movie,  Funny how the shock and impact of sudden grief can transcend time and place.  

We got up out of our chairs and I was instructed to provide a urine sample. "What the heck do they need this for?" I thought, "We know I'm pregnant and we know the baby is not alive" Reluctant to leave the comfort of my husband's side, I became more conscious of my surroundings and of what was going on. Walking down a seemingly never-ending long hall to find the restroom, I observed the old, worn dark brown walls; ugly, depressing wallpaper, chipped paint and nearly no wall hangings. Was my grim perception of this entire office colored that much by my current state of mind? Was this intentional? Were choices fashioned to match the mood of this man's specialty? Why did they pick all of this darkness? I'm not sure if the somber decor made me feel worse, or if matching the tone of my state of mind was in fact validating. I don't suppose bright sunshine and cheery flower designs would have made sense. Sigh....... Oh, what these walls have seen, their darkness screaming out dread and loss.  I entered the narrow dank restroom to provide my sample. The room was beyond dank. It was downright dreary. Dark thoughts passed through my mind, as they had over the last few days. My thinking just wasn't right; wasn't me.  Hormones, unmedicated narcolepsy and devastating heartbreak severely clouded my mind. I recall looking through the hazy narrow window on the restroom down the three floors to the parking lot. "They really shouldn't have an office like this on the third floor." I thought, "I mean, they send someone like me in here with this window? It would be so easy to unlatch this and just jump. They should at least have the windows more tightly secured" I was in no way suicidal, which makes theses thoughts, which seemed perfectly natural and reasonable at the time, all the more haunting.   

I really had no idea what to expect from this appointment, I just knew that we were meet today and tomorrow go for the D & C.  What a strange name.  So many medical procedures have strange names.  Dilation and curettage.  Basically, it is opening the cervix and cleaning out anything inside that is not supposed to be there.  Done for many reasons, it is often associated with miscarriage (miscarriage, another bizarre word) and abortion. A curette is the instrument used to do the cleaning. At first when I heard this word, all I could think of was something cute.  A curette. It sounds like something cute and nice and pleasant. No, it is for scraping, and in the case of miscarriage, this means scraping out and removing your dead child. I say it with striking blunt abrasiveness precisely because this is not in any way shape or form what people want to hear but it's the truth. It's something many women endure and go on to carry daily in silence and isolation. The curettage part is actually the easiest for the recipient. I got to sleep through the ordeal and wake up to the offer of a single Percocet before leaving. Accepted, thank you very much. I was not in much physical pain, but I took it anyway. I see why people turn to substances, particularly narcotics, to not feel.  It works, sort of, for a while. The dilation, by contrast, was no picnic. It is hard to explain. It felt kind of like multiple long thin needles being placed throughout the inner walls of my cervix.  At first, they stung a little, like a cut being cleaned with hydrogen peroxide. Then it stung a lot, then more, then it burned really REALLY bad with simultaneous mild contracting. Scottie held my hand and felt me squeeze harder as each wave of discomfort intensified. I saw how helpless he felt. An involuntary tear streamed down my left cheek, escaping the others I was holding back. The stun of the burn allowed it's release. The stun of the burn melted my defenses and numbness. Our baby is gone but still inside of me. Lots of cramping took place throughout the rest of that day which helped take my mind off of the emotional pain.  This was a sign that my uterus was opening in preparation for the procedure. I already knew what childbirth contractions were like and these were strangely reminiscent.  

The next day at the hospital was a blurr. I only unmistakably remember three moments from that day. The first was when the anesthesiologist dutifully asked me what procedure I was having done, to which I answered bitterly, "fetal demise" echoing my care providers and cynically validating the medical dehumanization of the event. Then, having already received an initial dose of anesthesia, I remember that while being wheeled into surgery I involuntarily muttered, "Bye bye baby.  Bye bye baby" God provided an angel of support and encouragement in the form of a nurse who, having overheard me, tenderly pressed my forehead and said, "You will always have your baby in your head" then shifted to my chest and added "You will always have your baby in your heart". The physical sensation of her gestures felt intense, likely heightened by drugs and emotion. I wish I knew who she was. I would thank her. I wonder if she has any idea what that meant to me. 

 "Beyond the door there's peace I'm sure; and I know there'll be no more tears in Heaven"  

Teetering Between Married and Single: Divorce

Ugh, divorce. It was a long time before I could comfortably say, "I'm divorced".  My divorce took place back in the mid-90s, nearly eighteen years ago now. It was undoubtedly the defining experience to burst the illusionary bubble I had unknowingly carried all of my life up until that time. There was a life I was certain that I would have and it definitely included "'til death due us part". The end of my brief three year marriage to my college sweetheart, my first love who I had been with just shy of ten years, was without a doubt, the decisive, sudden, pure gut-wrenching and heartrending blow to my naive belief in "happily ever after" 

"You have the sweetest boyfriend" I heard repeatedly through our years of dating.  Showered with attention, affection, cards and flowers, this man beamed and could not contain tears on our wedding day.  The known "nice guy" left our marriage in a way many had difficulty believing.  I accepted the lack of closure a long time ago, but it is still hard to believe.

After months of devastating "just get through the day" grief and blaming anger, I came to a crossroads: either I become bitter, untrusting and cynical or, I choose to release the pain, surrender the "need" for closure, forgive and open my heart again.

I chose the latter.  The Lord forgives me, so I must forgive others.  An unexpected and pleasant byproduct of forgiveness, God's gift, I am certain, had been a significant fading of the bad memories and a stronger preserving of the good ones. 

I had the desire to write a poem about the rise, life and fall of my relationship with Andy, from dating through marriage and on to separation and divorce.  When I finished the poem, I knew for sure that I had arrived at a good place of healing with this part of my past.  The entire poem flowed out of me with almost complete ease.  

Seventeen stanzas to represent nearly ten years of friendship, love, loss and abandonment.  My ex, Andy, my first love, my former best friend who will always hold a place in my heart.  Like the death of a loved one, the grief is never completely gone.  This poem did, however, show me that the majority of my grief was in the past and that most of my healing was done. 

Raggedy Andy

(Written late 2010)

Raggedy Andy,

All tattered and torn

Hand-me-down clothing

Looked shabby and worn

He didn’t have much,

They didn’t look twice

Modest belongings

Would have to suffice

He didn’t complain,

Had no need for more

Humble and kind,

And sweet to the core

She tried to resist him

Her heart feeling fear

Sensitive and gentle

He grew very dear

Raggedy Andy

Did catch her eye

She liked his simple demeanor

So rare in a guy​

She made him feel wanted

Like never before​

He sensed her approval

Admired for sure

A first love…

A wonderful romance…

A beautiful friendship…

A magnificent dance

Yet Raggedy Andy

One day discovered

Something was missing

But what, he wondered

He wanted more status ​

He wanted more stuff

Being her husband

Just wasn’t enough

Greedy, insatiable,

Excessive and vain

She finally saw

He would never be the same

Raggedy Andy

Was ragged no more

Being with her

Became such a bore

Now Andy was

Snazzy, haughty and stunning

He also thought

He was really quite cunning

Settled down

He did not want at all

A cheatin’ scoundrel

Will eventually fall

Raggedy outside

With the inside so real

Was what had once won her

Her heart did he steal

Now raggedy inside

The outside looks striking

His heart has grown hard

It’s not to her liking

​ 

He no longer wants her

He has to move on

She’s better without him

It’s best that he’s gone

Raggedy Andy

Took a new bride

Maybe she'll find

More than stuffing inside.

I am happily remarried and have been for sixteen years now.  I do not regret marrying Andy.  I loved him deeply and intended to keep the vows I made.  When we give someone our heart, we give them the opportunity and power to break it.  The only foolproof way to avoid this is to withhold giving our heart.  I considered it for a short time.  It took meeting someone whose heart went through more breaking and aching than mine to open me to take that risk again.

Blessed Disillusionment

No silver spoon, no picket fence.

A humble home; it just made sense.

To have and to hold. they pledged one day.

For better or worse, they both would stay.

A mom and dad; two kids (no dogs) 

Dad worked hard, had two jobs.

Mom kept house; worked part-time

Clipped coupons; watched every   dime.

School, chores; homework too; then we'd play outside.

Extracurricular activities; the mall, if we could get a ride.

Mom and Dad hardly ever fought but surely they had their woes. 

If they had a lot of stress, they fooled me, I didn't know.

Never expected a lot of things like big vacations and fancy stuff. 

Did just fine with what we had

Enough was just enough.

Life would surely have struggles and problems, of this I was well aware.

But the ones I had when I flew solo, for them I was not prepared.

I thought I'd have what my parents had, of this I wrongly believed.

I thought vows were unbreakable, on this I was deceived.

From that moment when my wedded groom picked up and walked away.

I learned that every man was not my dad, some men just do not stay.

Life would not go as I had planned; this lesson hit real hard.

Maybe I just trust too much; must be on my guard.

I went forward from this heartbreak to never be the same. 

I decided somewhere along the way no point in assigning blame.

The illusion of life like I had known, now broken and shattered and burned.

The life that I was going to have would be built on all that I had learned.

What did I learn? Well you know what.  Just ask Gilda and Lennon fans.

Life means not knowing and about what's happening while you're making other plans.

So faith in God and those I love and finding joy wherever I can. 

Doing my best, showing His Love and leaving the details in His Hands.

Try not to sweat the small stuff 

Expect what can't be planned.

Pain will still be painful

But joy will be more grand.

The Middle

       The middle.  For me, thinking about it or feeling to be in it have largely become commonplace.  In my job as a professional mental health counselor, I often attempt to help guide people from less functional and more problematic extremes (e.g. aggression or passivity in communication) to healthier, more adaptable attitudes and behaviors somewhere closer to the middle between those two extremes (e.g. assertiveness).  In my personal life, however, the concept of "the middle" is, and has been, much more complex and elusive.  On the one hand, the middle is good, adequate or at least preferable to the alternatives.  For example, being in the middle class, somewhere in the median American family income means we are not homeless and do not go hungry.  Having more might be nice, but the middle is more than sufficient.  In other situations, however, being in the middle is quite undesirable.  Whether it is being in the middle of two warring family members or trying to make a decision between two equally disagreeable options, some middles are uncomfortable and even downright painful.

       I often feel that I am attempting to escape a middle where, by involuntary inclusion, I feel stuck.  Or, that I am hanging in the balance in a limbo-like state of "maybe, maybe not" or "wait"  I am referring here not so much to typical, natural  transitions (e.g. kids moving out, aging parents) or the state we often find ourselves in when we are attempting to make a change in our life (e.g. getting married, apply for a new job).  Those are tough and stressful enough, indeed.  The events and circumstances I am speaking of here, nevertheless, are ones which are not by our own creation and, without a doubt, not expected.  They keep me landing in this wearisome middle when a definitive "yea" or a "nay" would be preferable.  There is a unique agony in limbo.  What starts out as a potent sense of hanging on for dear life hoping for the desired outcome gradually, insidiously morphs into the need to know born out of desperation and often, exhaustion.  A point comes when the loathsome final blow is preferred to ongoing, seemingly never ending  indefinite suspension.  Relentless hope turns to weary surrender.  The relief can come as a surprise, such as when I finally accepted that my brief marriage to my ex-husband, my college sweetheart of nearly ten years, was truly over.  The simultaneous experience of devastation and relief.  An end and a beginning.  It is nearly impossible to explain. 

       I didn't really start consciously thinking in terms of 'the middle' until my now dear husband of 16 years, Scott, labeled our seemingly frequent unwelcome, emotionally draining and usually painful circumstances as such. The "almost but not quites", the "maybes but not yets" and the "hurry up and waits".  "Once again, we are in the middle", he would say.  This is especially bothersome and heartbreaking when a potential blessing we weren't even seeking gets dangled in front of us, like the proverbial carrot, only to seemingly be snagged away just as we go to excitedly reach for the unexpected treat. A tease of sorts. 

       A spirit of gratitude does help.  My family and I, husband Scott and 13-year old daughter Mandy, are committed Christians.  I believe in a loving God who has His Hand on me and is aware of my sufferings.  He allows them and sustains me.  I trust Him.  Still, as a therapist, I am not inclined to spiritualize away the reality of my difficulties and subsequent feelings.   Many a frustrated Christian has sought out counseling simply because platitudes and bible passages were not what they needed.  Although true and ultimately helpful, what they needed was someone to acknowledge their pain and be able to sit with them in it.  

     So, I praise and thank God for all of the mercy, grace and favor he has granted me.  As for my own challenges, losses and disappointments, in addition to loving support and time spent periodically seeing my own therapist, one thing that really helps me is writing.  Sometimes I write about what took place as the situation unfolded but I more often write in other forms, such as a poem, or in a third person narration.  I enjoy writing and have found it not only assists in my grieving, healing or decision-making process, it also frequently cues me to important details I might not otherwise be aware.  For instance, when I have significant difficulty writing regarding something I truly want to write about, it usually means there is something crucial getting in the way, unforgiveness, unspoken words, misunderstanding or that it is either too soon to write or that I need to approach it from a different angle.  On the flip side of that, sometimes the words pour out of me, the rhymes flow easily and I feel tremendous peace at the end.  This usually indicates to me a sense of closure.  Any work that was needed is likely done  and I have found peace and acceptance with the situation. This is a marvelous and liberating feeling. This happened when I wrote a poem about the rise, life and demise of my first marriage.  It was a surprise and really moved me along in my healing process. 

     The middle.  The uncomfortable, uncertain, sometimes grievous, sometimes disappointing, always annoying middle.  Regarding our legally-blind, vision-impaired daughter, it's that she's not blind enough to be blind, but not sighted enough to be sighted.  She is not impaired enough to get treatment, not well enough to not need it.  Two lost pregnancies meant being pregnant enough to have created new human beings, not pregnant enough to meet those human beings.  The upcoming posts are poems, stories, thoughts and humor from the vantage point of life in the middle.  My life in the middle. Healing, humor, frustration, loss and faith will all be embraced, These will not necessarily be shared in a chronological order, or any order at all.  I believe whim and The Holy Spirit will be my guide. 

    These are my experiences.  Moments.  Weeks.  Sometimes  years, teetering on the brink of the middle.