Oops, I Did It Again

So....Howdy, friends!
How's life been treatin' ya?
Good?
That's nice.
Here is rundown of what you missed while I was busy:

https://gayandciha.com/tribute/details/3516/Ralph-Wade/obituary.html#tribute-start




And now Claudia and I are living in  Seattle, Washington. I live at Shilshole marina on a boat with Rob, and Claudia is in a nearby nursing home.

 I have met some of Ralph's extended family in Vancouver, Washington and it was fun getting to know his side of history. I know Claudia's well because I regularly had phone calls from my grandma Lennis, who liked to complain that her daughter didn't write or call her enough. Nothing is more fun that being caught between your 70ish mother and your 90ish grandmother, for YEARS while they bicker back and forth about who called who last, and why a letter wasn't good enough for whatever. I had to remind myself they always had that kind of relationship and I wasn't going to change a long set pattern that neither was interested in changing.

Lennis passed away a few months before Ralph. She was 94 when she passed, which is amazing considering she lived in her home, doing her own thing until the end.

When Ralph passed, I was very grateful he did so without suffering, in his sleep. He was in the hospital, but was not hooked up to anything, not even an IV. He was preparing to return to the nursing home the next morning when he fell asleep and didn't wake up. I consider that a huge win for him. I never want another family member to suffer the way Rex did before he died.

Whenever, however Claudia leaves this world, my only hope and concern is that she too, is comfortable and pain free. Life is hard enough without making our exists difficult, especially when there are ways to help that.

Anyway...until then, life goes on, and the Pacific Northwest is beautiful. It is good to be home again.

The 1st Anniversary of My 3rd Life

I realized when I posted pictures the other day of Ralph and Claudia's 53rd wedding anniversary, that I haven't written anything here since early last year. 

How odd, right?
Then I remembered.

Right now, in July, last year, was when I was recovering from this:

I had emergency brain surgery last June to replace part of a shunt  in my head that had failed.

 Luckily, Rob realized a headache I was having was worse than my regular kind and he believed me when I told him to take me to the hospital. Shortly after we arrived in the ER I became unresponsive. The neurosurgery team happened to still be in the building and they cracked my head open in the middle of the night.

When I woke up the next day in the ICU, I had no memory of the headache, the ride to the hospital or the ER. And I was completely high on major awesome drugs, so from my perspective it was not a bad way to almost croak. It was hella less painful than 18 hours of labor ending in a c-section. (Thank you, childbirth for helping me keep life and death stuff in perspective.)

28 years ago, I had a bad headache. Like the nagging kind, that just wouldn't go away. I went to a doctor, who decided I was a stressed college student, wife and mother to then 18 month-old Jennifer. I was 23 years old and in perfect health. Other than the ridiculous headache, I had nothing wrong with me and in fact, rarely even got headaches. I was just a normal, busy young adult.

After 3 weeks of missing work and school, seeing doctors in the university student health clinic, seeing an eye doctor,  and visiting the ER, my headache progressed to the point I repeatedly banged my head on our apartment floor because that actually seemed to help the pain.
 I remember doing that.
Then Rob scooped me up and took me back to the hospital.
After taking another look at me in the neurology clinic, I had an emergency shunt for hydrocephalus put in my head. I was in the hospital for 3 days, then sent home to teach myself how to read again.

A short time after my first brain surgery, my long time childhood friend Leslie, came to visit me. I hadn't seen her 6 years and a lot had happened during those years. Rob and I got married, we had baby Jennifer, and we transferred to BYU in Utah to continue our studies. We had this picture taken during her visit. My hair had grown back enough from surgery that I was able to cut it short without my fresh scar being obvious.

After the surgery, the doctor explained at my first check-up that I was very lucky. In the days proceeding my drama, a nurse at the same hospital went home early with a really bad headache. She took aspirin and went to bed. She didn't wake up. An autopsy showed she had the same thing I presented with days later. Because it was a fresh tragedy in the hospital, staff were still thinking about that when I showed up with my exploding brain.

The surgeon explained I was a walking miracle because I had the headache for so long. After 3 weeks of gradually building pressure, the expectation was that I might not wake up at all after surgery, and if I did, it was 100%  certain I would have permanent brain damage. In fact, Rob was told in the waiting room to prepare himself for the possibility I would require long-term nursing home care.
It was bad.

And then I woke up after surgery and I repeatedly said to everyone who came into my room, "See? I told you I had a headache."
I was such a medical phenom, a parade of medical residents and students came to see me in my hospital room.

 Even though I was only days out of high-risk surgery, my ego was still strong enough that I didn't think to question why a line of perfect strangers wanted to ask me what my earliest life memories were, what my favorite color was and what I thought about the state of politics at the time. Why wouldn't people want to know what I thought about practically everything? I was obviously the most fascinating person in the joint, right?

It wasn't until weeks later, that I figured it out.
They didn't care about me, they cared that I was walking, talking, and alive!

The fact I lost my ability to read like a speed demon didn't bother anyone in the hospital. It took about a year for me to be able to comfortably read with good comprehension. But after that, no problems with my head.

The doctors explained that what happened to me was rare. No one at my age, with no medical history, should have that happen to them. And, they told Rob and I, the average lifespan of a shunt was 7-10 years.  I would have to expect another brain surgery to replace the shunt every decade the rest of my life, and that each surgery was considered high risk.

Oh swell!

I went through it once, and now had a whole lifetime of repeats to look forward to. Goody for me.

But of course, that is not how life turned out.

It took 26 years for my shunt to fail. And in between, I had only had a couple of neurological check-ups, so take that pre-existing condition insurance gurus.

Occasionally during those 26 years Rob and I talked about what would happen if the shunt failed. Depending on the age of our kids at the time, we made different tentative plans on who could watch our kids while I was in the hospital, and how  I would manage my imaginary recovery.It was like a chronic illness was hanging over my head, but I wasn't sick and nothing ever happened. What a way to live.

This go-round, I was out of the ICU in 24 hours and out of the hospital the day after. One night on the hospital neurology floor was enough for me, thank you very much. That place was packed with patients. I had no idea there were so many ways brains can fail.

Once again, at my first post-op appointment, the doctors said I was very lucky. First, I was alive. Second, they didn't have to replace the full shunt, just the plastic tube that runs from my head down my torso and ends in my abdomen. So my brains didn't get scrambled at all and I could read and write and complain like normal with no problems.
Yay me!

Our family hair stylist came to the house and gave me my first post-op hair cut in our living room. She artful did an extreme comb over to cover the back and side of my shaved head. Not too bad at all, I say.

For the first couple of months, whenever we went out in public Rob was on Trump duty (trust me, it was a funny joke back then, before the elections) to pull my hair flap back into place whenever the wind picked it up and exposed my fresh head scar. 

Anyway, here I am a year later and all is well.
Oh! I forgot to tell you the very best parts of last year, besides my head scare:

Rob had serious neck surgery early in the year and I got to nurse him back to full neck function for three months. This is the Certificate of Awesomeness he got from Rachel, his occupational therapist on the day he was done with therapy:

Within 2 months of Rob getting back to work and enjoying life with his new neck, I had this surgery: 

Before 

After

Yep. The fine doctors at the Univ. of Iowa took 7 lbs. off my chest. Hands down, the best surgery EVER. 

Unfortunately,  3 weeks after having breast reduction surgery, my head decided to explode. I ended up recovering from fresh chest wounds, a head wound and abdomen wounds (because they had to open my gut to anchor the end of the shunt tube) all at the same time. I was the talk of the surgery clinic for that day, for sure.

You may find fault with lots of things with our quirky family, but never let it be said we don't know how to maximize our yearly health insurance payment cap. Just think, 3 major family surgeries in ONE year, all under one fiscal payment limit. 

Thank you, 
Thank you very much.  

Kiss, Kiss, all is well.

Happy 53rd Wedding Anniversary!

 Claudia all dressed up and looking pretty.
 Her hat is a designer one, I forget who but it is for sure uptown. 

Ralph showing off the anniversary card from one of his grandkids. 

Ralph and Claudia wanted their anniversary party in the conference room at their nursing home.
 It has the biggest table in the joint. 

Ralph likes chocolate, Claudia doesn't.
One cake for each of them.
Perfection. 

It was a full house for presents, KFC (Ralph and Claudia's favorite) and cake.
So nice to be able to share the joy with family and friends. 

Happy 81st Year Day

Today is my father's 81st birthday. Because he and my mother are devout Jehovah's Witnesses, they don't celebrate birthdays. Ralph  reminds me every year when his birthday is coming, so I can be prepared. My job is to get chocolate cake (his favorite) and ice cream for everyone in their nursing home to enjoy after their supper. Just for fun, not for Ralph in particular. 
NOTICE: WE ARE NOT celebrating my dad's birthday. I am just being generous with his favorite treat. It could happen on any day of the year. (I hope this disclaimer covers me with the Jehovah's Witness Big Guy upstairs. I am not sure what the official procedure is regarding birthdays, but I want to make sure Ralph is in the clear with his God.) 

Ralph in all his 81st year glory.

Cake and ice cream for all!

If you asked him, Ralph would be the first to tell you that he has outlived both his parents ages when they passed, and that he is sort of surprised he made it this long. Not that he is afraid of dying, he isn't. As a religious man, he is comforted by his faith traditions and that is a gift when you live in a place where people slip quietly away, never to return to the dining hall again.

 If Ralph had his way he would be behind the wheel of a RV, living the life of an American wanderer. He isn't so much a tourist, as a visitor. He likes to try new places on for size, moving on when things get boring or annoying. I can relate, I inherited his itch for new sights and sounds. Nothing soothes my soul like a good day trip to see something interesting.

 It is hard for Ralph to be landlocked, without wheels to take him to freedom. The least I could do is bring him cake and ice cream on his most important 81st year day.

Adoption is a Trauma

                     

My brother Rex, with our birth parents, Ralph and Claudia, and Ralph's mother. 

I had a phone call from a woman who recently read Ezra and Hadassah: A Portrait of American Royalty. She wanted me to know she sat down to read it and didn't stop until she was done, 8 hours later. Besides complimenting my writing style, she told me she was an adoptive parent of two adult children, and that after years of struggle, she has come to the conclusion that adoption is a trauma.

 When she and her husband adopted their children years ago, there was no acknowledgement of the possibility that adoption could have long-term repercussions on a child, especially days old infants like their son and daughter. 

Mainstream science is just now beginning to acknowledge the impact of early childhood poverty, abuse and neglect on the physical health of adults. How stress hormones affect a pregnant woman who is contemplating adoption, while simultaneously growing a baby within herself, should be the next topic of scientific study. Along with maternal grief, fear and anxiety, it doesn't seem illogical to assume the central nervous system of the developing fetus would also be affected.

The caller told me that if she had known when she was handed her babies in the 1980's, that there could be long-term physical and emotional effects of adoption for her children, she would have sought out advice and assistance that could have helped with their healing. Her biggest sorrow in life is witnessing the struggles her adult children continue to have, recognizing they come from deep places involving genetics and feelings of loss that have nothing to do with her relationship to them.

Not every child feels so deeply the pain of separation from their mother of origin. Every human has their own unique way of absorbing stress. Just because there isn't overt pain for one child, does not mean that every child who experiences adoption should also emerge unscathed. Instead of assuming that adoption trauma is rare, adults should assume just the opposite. Healthy maturation without support, is what is rare.

 Acknowledging that adoption is a negative activity that results from the dissolution of the primal relationship of an infant to its parents, does not negate the healing power of second parenting. Adoption is not an either/or activity. Instead, the truth of adoption is that it is an action of also. I love my birth parents, and I ALSO love the other people in my life who love me.

The historical (and still common attitude) that adoption is the mere transfer of legal ownership, is to dismiss the reality of connection between all parents and their children.

Emelia Is Gone

My sister Emelia's birthday on January 11th.  My birthday is on August 11th. We are exactly 5 months apart in age.  We were introduced when we were both 7 years old, and we became sisters and roommates the same day we met. 

We are now both 48 years old. I am older, and because of the way school cut offs work, I was a year ahead of her in school. That made it easy for me to ignore her in public. We had different classes, different friends and led different lives. Even though we shared a bedroom for most of the years we lived at the same address, we were never close.

That is the nature of living in an abusive, Hunger Games kind of family. We kids were pitted against each other, being rewarded with extra food and privileges when we ratted out each other's sins. I quickly learned to never tell my new sister anything. It was too dangerous. 

 As adults, Emelia stayed close to our adoptive parents and I couldn't leave fast enough. We tried on and off, for almost 30 years, to close the gap between us. Especially after Harley and Virginia died, it seemed like we would finally have the sisterhood relationship we both said we wanted. But it wasn't meant to be. The traumas of our childhood kept us apart, unable to break through the wall that separated us.

Emelia suffered in silence a much heavier burden than I did. She was sexually abused by a man our adopted parents invited into our home and claimed as an adult son. She suffered mental abuse that I was able to find solace in others from. She didn't have teachers and friends who rescued her. She didn't get the breaks in life that I did.

Emelia took her own life last Saturday. She will be 48 forever. My heart breaks for the physical and emotional pain I know she suffered. My heart breaks for her husband, children and grandchildren she left behind.

Life is hard. Be kind to one another. 

(from top left): Rex, Matthew, Emelia and Me on the first day of school in our new adoptive family.

Not all of our family, there were  older siblings that no longer lived at home by the time Rex and I arrived. 

Emelia and me, with Harley at a Daddy Daughter program at church. 

Emelia and me with our little sisters/ nieces. We were responsible for  the day- to- day care of the little girls. I washed their laundry and Emelia did their hair. She waa always better at the beauty stuff than me. 

Emelia in high school. I remember arguing over that sweater shirt. It looked better on her. 

Why I Am Voting For Bernie Sanders

Our Crew

I am voting for Bernie Sanders in the upcoming Iowa Caucus because I am wiped out. I am so freaking tired I am willing to publicly admit I can't keep doing this. I need help, and I need it to be real, substantial help, not just an offer of prayer on my behalf or a word of encouragement.

My family may be a tad bit unique in our life struggle, but I do not believe we are that far from the norm. I think we are one family in a large silent and suffering nation of families on the verge of crisis.

 Rob and I are responsible for 3 generations of our family with special needs. Our elderly parents with physical and mental disabilities, our 3 young adult children who each have Usher Syndrome, which causes hearing loss from birth and gradual vision loss, and our granddaughter who has autism. Rob and I are walking, talking encyclopedias on the emotional, financial and physical sacrifices that must be made to meet the needs of people who can't take care of themselves. We are constantly researching resources and treatments, trying to help our loved ones have decent qualities of life. Rob and I do not enjoy financial security ourselves because all of our resources go to keeping our fragile family ship afloat on the wicked seas of ever-shrinking federal and state programs for the poor and disabled.

I laughed so hard a few months ago when presidential candidate Jeb Bush suggested the way to improve the economy was for people to work more hours. Um, Mr. Bush, can I talk to you for a minute? Yeah, we need to discuss how Rob and I are supposed to work more than our full-time jobs, plus take care of the 7 people who are doing the best they can with what God gave them. You cannot accuse Rob or I of being slackers. We put ourselves through college by working, going to school and raising a family at the same time. The only official vacation we have ever taken was 23 years ago, when a charity for special needs children gave us the gift of a 5 day trip to Disney World. You know your family is officially under stress when strangers are willing to pay for you to meet Mickey Mouse.

I am voting for Bernie Sanders for President of the United States of America because he is the only politician I have ever heard who acknowledges that social and health care programs for the disabled and disadvantaged are necessary. As the Bible says, there will always be the poor among us. There will always be people born with special needs, there will always be illness, car accidents and random things that happen to good people everywhere. What America desperately needs now is politicians who understand this fact of life and are willing to act on it.

I hope you and your family enjoy lifetimes of excellent physical and mental health. I also hope that if you don't have that gift, there are supports to help you. Our family is doing everything we can to ensure you will have a safe place to land in the event of hardship. Won't you do the same for your fellow man?