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I am a terrible blogger — there was a time I was fairly good at it. I guess my writing skills are being tunneled in another capacity — due dates & grades.

I’ve been at my job for a little over 2 months. 2 months ago today was my last blog post. In the last 2 months I have seen heart break, healing, tragedy and disgust — all in ways I had no idea the depths of which I could feel.
My job is challenging and has put my ability to be flexible to the test. I’ve been late more times in the past 2 months than in my entire adult life. The panic is lessening — and thankfully it’s not transferring over to my personal life. It is part of working in child welfare –things don’t go as planned. I have learned to not listen to others on time perception — some that I work with think 5 minutes means “less than an hour” and if they tell me it will take 5 minutes to get somewhere — it very well could mean 30! By 5 minutes they mean “not long” when I say 5 minutes I mean “5 minutes and 0 seconds.”

I spent 8 years as an assistant to the worship minister at our church — and I had no idea that God was using those skills to lay the foundation for my current job. Not a day goes by that I don’t thank Him for that opportunity. It was every bit a foundation for my current position as my education — in some ways — more so.

Graduate school — wow. We are having our first mid-term tomorrow -(and I’m blog posting -brilliant time management 😉 ) I love the classes –the one that I expected to dislike the most is the one I like the best. I so disliked Personality Theories (both at TCC and NSU) that I really did not expect to like Counseling Theories –but instead I am completely enjoying it. I look at the text books for the 3 classes and wonder what the difference is — my biggest (well, maybe not biggest — most intriguing?) project is a paper on my own emerging theory. My professor says she can see my emerging theory forming. I’m dying of curiosity “JUST TELL ME ALREADY!” I’m learning more about what kind of therapist I do not want to be than what kind I do want to be — the end project should be fascinating.

Family — Don’s health is tenuous at best. He is doing so very much to help me, support me and make this new lifestyle work. It is incredible to think of where we came from to where we are. I will be forever grateful for him. He’s a pretty good cook too –we knew he could bake, knew he could cook but he really can. He’s tiring of being the cook and planner –and it makes me giggle –he’s starting to understand my disdain for the question “what’s for dinner tonight.” I will admit to some smugness over this –but we both have a good sense of humor over it.

The boys are both living their lives. Benjamin is truly searching to find his own place in the world and what God has for him. He has always had a unique sense of where he belongs in the grand scheme of things — it is fascinating to watch him grow and develop. He has his Dad’s sense of logic (this is not always a good thing on either part!) and he has my sense of social justice –and these two things often collide within him. Actually, his sense of social justice makes me appear to be complacent and disinterested.
Samuel is working hard to regain the footing that he should have had given his natural gifts. He’s got a strong work ethic and a love of life, humor and decency. I am so very proud of the men they have become. I don’t like everything they do but I trust them to do the right thing. They are remarkable men.

Life is good — very good and I am ever grateful that I am blessed beyond measure.

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Sweet Justice

“I’m at the top of the world looking down on creation and the only explanation I can find –is that love that I’ve found ever since you’ve been around your love put me at the top of the world” — my oldest sister, Cleda, used to sing that song to me when I was a third grader. She was old, really old –all of 13 and in the 8th grade —

I’m sitting at the top of a paradigm shift in my family. After 24 years on disability I have returned to the work force. This is a privilege beyond description. According to the Social Security Administration less than 1/2 of 1% of those on disability ever return to the workforce when they’ve been on it for more than 10 years. The statistics for those on more than 15 years is so small it isn’t even ‘measurable’.
This statistic includes those who use the Ticket To Work program that allows one to work part time while on disability — 

I have sat back and watched the world go by as people complain about

Mondays

Taxes

Work Politics

and I’ve sat and wondered if they saw the world from my eyes would it look different to them? I was a stay at home mom who never made the choice to be a stay at home mom. Quite the contrary — my plan was to be a career woman who had her family as a priority. I never invited autoimmunity into my life — it intruded like a thief in the night stealing everything I ever wanted, hoped for or dreamed of.

Today I start my first full week — and that thief has been sent to prison. It is still very much alive — it just has to return and make restitution for all it has stolen from me. I have won justice. And Justice is sweet.

I do not take this privilege lightly — I value it. I treasure it. I am grateful for it.

Image

 

 

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Actually Walking

friend sent me this video — I’m at about 50 seconds

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Grief and Loss

When I was pregnant I dropped a glass and it shattered. In the process of trying to clean up the glass, I stepped on some and managed to lodge a piece deep into my foot. The doctor said it was too deep for him to retrieve in the office and that it would require surgery to remove. Since it was glass, it is an inert substance and would not cause an infection and would not break down and would likely not cause much of a problem other than discomfort. However, anesthesia would be a serious problem for the pregnancy. So, weighing out risks vs benefits — the glass would stay in my foot until after I delivered the baby in December.

 

When I delivered the baby, he was sick, I was sick and we couldn’t do it because we couldn’t get to it. Then, when the baby was 2 months old I was diagnosed with Myasthenia Gravis and I was told that there would never be elective surgery for me. It is just too risky. This piece of glass in my foot is classified as elective … and so it stayed. Eventually, I learned to walk without putting pressure on the place where the glass was and I pretty much forgot about it except for here and there (usually once or twice a week) when I would step on it and a sharp pain would let me know it is still there. It was a bit uncomfortable if I thought about it, but I was able to ignore it most of the time. But there was this feeling that there was something not quite right with the side of my right foot.

 

It stayed there … and 3 years later it was still there. Not causing an issue but managing to send sharp pain signals to my body every few days when I stepped on it just wrong. Then it started to work its way out .. and as it did it became a bit more painful. In the space of about 3 days it managed to work it’s way to the surface and as it ruptured the surface the pain was sharp and intense. But then — immediately this dull ache that had been there for more than 3 years dissipated and pressure relieved and what was left was little more than what a pimple would have left. In 2 days time there was no evidence of several years of discomfort.

 

This last weekend I attended a seminar on Grief and Loss. It brought up some painful and uncomfortable feelings. It reminded me of things buried in my heart that for the most part sit like a dull ache until something causes them to be hit … and then the sharpness of their pain reminds me they are real … and then they go back to the dull ache again.

 

In the days following my step fathers death there were things said that cut sharp

“he was *just* your step father.”

“God will work things out”

Within weeks I was told

“Get over it already”

one person said “look, he chose to die, I don’t know why you’re so upset, he wasn’t even related to you.”

 

He’d married my mom when I was 13 months old — he *was* my Dad!

 

Years later we were expecting our first child. One day we were told it was a girl. We chose the name Jessica Dawn. A week later — she was gone. Born too soon to survive — and the doctors said I would never have another (they were obviously wrong, but we did not know that yet)

And we heard

“God must have needed her more than you”

“There must have been something really wrong, so God took her home”

“It is God’s will”

“You’ll have more”

 

 

I learned to hide my grief. I learned that no one wants to listen to the tears of a daughter who feels lost and alone — or a mother whose arms feel empty.

 

Suicide

loss of a step parent

loss of a child born too early

 

these are all things that we, as a society do not mourn well —

 

In this seminar there was discussion by the guest speaker about just such grief. It’s called Disenfranchised Grief — a Grief that cannot be openly expressed because the death or other loss cannot be publicly acknowledged.

In today’s world there are many losses we brush away because they are uncomfortable or we think that there is no real connection, no reason to mourn past a day or 2:

Suicide

Still birth

Miscarriage

Step parents /Step children

Cousins (or other extended family)

Deaths due to drug addiction or alcoholism

Loss of a very old relative

The loss of a foster child

Divorce

 

 

 

As the speaker spoke of this … I felt the sharp pain of the losses, sharper than I’d felt in a long time. It felt strange because I thought I’d gained so much healing  — to feel these so acutely was alarming.

Then he said something — and he said it softly and gently “This grief is valid”

 

and it was like the glass popping through my foot .. the sharpness cut .. but then relief .. sweet sweet relief of healing. My grief was real .. and acknowledged by someone who didn’t even realize he was doing so .. he gave it a name. And in giving it a name, he gave it validation and in validation came healing. I will always ALWAYS miss my Step Father

I will always ALWAYS wonder what it would have been like to have been able to raise Jessica Dawn and miss her.

 

but the pain is relieved.

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That was today’s phrase the doctor said. This, what we’re dealing with now, is chronic, long term .. not going away. “It will be like this the rest of his life”
You can’t fix  .. treat … or do anything but watch very carefully that pneumonia’s like the one in June crop up in that very inflamed lung.
You can’t do anything but watch the 2, 3 or 4 hour coughing jags …
Tonight one cough caused his entire body to spasm (most do, but this was particularly forceful) and he went pale and had a hard time focusing .. then a sharp pain … right where the spinal cord is displaced. A rock dropped like a bomb to my stomach …
I’ve noticed some odd cognitive issues … things he should remember  … things that should not be hard to explain but become impossible … telling me the same thing 4 to 5 times then getting mad when I say he told me already  … and furious when I insist he has. It wasn’t till tonight that it occurred he may not be remember telling me  … I need to think about this … is this oxygen issue? Is this just fatigue from dealing with so much? Is this a totally separate issue that has nothing to do with what we’ve been dealing with? Is this just a stress response? I need to pay attention to when it’s happening … it could be sign of infection impending in those fluid filled lungs …

It is far different to know that this was going to happen than walking it out in reality.
Discussion with pulmo again, turned to me .. and my self care …and coping. He suggested that I look at some of the information that is given to families with long term fatal illnesses like Alzheimer .. (I do not think the memory is Alzheimer .. in fact, it’s an issue that hasn’t been mentioned to a single doctor .. his point was .. they have good coping resources for long term unpredictable degenerative issues) Parkinson foundation … there is nothing like Don … so I need to look at illnesses who share characteristics of “unpredictability” “degeneration” “eventual terminal”

He had a few doc appts last week and his mother became frustrated with me. In her whiniest, most “poor me” “dejected voice’ she could muster she said “I don’t know why you insist on making him see all these doctors and do all these things. They tried to force me to do all sorts of appointments, surgeries and physical therapy with him when he was little and I simply would not let them insist his illness got to dictate my life. And look at him, I was right.”

It took all my self control to not say “Had you done the surgeries and allowed the rod to be placed in his back when he was 6 (it was suggested but she refused because the physical rehab would take too long), we would not be here. Had you taken him to the nutritionist and Physical therapist team when he was first removed from the iron lung, his muscle atrophy might not have been as severe … and he might weigh more than 92 lbs. If you had done all those things they tried to make you do then .. we would not be HERE NOW.” But I didn’t. I simply responded with “we all have to do what we think is right.”

 

I start school in 9 days … and I’m scared .. I leave him alone from 4:30 to 10 on 2 different nights a week. I’m scared I’ll be too distracted to concentrate on my studies. I’m also kind of relieved, no, very relieved, to have something else to focus on other than “Is someday really here?” “Is my husband going to die before I finish my degree? and if so .. which degree?” And a few moments of the occasional panic of “will he make it to our 25th anniversary in December.” (this last one is pure panic .. no reason today to feel he won’t … he will probably see me graduate in May with my Bachelors (though Dr’s will not promise me) But the master’s that is 3 years later is seriously in question .. and PhD a couple of years later .. the doctors just frown and say “I’m sorry”

 

 

 

 

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“Someday” is here

When I was 23 I met my husband. We married a few months later and shortly after we married my mother in law told me that my husband was not expected to live to be 35. I knew he was disabled, that was obvious by looking at him. He’d had polio as a child and it caused significant damage .. but I did not know that it would effect his life expectancy. He was 32, so 35 was a huge shock.

We went on about life and would on occasion talk about the difficulties and possibilities. We had 2 kids .. .both of whom had significant medical problems. I became ill when my first son was born and for a long time, he was *my* caregiver while I was caregiver to our children.

When my husband was 41 they did not think he would live another year. But he did. When he was 43 we learned that he had, as a complication of the scoliosis caused by the polio, displaced spinal cord in the c5/c6 region. That they said, would cause problems, some day.

By the time he was 50 he was as healthy as he’d ever been in his entire life. But they said the scoliosis is worsening and that ‘someday’ it would be the beginning of the end. You see, his scoliosis is beyond the ‘life threatening’ level of 100 degrees.

When he was 51 he was playing with the kids on a wednesday morning, took them to school and came back and said “I don’t feel very good”. An hour later he was in an ambulance slipping into a semi colon as his lungs filled with fluid. By the time the ER was able to do xrays his right lung was so filled with fluid they kept insisting he had a severe case of emphysema (he did not). As he spent 45 days in the hospital recovering they did further testing and we learned that the displaced spinal cord was now at c5/c6 and c6/c7 and there is permanent nerve damage due to the compression on the spinal cord. “Some day” he *could* step wrong and his life would be over in an instant.
“Someday” the worsening scoliosis would interfere with heart, lung, liver, kidney function. “Someday” the scoliosis would cause the organs, one or the other, if not all, to start to fail or possibly it could rupture and then he would die instantly.
“Someday” the scoliosis, already incompatible with life would, in fact, prove that it is stronger than his will.

In February he got pneumonia .. and it wouldn’t clear up ..
and it wouldn’t go away
and he coughed
and coughed
and coughed
and his heart went out of rhythm in April and they put him on strong antibiotics by IV while they treated his heart .. but the lungs stayed irritated and full of fluid

and in June he started to cough up blood
and he was placed in ICU in an isolation unit .. and given very strong antibiotics and he improved a bit .. but he still coughed and coughed and coughed. After a week they let him go but did another CT scan a week later and there was no change
a week later
no change
a month later
no change
last week
No change.
And that’s when I heard the pulmonologist that we’ve been working with for 20 years say
“Peggikaye, “someday” is here”
His ribs are pressing in on his lung .. and there is an irritation and it is causing the pneumonia … it’s not infectious so they can’t fight it. They can’t fix it. Because it is the rib moving in on the lung and they can’t fix the scoliosis …
this
is Someday.

But we don’t know how long “Someday” will last … it could be weeks .. it could be months, it could be years .. but we know that someday is here .. and life will never be the same.

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Aren’t You Done Yet?

I keep getting asked “Aren’t you done yet?” or the assumption that I’m in grad school rather than undergrad … so I thought I’d share how I got to be where I am, which is apparently much farther behind than people realized.(this is also completely unedited or spell checked or grammar checked …)

 

In 1982, I was a sophomore in high school and rather stubbornly refusing to take algebra. I had no idea at the time how that would effect my future.I just knew that math was harder for me than anyone seemed to understand and everyone, parents included, thought I was just being lazy. I couldn’t explain how hard it was and how confusing it was. So, I dug my heels in and refused to take it. I took Business Math and Accounting instead.

When I graduated high school in 1983, I didn’t go to college … in part, but not the whole, because I’d not taken algebra.

 

In 1988, I was a waitress. I’d just lost a baby girl, and was told I’d never carry a child full term. I went to work one day and it was a co workers birthday. I’d thought she was close to, if not over, 60. I learned she was only 42. To say I was shocked was an understatement. I didn’t say anything, but someone else did and her response was “waitressing ages you”

The next day we went to get my husband signed up for his fall classes. I mumbled something about what would it take for me to go to school. His head snapped and he pulled me out of the very long line we’d already been waiting for an hour in, and there was well over an hour wait (no computer enrollment in those days). He took me straight to the enrollment office and an hour later, we were standing together in a line to register for classes.

I didn’t know what I wanted to ..but it seemed that education was ‘the family business’ so I majored in education. The plan, at the time was to become a teacher for the deaf.

 

A year later, my first son was born. October 14, 1989 and my world turned upside down. I walked into the hospital perfectly healthy and walked out with Myasthenia Gravis. A neuro muscular autoimmune disease that causes the voluntary muscles to weaken with use. It literally turns your world upside down and inside out as you learn that the more you rest, the stronger you get and the more you use the weaker you get … fatigue is undescribable … and overwhelming.I saw a doctor who told me that there was nothing wrong, stress & depression.. post partum. A neurologist told me to stop being a baby about being a new mother.

 

So I kept trying to go to go to school … after all, the best thing for depression is to keep moving … one foot in front of the other.

 

I took 2 classes the spring of 1990. I got a D in humanities and a C in meteorology.

The following fall, with no further diagnosis besides depression I enrolled in 12 hours

 

Before the end of the semester I was having to leave 2 hours before school, so I could stop and rest for an hour. Then one day, my legs just stopped working. 1/2 to class, I fell and drug myself to the wall, figuring if I waited a few minutes I could get up. I sat there for 2 hours (with students just assuming that I’d been sitting there on purpose ..an odd study place, but not unseen on campus).

I finally got strong enough to get up and went home, having missed my class … and the next day I went to my professors and withdrew. They all agreed to give me my current grade as my final grade, but the 3 weeks between this event and the end of the term, 2 forgot, and 2 gave me a withdraw passing. (the first 2 were an F and a Withdraw Fail).

However, I was too sick, too busy with a sick baby to follow up and make sure the grades were recorded as necessary. I just assumed they did what they’d said and that I had semi decent grades and credit given …shortly after I received a letter from what was then, TJC, telling me that I needed to take my high school math equivalent classes before I could continue. (and said nothing about the current grades).

 

It wasn’t for another 16 months that I would get a diagnosis. By then I’d had another baby and become even more ill. To top that off, my youngest had the same immune system malfunction my oldest had had … and then some. Our lives were filled with doctor appointments, physical therapy and speech therapy and occupational therapy, piles of pills and frequent hospital stays.

 

In April of 2008, something happened. Having tried to do some advocacy for some friends whose children had special needs and having been told for the 4th time in 4 months that “You’re just a mother with no letters behind your name” I got angry and decided to go to school. 2 days later I was enrolled in school for the fall semester of 2008. The first thing they said is “you cannot take any classes unless you take algebra with them.”That was also when I learned the credit for the classes I’d thought I’d been given credit for, I’d not and all those classes would have to be repeated. I was starting as a Freshman, not as a Sophomore like I’d expected, with only 23 hours .. not the well over 30 I thought I had. Plus, the D had to be retaken.

So, 25 years after stubbornly refusing to take the high school algebra, I enrolled in the equivalent of the algebra class .. in this school, it was called Beginning Algebra (a developmental class).

 

I had NO idea what would be facing me, or I likely wouldn’t have done it! Math 25 years after graduating from high school would be hard for almost anyone. I found it impossible. My professor pulled me aside and told me he thought there was something up. He’d watched me work and work. He knew the hours I spent in the math lab, with a tutor and in his office getting help. He’d never seen a student work so hard and get no where. So I was tested for a learning disability in math and I miserably failed the test. I didn’t just have a problem with math, I had a SEVERE learning disability in math.The concepts that others struggle with confused me and there seemed to be no way around it.

I failed that class with dismal 42% but he gave me a D on my transcript because he knew how hard I worked.

 

Fall of 2009, I stated my journey of intermediate algebra which would be far more difficult than beginning ..both emotionally and intellectually. I failed (there really should be a word that stands for miserably failed) with a defeating 29%. I retook it in the spring and worked hard m… but somehow got stuck in an 8 week class. There was no way I could pass it, but the instructor encouraged me to just keep going, because then it would help with the next time I took it. (he was right) I got a 44% this time … So I retook in the fall of 2010 and struggled, worked with 2 tutors and spent a minimum of 4 hours a day on my math, but there were weeks I spent more than 40 hours working on it! And when I got done, I thought I’d squeezed out the C I needed to move onto college algebra.

 

When grades came out, I was stunned to see a D. I contacted the professor who refused to budge from the 69.8% that gave me my D.The school said he had grading autonomy .. and it meant I had to retake it.

 

This also put me behind in my program for psychology … I can’t take Psychological Statistics without college algebra I can’t take Experimental Psych or Mental Tests and Measurements without Psychological Statistics. When I enrolled at NSU, it was on the agreement that by the end of the 3rd full semester (excluding summer or intercessions) I would have my Associates degree and all pre reqs met .. in my case, only the College Algebra. The rules had changed a bit, allowing for Math for Critical Thinking rather than algebra .. but I still had to get through Intermediate Algebra to even GET to the college Math class …

 

So I took it, by itself, in the summer. And eeeeeked out a grade that allowed me to move on.So, this fall, 2011 I finally got into my college math class.

 

Last night, I took the final, having known I’d gotten at least a C … I was ‘safe’.I wound up with a B by the skin of my teeth (400 pts earned a B and I had 401!)

This also means I got my associate degree ..

 

An associate degree in psych is absolutely worthless … but it is a rather solid stepping stone and for me? It means I finished that math!

Now, for spring, I can finally take the psychological stats which enables me to continue moving forward toward my goal towards a BA (expected in May of 2013)

and then a Masters (which, according to plans will start in August 2013)

then PhD ..

 

so, no, I’m not done yet and have a long way to go …

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