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Archive for August, 2011

Quilting a Life

I wish I could go into details but it really isn’t a good idea

but between April 1st and July 6, 2008 my world, as I knew it unraveled.

A whole lot of prayer, waiting, watching …
and I see the scraps of fabric being knitted together again … what this tapestry will look like a year from now, I have no idea ..

I’m going to compare this to the making of a quilt, something I know absolutely nothing about …so forgive the analogy if it doesn’t pan out in the end. The way I see it:

March 31, 2008, my life was this wonderful quilt, cozy, warm, in need of tender loving care, maybe some mending, certainly a good cleaning, but all in all, quite functional and protective. Some fabrics that are too heavy, some too lightand, some colors clashed (even possibly a swatch of blue that had worn to an odd shade of purple here and there)all quilted into a pattern that was a bit chaotic, but not all together unpleasing.

April 1, 2008, in what I thought at first was a seriously bad april fools joke turned into a heartbreakingly real scenerio .. the thread started to unravel.
April 6, 2008, the worn out threads completely came undone …

I still had my quilt, in the shape it had been in, but not much was holding it together ..

June 15, 2008, someone came in and started to disassemble the quilt

July 7, 2008, someone came in and threw all the disassembled pieces of fabric, thread and flinging it into the air for it to land quite unceremoniously in a mess that looked like a tornado had torn through.

Then, the process of figuring out what to do with these scattered pieces began …

First, the sorting, what fabrics go with what .. weight, color, type (cotton, wool, linen etc)
Second, picking up the thread that once was so secure and now in scattered, useless pieces all over the room and with a bittersweet disposition, threw them away.

Third, the process of laying out the fabric, to make a quilt .. only the fabrics don’t all match, so maybe this should make a set of smaller quilts. A lap quilt for each of us (Husband, myself and 2 sons) So sorting them again and laying them out into their individual quilt patterns.

Fourth, the process of picking thread, not just any thread, but the right color, the right weight, the right strength that will hold this quilt for all time.

And now we get to the process of the re building .. one by one a swatch of fabric being secured to the one next to it … and the healing begins …

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If you could …

As a way of getting to know you ..one professor asked if we could change 3 details about our lives what would it be? Each one must have an impact …

My first thought was, of coarse, my health. To have never been sick, to be blissfully unaware of what it means to not know if tomorrow would come …
Then thought of that fateful decision to not take algebra at 15 *smackforehead*

Then I thought of my children, yeah, even with all they’ve attained, if I could make them always have been healthy, I’d do that, in a heartbeat. Yes, my life would be on a different path, but that’d be ok. I’d have found something else to be passionate about.
Then thought about the loss of my daughter (she’d have been 23 yesterday). I am so grateful for my nieces ..but my arms will always ache for my daughter.
Then thought about my step father’s death. My faith carries me far. I believe the verse that says all things come together for good … but it will be heaven before I can possibly understand how his suicide left me better off.

Then thought about my eating disorder … oh how different my life would be …

Then thought about moving to Pueblo at 14, and Tulsa at 17 ..and the dramatic upheaval that brought to my life ..

and when it comes down to it …
except the death of my father and my daughter and the health of my children … the rest … I can’t say I’d really change … even with the three things I’d change everything that has happened to me, good, bad, indifferent has added up to having me in school right now
with a goal
a dream
a determination
and passion that would not have existed without the mountains and the valleys …
What would I change? I’d have my dad’s arms around me, and my arms around Jessica’s … and my children would never have known the pain they have … the rest, is who I am.

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When you wind up in a situation like we found ourselves in, you wind up with quite the collection of doctors. I grew up in a community of 800, 3 doctors and we knew all of them. While you could go to any of them if you chose, they cleverly devided the community and which one you initially went to was based on your location in the community. But they all covered for each other and shared us all for on call, hospital coverage. All of them did things like deliver babies, take out tonsils, etc.
I learned only this week that when my sister and I got our tonsils taken out together, it was literally together. So mom didn’t have to stress for hours as one daughter went in, and then another … they took us back together and 2 docs did it. I was surprised to find out that my Dr D didn’t take out mine, but rather Dr. N.

We lost those docs because we moved to colorado.
I don’t remember any docs in the 3 years we lived there.

We moved here and I started to see a doctor.
I befriended a new friend at school and we became quite close. She invited me to spend the night and suddenly doctor comes to sit at the dinner table! I wound up being like a member of the family and the nurses got kick out of letting him know that ‘your other daughter is here” when I’d arrive.

Then .. a letter came. He was quitting medicine.
I lost contact with him when his daughter and I drifted apart over the course of early adulthood. She was in college, I was working.

Then I met my husband and went to his doctor. His doctor and I hit it off quite well. We’d be friends in another setting. He was with us through the first 2 years of our marriage and the still birth of our daughter … all seemed normal till just short of my 25th birthday, all hell broke loose and I gave birth to a sick baby and I entered the world of disability. He saw us through multiple hospitalizations, spurred me on to find out what was really wrong with me (because he didn’t know and he did not agree with the neuro that it ‘just’ post partum depression (just was neuro’s word, not PCP’s, he was furious about that). He saw me through the diagnosis of Myasthenia Gravis, the thymectomy, the sick babies .. Benjamin’s autism diagnosis and epilepsy, Samuel’s growth problems, ear problems .. the whole thing. He was there for us in a very tangible way.

Then Benjamin turned 5 and he realized his girls were going to be gone in less than 5 years and we got a letter that said “I’m leaving private practice, I’ve enjoyed being your doctor” (ours came with a personal hand written note that was quite nice).

So, I moved on to another Dr. Dr C and I hit it off and he and I would be friends in another setting. He was great, we got along, he was smart … he saw me through knee surgery, getting AFO braces, some pretty serious myasthenia crisis’ (that he helped with in conjunction with my neuro) and he was there … as gentle as could be with the eating disorder could no longer be ingored. He gently forced me into therapy. This doctor, I fully believe saved my life.

Then just 6 weeks after I got into therapy “I have enjoyed being your doctor, but I have to take care of my family.” They were moving to Texas to be near his wife’s family because they needed their support, one of their kids had been diagnosed with a disability. How could I begrudge him that?

The doctor who took over from him was a female. I’d historically not gotten along well with women, but he encouraged me to give her a try. I loved her. She found my lupus (which had been suspected for 10 years, but not found) but that’s another story. She encouraged me to get a breast reduction which I’d desperately wanted but assumed was ‘elective’ and wouldn’t be done with myasthenia. She then went to part time to spend more time with her nephews. Then she got pregnant,she SWORE to me she was coming back

yeah huh …any woman going part time to spend more time with nephews is not coming back after she gets her own little one in her arms (that took 4 years to get pregnant with).
She didn’t.
The next one …went part time ..then quit to get married
The next one is great … but she recently went part time. ( we have gotten complex about this a long time ago. I think we wear out doctors).

We had a dermatologist ..from the time Samuel was 3 months old and the doctor found a ‘funkyish’ mole on my arm. He saw me, he saw Benjamin for his excema and Samuel he saw monthly for 6 years for treatment of warts that would not go away! (they did, but that is also another story)
Samuel turned 16 and Dr. W went to teach Medical School in Texas .. who can begrudge him?

I wrote all this to say … I’ve had a lot of doctors leave and I know the decision is never easy. There is usually a few moments of panic when there is a good relationship …then we wish them well and get to know the new one. The guidance and care they gave has never been forgotten and will always be appreciated.

Doctors lives change from time to time
family needs
financialneeds
fatigue
The list goes on and on … and they have to leave … and you know what, it’s OK. We wish them well and use what we learned with them to help to build the relationship with a new one.

I wrote this because a friend, not my doctor, is moving on, and I can hear the pain in her writing over this obviously difficult decision. She will leave, she will be missed, but she will be remembered fondly by her patients and then they will use what they learned with her to help them in their new relationship with a new doctor.

Life changes and we all change with it.

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One thing the internet has brought has been the renewal of friendships. Occassionally, it reminds you why you lost contact .. but mostly the renewals bring a memory of laughter and love, never forgotten .. but sometimes rather dusty.

Recently, I got onto a FB web page “you know you’re from Mariposa if” so, being from Mariposa I joined and I learned a few things about life in the town I so treasure ..and most of that was that others treasure it as deeply as I. Bullies grow up and sometimes they outgrow it, not so much in others.

The other thing I learned … is we don’t all make it.

Last November, I was saddened to learn of the sudden and unexpected suicide by one of my dear friends from high school, so dear, my son was named after her (Sam .. he was Samuel)
And last night, my dear best friend from 1st through 8th grade passed away suddenly and unexpectedly also in November, due to a blood clot .. 45 years old

We all know that life is a cycle, birth comes and death comes on a regular basis … and it can happen at any age.

I am, as I write this, talking with her sister, another dear friend. We are learning how our stories didn’t vary that far despite the miles and years … we’ve both lost loved ones, we both lost a daughter …we both have grieved the death of my beloved step father. She still has a toy he made her when she was 6, it sits on the hope chest that had been bought for her daughter. They make her smile …they reminder that she was loved .. that she has loved .. and always will be and always will have. I wish time could be turned back so I could just to have one more conversation with
Sam .. and Lisa .. tell them they meant something to me … and always will.

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I’ve been thinking a lot about what it is I want to convey when I finally finish school and can call myself a therapist.

What is it that is my drive? What is it that is so important to put myself through the chaotic world of education?
Why am I willing to challenge everything I’ve ever thought, felt or believed? Why do I feel the need to become as mentally healthy as I can and push myself beyond what has been my very carefully constructed boundaries?

My sister, that I posted about yesterday, said something about my determination. I reminded her that A) we had the same Daddy and B) what other choice is there?

Right before we got disconnected due to a dead battery, she said “we could have dived”

True .. we could have chosen to not face the challenges head on. We could have let dispair take over. Who would have blamed us?

I don’t know enough of her story, but the years of raising my children, for the most part I would not describe as me in a state of “Thrive” but rather “Survive”

And that … that is the key.

With the proper support I just may have been able to do more than survive. When more support was there, I did begin to thrive.

And that is what I want to do. I want to be the support to others who are trying to choose between dive and survive and help them to realize there is another choice: THRIVE

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Sisters

I see other families who are close, never are far apart for long periods of time. They remain close even if they don’t live in the same area of the world. They have family reunions, and talk on a regular basis. Holidays are filled with large groups of people, lots of love and joy (and occassional heartbreak).

I don’t come from that kind of family. One sister lives just 2 miles away, and yet, we rarely talk. The last time we spent a holiday together my youngest, 19, wasn’t even born yet.

I have siblings that I’ve lost contact with and haven’t spoken to at all in my adult life. Others just here and there. I have 3 brothers and 4 sisters. One brother and one sister have passed away. One wants nothing to do with me (because she’d have to tell her children that their ‘grandfather’ (her step father) isn’t their biological grandfather and then she’d have to tell them that she lost her father through suicide). Another, I’ve always been connected to even though because of financial constraints, we’ve lost touch from time to time. A brother, I’m very close to, he lived with me from the time I was 1 to 4 and we’ve always stayed in contact. He comes to see us every couple of years.

Last night, the phone rang. It was the sister who I share a close connection with. We last talked when I called to tell her that the doctors had done an MRI on my son and found that his brain was underdeveloped. She held me (emotionally) so close and because of her, I knew I could do it.

Then … therapy, doctor visits and medications took over my life.

I had no idea that she would enter the same world as I in just a few months time as her son, just a year older than mine was diagnosed with aspbergers.

We didn’t get to talk long last night, the battery died … but I got to hear her voice, and hear her love. To feel that closeness with a sister again.

It is amazing how love can transcend over time, abssence and loss and yet remain just as strong.
I heard my daddy’s voice in her voice. Both in passion and timbre. That was quite the experience. I’m so looking forward to that connection again. I’ve forgotten how special a sister can be.

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progression …

This has not been the best of days, in addition to the absurd heat out there (112 today, calling for 114 tomorrow), I took my husband to the ENT and then had a discussion with both my husband’s and my mother’s neuro. (my husband’s is also mine and he (DH) opted for me to talk to Dr M rather than himself)

Mom’s neuro was an interesting conversation. She’d gotten into a conversation with my mother about a former job. She wasn’t sure what to think about it because the woman she knows would never have been able to survive that job, much less thrive as my mother said she did. Yet, my mother is insisting there has been no functional changes and my sister agrees. To me, this just proves that my sister has no respect for my mother … and never has. She has always seen herself as ‘better than’ the rest of us.

I told the neuro my opinion, mom has lost SIGNIFICANT functioning, and at one time was aware she was changing …that was about 10 years ago. During this time she had a couple of minor strokes. But she has had a dramatic personality change as well as a severe decrease in functioning. While working on her masters, a classmate had to give an IQ test, she used my mom as a guinnea pig (which she tested high enough the professor decided to regive the test to verify). She tested in the 150-160 range.
In 2004, she was tested again .. a full neuropsych battery. The neuro psych ignored everything I said about changes in her functioning, comprehension and loss of social skills and believed mom when she said she’d always been ‘this way’ and it’s ‘just ADHD’.
Her IQ was 103. I asked for a retest and it was, by another psychologist who didn’t do the full battery, just the IQ and she scored 98.

This to me sent off all kinds of alarm bells, but only my neuro (hers at the time) agreed. So, my mom did what most in denial do and changed neuro’s. Her neuro says she’s seen a decline of functioning in the last 4 years and is quite concerned. I told her that I’ve been concerned for a decade aned it’s quite the relief to have support.

Her official diagnosis is: Dementia NOS … not much help.
I know nothing about this diagnosis, but it is quite the relief to finally have a doctor acknowlege that this once vital, active, and highly intelligent woman who can’t understand simple directions, drives a car into a public library (literally) and then giggles because no one got mad and says “it was obviously not a problem, because no ne was upset with me.

Then there is Don. He’s been having increased numbness in his hand, the other night he dropped a hot cup of coffee as his hand refused to grasp the cup. He’s fallen several times lately, with his left knee just buckling and giving out. (this morning was last fall). Discussion with neuro says that this is the progression of damage we were ‘expecting’ and that there isn’t anything that can be done by doctors in t6his area. Given Don’s unwillingness to go outside of our area to seek help, granted, no one here can even start to fathom what would be involved to really give any kind of help.

The symptoms he has, Dr. M says is consistent with further compression on the displaced spinal cord at c5/c6 and c6/c7. There is also a visible increase in scoliosis curve from the last measurement (no one has ever told us what degree of curvature that he has. It didn’t occur to me till after I hung up that ‘last measurement’ meant that he’s (neuro) has the number).

His hearing is shot, but that’s genetic/age. His mother started to wear hearing aids at 52 and he’s 55. His loss is ‘significant’ which I knew that … been trying to tell him for several months .. I listen to the TV at a 36 (sound range on our TV is 1 to 100) he at 76. (then wants me to carry on a conversation OVER the blaringly loud TV.) He swears that americans have taken to the habit of mumbling .. no, not anymore than has been …
The hearing loss is annoying .. but not significant.

He needs sinus surgery and there is one where they put in a ballon and open the passage ways. It can be done with a local and takes about 90 min to 2 hours. It’s not Mandetory, but would make his life more comfortable … he’s thinking about it.

Is today over yet?

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