Happy New Year, I finally see 2020

I Hope You Had a Merry Christmas 2019 and We Wish You a Blessed and Happy 2020

Just listen to the sound of that! Happy New Year 2020!

I keep thinking, “now I have finally managed to see 2020, why am I still so grateful for my eyeglasses?” but things look quite as foggy and out of focus as they always have, or at least since I first got glasses back in 4^th grade. I’ve always been near sighted and this is very much how the year seems too. If I look at the distant pictures and news, everything is confusing and unclear, but when I focus on the close to me, every day life, things get clear and beautiful and filled with love.

Greg and I celebrated our 35^th wedding anniversary in May, just 12 days after our only grandson turned 3. Of course that brought a lot of nostalgia and the memories of people who were around when we married, but are gone from this world now. It’s unreal to me that this year our 36^th will equal as long as my Mom and Dad were married before he died. They would have loved my grandbabies and Brett’s. It’s just how my brain has always worked and sometimes it annoys Greg that anniversaries never go unthought of, and days and years since or until something are something I’m always aware of. I didn’t even consciously count it out, but I knew and was sadly aware that Epiphany Day in 2019 was the Day Greg was exactly as old as his oldest sister, April, on the day she died in the Grand Canyon. It feels so eerie to me that now April is younger than all the other 5 siblings. 

I have had trouble with my brain this last year. While the exact diagnosis of what is going on with my health has passed through from possible Fibromyalgia, to Rheumatoid arthritis, to Lupus, to Inclusion Body Myositis, and now the investigation seems to be looking more like Parkinson’s, and that is scary on it’s own, but more so knowing how my mom went through hallucinations and dementia, and a gradual freezing of her muscles in a Lewy Body Dementia which is closely related to Parkinson’s.

I keep finding that I can’t focus for long, I start books but never finish them unless I’m reading them to Daisy. I don’t really write anymore, although I’ve had a book partway finished for about 5 years. I couldn’t get started on this letter for the longest time, and I read very little so even the Christmas cards We received are sitting in a basket, unopened, waiting for me to find the energy to read them. I have been on Facebook and a photo a day project online, plus having two blogs I write, wrote but for quite a while now I mostly read what others post and reshare that if it interests me. Or share the pictures I take without writing much about them. On the photo project I used to write about each picture with several paragraphs and comment on other people’s pictures, but now sometimes I just put up three days photo’s with titles at one go, scroll through the other pictures without commenting and fall asleep in my chair.

We got a new van and the backup camera helps me still be able to drive safely, but sometimes I have to circle a block because I can’t turn my head enough to see the traffic coming from the other direction. And one scary moment, I was driving to pick up Daisy from daycare, like I had done hundreds of times, and there are two long streets in part of the route. Suddenly I knew where I was going, but nothing looked familiar, and I couldn’t tell which of the long streets I was on, so I had to pull over and park until my heart stopped racing and it passed. Then I was fine.

Austin and Trisha’s daughter Trinity turned one in August, and she is so happy, and smiley. It’s a delight to have her around. Gavin at three is wonderful, high energy and curious, and difficult for me to keep up with, but every time he turns to me for a hug I just melt. They have my heart so enamored with their children. I have always loved preschool children, but this grandmother connection is the purest joy.

Greg still likes working at the prison but they just changed his job, so instead of being a classroom teacher, he is going to start being the college co-ordinator. Helping inmates register for classes, getting the materials they need as it comes into the prison, and then verifying that the work is done and returned to the college. He doesn’t even grade it. He thinks it might make for longer feeling days, to not have the actual students but hasn’t begun in that position yet. He is still active in the community Chorale and has the Youth Choir that practices once a week, so the touch of music hasn’t quite left the family. Daisy loves to sing and always gets annoyed at grandpa for not inviting her up on stage at his concerts to sing a solo. At 5 she has to wait until 10 to audition. That doesn’t sit well. I tell her that when he was finally old enough to audition, her Dad didn’t get in the first time he auditioned and had to wait until he was 11.

Daisy started in the same room, with the same kindergarten teacher where both her Dad and Uncle Austin went to kindergarten. She has loved it every moment, but even though I hope I’m wrong, the Del Norte schools look to be heading into their first teacher strike, starting as early as Jan. 15^th 

Frozen 2 in Brookings, OR

Greg had inherited some money from his parents, and decided to use part of it to treat the family to an amusement park filled December. Austin and Trisha wisely chose to pass and maybe come when their two are older, and it was an exhausting trip, even without carrying toddlers and chasing three year olds. We had a great time but We still missed them.

We flew Medford, Oregon to Seattle, WA To John Wayne airport in Santa Ana. Daisy loved the planes and boats on this trip. We spent two days in Legoland and the Legoland hotel was amazingly designed with kids in every step. Enough that Daisy’s favorite part of Legoland was the dance party in the elevator every time you got on. There was even a whoopie cushion printed on the hall carpet that farted if you jumped on it. Also she loved the kid only peephole on the bedroom door and the fact that every night two small bags of legos were locked in the safe in each room, with a scavenger hunt around the motel leading the kids to the combination for the safe.

We did Disneyland for four days, well, I took one day off and stayed in bed in the motel, and Universal Studios for one and flew home on the 22nd but didn’t even get a tree. It felt like we had already done Christmas. Certainly the theme parks had overwhelmed themselves with decorations.

2020 looks like more swimming, acrobatics, soccer and basketball with the granddaughter. Praying for peace and health for you and for the world. Remember to look for the good in each day.

Dixie and Greg

Summer 2019

After 35 years together, my husband and I have a lot of the routines down as routine, and it's easy to go along thinking that summers will always mean the same thing. Teaching some summer school, doing some maintenance and driving back to Wyoming to visit the grandparents.  Somehow, even 7 years after the youngest child graduated high school, 5 year old granddaughter having led the way to tree grandkids so far, it took the death of our final parent, my Mom last November to really convince me that going to visit the grandparents has become being the grandparents.

 My husband has been in a new job for a year now and no longer gets summers off, and my health has deteriorated to the point where this summer I have been in a foggy state induced by trying various medications to see if my racing heart and high blood pressure and painful joints and muscles can be less disabling.  So fr I'm not sure which handicaps me more, the ailments or the treatment.

 but summer, I'm a summer baby who has always loved summer more than any season, and yet this summer even our coastal cool, feels like a steamy heat wave and I'm sweating an complaining at 68* and my cat died, leaving me with two parrots I've had for 30 years and am not sure I can keep cleaning their cages and feeding them.  I love them but they get ignored when I'm feeling too sick to stand and the granddaughter needs must come first  I don't want to sell them to someone who will quickly tire of their noise and mess and realize they don't make good pets, but if I could find a good parrot sanctuary, I might be giving them up.

 I have been reviewing my writing and writing something every day, and I think the medications are finally almost at the right balance.  I'm feeling better and hope it continues as the weather gets colder again.  My fear is that the warmth is really all that is soothing me at the moment

Not for Wimps

 When I bought this house 23 years ago, I was a young Mom of two busy preschool boys and looking for a good place for them to get outside and enjoy being children.  I was impressed with my wonderful, old but never elderly, neighbors who, in their early nineties still had more energy than my husband and I ever had.  Hr helped us out many times and was about as perfect a neighbor as one could hope for - and the closest he ever came to complaining to us was when he would sigh, "this getting old isn't for wimps!"

of course, as happens, the years flew past, and we lost our neighbors and the kids grew up and moved out, then one moved back in with his daughter and the fishing poles and legos were replaced by a flood of pink toys.

I started to feel the wear and tear of aging in my bones and tendons and in the little things that were suddenly huge aches to do, if I could still do them at all.

I'd cuss under my breath and remember, "It's not for wimps."

but then I started to look at people who were a lot older than me and who acted much younger, and I started to think, wait, I'm only 55, that isn't "old, old" yet I feel closer to 100 than my neighbors ever acted.  That's when I started trying to seek answers.

I've been to Dr. after Dr. and had biopsies, blood tests, scans and scopes. I've been paying off bill after bill.  Every appointment seems to result in further referrals to places where I will be charged more and know less.

I am never without pain, I've stopped buying shoes with laces because most days I can't bend to tie them. I only cut my toenails when I'm having an exceptionally good day, and I can't get out of the ben bag or the hot bath that used to be my two places of solace.  I can sleep, and usually do, often beating the 4 year old on total numbers spent unconscious each night.  

 But when people ask how I'm doing I usually smile and say, "Fine. How are you?"  I don't think they believe me anymore. I see them holding doors, offering to open jars, trying to be subtle about making sure I don't fall.  I guess in that way, I am still fine.  I sure am surrounded by good people.

 and Beauty.  I'm surrounded by beauty everywhere I go.

but when I google my symptoms and search medical sites, I see a bunch of other people just like me. Waiting five year for a diagnosis, and maybe hoping not to get one, because then you enter that scary realm of, pre-existing condition, and no one wanting to insure you. 

I wish I could wake up feeling strong again, but when I do get advice and suggestion, they so often are contradictory.  no one seems to know and I often go to bed wondering if this will be the night I just can't wake up again.  then I remember the grandkids, an I know, I have to keep searching for answers because I want to be here for them for years to come.

Christmas 2018

Merry Christmas 2018 and May you have a Blessed and Happy 2019

And yeah, Wow! 2019 does mean we are only one year away from 2020

which sounds more like a vision test result and less like a year I ever even imagined

I'm going to start by saying that I sincerely hope that the old tale that things happen in threes, is correct, because I'm ready for the end of this current cycle of three Holiday seasons. For the third Thanksgiving/Christmas season in a row, Greg and I have lost one of our parents. His Mom died The day after election day in 2016 and Greg and I spent Thanksgiving with the Goode family in Newcastle, Wyoming having a memorial get together and laughing that this life long Democrat just didn't want to hang around for the next term of Republican presidents. Then after we bought train tickets to spend Christmas with Greg's Dad in 2017, he passed away unexpectedly of pneumonia on December 4^thand our Christmas visit featured his celebration of Life service as well as a chance for Daisy to meet more Goode's and go out in the Black Hills in the snow to get her Christmas Tree with Uncle Harv and her Dad. Then this October, Mom, who was weakened already and wheelchair bound, but content in her assisted living center near Brett and Lance, developed Pneumonia herself and never recovered, so on November 4^thwe lost her as well.

We traveled by car this time, only Greg and Daisy and I, meeting my brothers and nephew, nieces, sister-in-law and cousins aplenty. The family gathered in Cody, Wyoming and laid Mom to rest beside Dad, in the same Riverside Cemetery where her parents and several other family members are. So I'm officially an orphan at 55 and it's strange and sad. I don't like it. But there were some really sweet, happy moments in the celebration of Priscilla Slack Miller. We had a wonderful feast in the Cody Club, with the cousins and friends, laughter and conversation and food always being a part of every good moment with Mom. We even found that one of the murals there featured her uncle Clarence wearing her Dad's wooly chaps in a snowy landscape. With a four year old with us we did a lot of the very things Mom most enjoyed, hot tubs and Motels, waterpark, and the Oregon Zoo and Multnomah Falls. People ask how the trip home was, and it feels odd to say, but all three trips home for funerals have been good, happy, family filled visits. I just hope that the next time I get together with family, it isn't for a funeral.

Right after we got home, Greg joined the Crescent City Chorale for a two week tour of Italy, Germany and Poland, so Daisy and I left him at the Portland Airport and stopped at a waterpark in Springfield on our way home for Thanksgiving. That was a dud holiday, the power went out so we had no cooking, or water, or lights and ended up waiting for Emerson to get off work and eat Dinner at Denny's

It has been a year of both loss and births, so Mom will be missed, but the family has a new Granddaughter, Trinity Revae was born on August 3^rdto Austin and Trisha, and joined our grandson Gavin who had just turned two in May. Trinity is beautiful, alert and has an adorable laugh and smile. Gavin is sturdy and strong willed and a real charmer. I don't see them as much as Daisy, and can tell you that living with one granddaughter is such a delight, I'd never known how wonderful being a grandmother could be before her. She is in preschool and is smart and kind and funny. This year she has done swimming lessons and soccer and a lot of art and playgrounds.

The extended family is growing too, so Daisy had a couple new cousins born this year and my niece has another due early next year. I guess that is good, if I don't watch too much news and get too fearful of the future this world holds for today's children. I reassure myself by remembering all the times that I heard my Grandmother, Grace laugh at the fears of parents when I was a child, in that good old days of the Vietnam era. She swore that parents are always convince that te world is a dangerous place and ending soon and that this is the worst time ever to have a child and that children themselves are much more horrid, but they have been saying all those things since Socrates at least and probably since cave men days.

I had a couple of long term sub jobs where I had a class of my own for months, and in June Greg finished 27 years teaching music and started teaching basic skills, GED prep skills, to inmates at Pelican Bay State Prison. I'm liking the fact that he no longer commutes to the next state to teach, as the prison is only 4 miles from our house, nor does he have to be out of town many weekends and evenings at various competitions and concerts. It isn't a job with summers off however, as the prison of course, runs year round.

Healthwise, I haven't been doing very well. And as of yet I've only been eliminating possibilities rather than finding answers. Negative tests and a lot of time between visits make it a slow process, but I'm moving slowly and stiffly and things happen like popping my achilles tendon and tearing my rotator cuff. It isn't Lupus but may be some form of Rheumatoid arthritis, but even more likely not, and may be IBM (the disease, not the big company) which is a type of muscular dystrophy.

Anyway, this aging time of life isn't for whimps, but I guess it's undeniable when you are a grandmother, with no parents of your own left above the surface of this beautiful planet.

I'm still writing my books and doodling in my free time and most of all helping raise a wonderful girl who adds so much joy to my life, but really misses her own Mom and doesn't understand that, but then neither do we. If you are one who prays, as I am. Pray for the children and this wonderful, troubled world and every now and then, remember us.

Merry Christmas, Happy New Year and

“God Bless us, everyone!”

Thoughts of approaching summer 2018

On this Sunday of Memorial Day Weekend, spring is definitely giving way to summer. I sit reading a book in my shady living room, with the doors and windows open and the sound of my husband chopping kindling fills the air, even though it has been too warm to use the woodstove much lately. We use more kindling on these days with only a brief fire to take the chill off the morning, than on the bitter cold days when we never let the fire go out.



Life has been fairly consistent for us for a couple decades, and the changes of aging have been slow enough to mostly ignore. Our children grew up but grandchildren appeared to fill our rooms once more with a jumble of toys and our laps with snuggly
hugs.


In three weeks my husband stops being a music teacher, after 29 years. But he goes year round teaching at the big prison down the road. GED prep classes instead of music. Sadly working in a prison he will get paid a lot more and be a lot more secure that working with children in a public school. It reminds me of the medical insurance willing to pay to treat diseases but not for the much smaller preventative care.

Speaking of medical care, I am still trying to get a diagnosis on the degenerative issues I have been having health wise. It seems to be hard to get an answer but the loss of simple little abilities continues. So my goal for summer is to keep moving, develop enough coping strategies to regain some flexibility and strength while also keeping up on Dr visits. I also want to de clutter the house, turning what was once a playroom but became storage as my kids grew up and moved out, back into a playroom for my three grandchildren and their cousins. And the last big goal is to become more active as a writer again, not just writing on Facebook but finishing my eighth book and getting back into the marketing of the ones I have already published.

But when Fall rolls around, the only goal I will feel like a failure for not achieving is the goal to be there for my boys turned men, and their children. Grandma time is more important than everything else

Worries and Joys

Let me start todays post with a quick update on my brother

Five months after he first went to ICU

Last night, 1/22/16 I got a call from Lance, at first he sounded normal, chatting about the upcoming games in the run up to SuperBowl and making certain Austin and Emerson were doing good, and their girlfriends and Daisy, but once he had checked on all of us he started sobbing, "I'm sorry, Dixie. Brett's upset with me."

I asked why, but Lance is hard to understand in person at times, and even when he knows what he is saying, he has to triple check that you understand him, he won't accept just "uh, huh" but makes me repeat what he said back to him because he's used to people nodding even when they can't understand. He's harder on the phone and even more difficult when he is upset. So with the tears all I was getting was "work out, hospital, I'm tired. Hurts"

I had to get in touch with Brett to get a clearer picture. He says Lance was fine by then, showered and in his pajamas. But that he had a difficult day. He was refusing to do his physical therapy, even though he knows he needs to get strong and even though he doesn't want to end up back in the hospital. So Brett had to make him do it, and of course Lance is so dependent on Brett now that the idea of making our brother mad, terrifies him. but of course he is exhausted and no one likes pt every day.

Brett is worried still, Lance went into ICU BEFORE Christmas again, and the micro robotics revealed he hasn't healed at all from the original leak in his bladder/kidneys. They did a feeding tube then and Brett feeds him 4 times a day. He is also being treated for sores from sitting and laying in the same position so much. He still has a catheter and sometimes is incontinent and the nurse says the feeding tube can make it hard for him to tell he has had a bowel movement. 

Brett swears he is slowly getting better, and I think Brett is an amazingly patient caretaker, but the long, slow road has been brutal on their side of the country. That is without considering that both our Mom, and Brett's Mother-in-law are there and suffering dementia and physical issues too.

Edited to add that I talked to Lance Sunday the 24th and he was in much better spirits, the snow in that DC area this weekend, and the two teams who are headed to the Super Bowl have him energized and playful sounding.

The picture is Brett, and Dad's dad, Emerson Miller and Lance in about 1985

Lance has a cell phone (540)-359-1413 and you can send cards and pictures and letters to them at the same address

  Lance Miller /PO box 865/ Middleburg, VA 20118

The rest of my life since Christmas has been a mixed bag.  Things are really saturated here, I've measured 60 inches of rain at my house since Thanksgiving, and our town has flooded and receded a few times, my firewood is soaked and the woodstove is hard to keep burning so the house feels cold. My bills are a stressor, and my abdominal pain has been back at the old mystery attacks.  But it has been beautiful too, and I've made a lot of progress on my novel editing, and over all the frustration and worry is the Joy of knowing I have a great family, a chance to sell a few more books and a school or two that like having me teach, or present as an author. I have a granddaughter who means the world to me, and a grandson due in early May.

 So while somedays I want to burrow into my blankets and refuse to face the world, I do keep getting up and forcing a smile, until the smile is real.

 I hope you are all into 2016, and finding more to interest you than the political scene.  Thank God life is so much more than the debates.  More later, but not promising how soon.  Joy for now.

Updated for those who know I love my brother with Down's Syndrome

Edited to add in an update at the bottom of the post

Lance, Mom and my Dad's sister

Twice I have written about my brother Lance on this blog.

http://echo-echosvoice.blogspot.com/2013/07/my-brother-is-so-up-about-his-downs.html

on this post which begins by telling about the other post

My Brother is so Up about his Down's Syndrome

Lance and Our Grandmother's Brother

Once I was 12 years old and my Mom had a baby and my world changed. Prior to his birth we had never even heard of the children, called "mongoloid" at that time in our lives, so we thought his "condition" was a "tragedy" which would make his life painfully difficult. We already loved him enough to not be thinking about how it would change us, and we'd never have imagined the joy it has brought.

I wrote about Lance earlier in a post here

http://echo-echosvoice.blogspot.com/2011/10/my-brother-has-downs-syndrome-and-i.html

My family visiting just after Greg and I were married in 1984

But now I have to write that things are not going smoothly for my hero,  A couple years ago Lance and my Mom had to leave their home in Wyoming to move to Virginia to live with our other brother, Brett.  Brett is between Lance and I in age and has been amazing at stepping up to make a home when my Mom began to suffer from memory problems and confusion that kept her from doing necessary things like taking her diabetic blood sugar pills, or paying the phone bill.  At first the depth of her problems were camouflaged by how competent Lance is.  He kept her attending their daily and weekly routines,

 "Time for work, Mom."  

"Dinnertime" 

"It is Wednesday, we have Bingo tonight."

but the things Lance didn't know about, he couldn't remember for her.

So Lance and Mom now live 3,000 miles from me, and I don't see them much.  The fact of expense and time and work and kids have all given me excuses to think a phone call and letter and occasional package were all I could do at the moment.  Then yesterday afternoon I  got a call from Brett, and he was in tears, saying, "I'm not calling with good news." so I assumed it was Mom, and was stunned when he said, "it's Lance." I guess several people in Brett's house have been sick with the flu, so they thought that was what was going on with Lance, but out of the blue, getting ready for a shower, he collapsed and needed an ambulance and is now in Valley Medical, on IV and antibiotics and getting MRI and CAT scans and they do not know what is wrong, but the Dr. shook his head at Brett and said, "This is life threatening."

Lance driving to feed the animals on our brother's home ranch

a couple hours later Brett texted me: "they found a football size fluid in his abdomen. They still do not know what is wrong but that is what we do know. He is so sick."

Then I thought we were losing him. Brett sounded totally distraught in his next call, he said in the last hour he's gone really far down hill and there is internal bleeding, and fluid filling his abdomen and they are putting him on life support with a ventilation tube. Brett has been told he can only stay in the room with him until 10 PM eastern time and then has to move out to waiting room.

But by 10 they knew Lance would not survive the night and rushed him in for exploratory surgery. He came out of surgery around midnight, and they had found his bladder blocked and holding 800 ccs of urine when a normal adult male would be uncomfortable with >300 ccs . They cleaned out the infection and feel positive that he has a chance to survive now but they still don't have all the issues figured out.

the last bit that I know came in this morning

Ok, 9 AM here Noon, where Brett and Lance are. Brett just left Lance's room to go get some food and called to tell me what he knows. Lance is awake and giving the thumbs up when asked how he feels, but can't talk as he still has a ventilator tube breathing for him. They know the infection started in the kidneys or urinary track somewhere, but are not sure exactly how or what it is. They are giving Lance a ton of broad spectrum antibiotics and keeping him hydrated and on pain medicine so he is drowsy and still going to be in ICU for quite a long time, maybe weeks. No flowers are allowed in ICU but cards can be sent. 

Lance Miller /PO box 865/ Middleburg, VA 20118

One thing I need to add here is that my earlier blogs mention the hideously cruel treatment Lance faced from medical "Professionals" in the first years of his life.  That has not been the case here.  Brett says the Dr.s and nurses have gone out of their way to explain that they have friends and family members with Down's Syndrome.  Higher than the average population even because many medical people wait until they are older to have children and that increases the risk.  Lance was born in 1975, and is turning 40 in October this year, God and the wisdom of these professionals willing. One thing I know with absolute certainty, is the attitude of the world toward these people and their extra chromosome has changed in those 40 years, and the love and compassion coming back to him now, is a reflection of who he always has been.

Prayers welcome of course.

Lance and I in Virginia, July 2013

Mom and Lance at the Smithsonian Museum of the American Indian

With cousins at Thermopiles, Wyoming

Riding Red Devil at Hell's a roaring outfitters

http://www.hellsaroarinoutfitters.com/about-us/

On a trip to build homes in Santiago Atitlan in Guatemala

Latest Lance Miller update from Brett on Sept. 2 at 6AM


"Lance has not been making the improvements necessary to consider him on the mend quite yet.  He will be going in today for a second surgery.  The good news here is this surgery is solution oriented.  They have found the source of urine leakage into his abdomen and will be placing a tube from kidney to bladder. Lance is still very, very sick.  His white blood cell count is 4 to 5 times that of an average person who is very sick.  I believe he will come through all of this and be back to terrorizing the local restaurants very soon."

Team Lance Miller update: 9/02/2015 12:15 from Brett 

Lance's surgery is postponed for at least today. They are giving him some more time to heal and get a bit healthier before performing surgery again. This surgery is necessary but not an emergency this time. Lance looks good and is getting back to his usual sassy self but gestures that he is happy to be in the hospital getting better. Leaving him rest now. He had 12 IV bags running earlier today.

9/4/15

My phone was down with the rest of a large part of the Northernmost of CA on the third so I didn't get the update until today when our brother got through to say he had no real news. Just rest and recovery in the ICU yesterday and that will probably continue today. Today's also our Dad's Birthday and I still have to remember that with a sad little smile because even though I've been missing him for 18 years, I'm really glad he was born. Happy Birthday, Paul Miller.

Last on 9/07/2015
Lance is off life support and down from 12 IV lines to one.  He has been taken out of the ICU and allowed to drink and may have his follow up surgery for repairing the leak between Kidney and Bladder on Tuesday