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Wednesday, April 25, 2018

Lots of things have kept me from blogging these past few weeks--an upsetting episode related to my older daughter's emotional problems, my own what's-the-use despondency in response, house renovations, disposal of all the stuff we don't need, reorganization of all the stuff we're keeping, in-law and extended family obligations, excessive preoccupation with and far too much reading about current events on the political scene, etc., etc. But probably the main thing that's kept me from typing out even a short blog to update all my story lines has been my overly prideful feeling that if I write a blog, it has to be a masterpiece. Perfectionism strikes again, and as most of us know, the desire to be perfect is a big tall roadblock to accomplishing whatever it is we think we want to do.

Anyway, today I'll just let you know about a few things that several of my Spark friends have asked me about. First, as you know, my sister's son was involved in a car accident on his way to the airport a couple of days before Christmas last year. His infant daughter was uninjured and his wife suffered only a broken arm, but my nephew was paralyzed from the waist down. From the beginning, his attitude, by all accounts, was outstanding. Through it all, he never lost the feeling that his future would be bright and that he would be able to do whatever he had done before. He joked with the doctors and was playful with the nurses. I was not that close to him as he was growing up--my sister lost custody of him in a bitter divorce from her attorney husband, and I lived in Japan--but I would see him periodically when going home to Georgia from Japan over the years, and he was always the sweetest, most eager-to-please, funniest little guy who brightened all our holidays. He had turbulent teenage years, likely from all the upheaval he had suffered in his early childhood, with remarriages and new siblings and sudden changes in living arrangements, etc. Then he joined the Army and survived a tour of duty in Afghanistan. He seemed finally to have achieved happiness when he left the Army, fell in love, got married, and had a little daughter who looked just like him, complete with strawberry blonde hair. When the accident left him paralyzed in December, it made me wonder how so much heartache could be visited on one individual. But attitude is everything, and perhaps Perrin is here to show us that whatever our circumstances, we can lead a happy life. After weeks of rehab and various kinds of therapy--physical, occupational, emotional, marriage, even recreational--he has been released back into "real life" and is doing very well. Of course, there are many trials to come, but at the moment, he and his little family--his daughter turned one a month ago--are doing well and shining their light.

My sister, who is almost to stage-4 polycystic kidney disease and is awaiting a transplant, is also doing well, although the transplant that seemed a sure thing has not yet taken place. Meredith is an incurable talker-to-strangers, and that's how she met her donor, Krystal, the manager of the produce section at the neighborhood supermarket. Every time Meredith would meet Krystal during her trips to the produce section, the two would engage in friendly chit chat, but Meredith still did not know Krystal very well when, on her first trip to the supermarket after Perrin's accident, Meredith related to Krystal what had happened, including the fact that even though Perrin had eagerly offered to be Meredith's kidney donor, his accident would now prevent him from being able to do so. Upon hearing this, Krystal, as if it were the most natural thing in the world to do, as if she had just heard that Meredith needed something like a ride to the airport, said, "I'll be your donor." Meredith had not, of course, been fishing for an offer so was taken aback by Krystal's huge expression of generosity, but as time went by, it became clear that Krystal was serious, and Meredith gratefully accepted the wonderful offer of this near-stranger, a woman with a husband and two teenagers at home, a busy manager who was willing take the time and trouble and risk to vastly improve the quality of life for a fellow human. It turned out that Krystal's employer, upon hearing Krystal and Meredith's story, offered full support, with paid time off for Krystal and any other support she needed. A myriad of trials and tests would follow, and each step of the way always showed compatibility and a problem-free way forward. Meredith and Krystal were a match, and each was deemed physically and psychologically fit for the transplant surgery.

When I visited my sister in late January, all systems seemed to be go, and it seemed as if the surgery would take place soon after my departure date. However, not long afterward, some concerns suddenly arose about what was close to the final test Krystal would undergo, which had something to do with her thyroid function. I don't know physiology so must use very rudimentary layman's terms, so all I can say is the delay is about "thyroid."

And then I got very busy and heard nothing for a while. I was waiting for word from Meredith but decided finally to call her, thinking the silence probably meant that the deal was off and that Meredith would be back to square one. What's up with the transplant, I wanted to know; has it been ruled out? No, said Meredith, everything was apparently still on, but they were awaiting further test results. Would Meredith have to go on dialysis, I asked. No, she said, she still had 18% kidney function, so dialysis could be delayed. I expressed dismay and sympathy, but Meredith was upbeat, accepting that despite both her and Krystal's desire to go through with the transplant, it might not work out as they had planned, and that would be all right. Heck, said Meredith, if worse came to worst, she would put a banner on her car and drive through the city streets asking if there was anybody who wanted to be a kidney donor. (I'm pretty sure she was joking and wouldn't really do that, but with Meredith you can never tell.)

Polycystic kidney disease is hereditary, with each child having a 50-50 chance of inheriting the disease. My mother inherited it from her mother. Of my mother's four children, only Meredith inherited the disease. As Meredith's twin (fraternal), I have complicated feelings about this (guilt). But medical science has vastly improved. My grandmother died in her 40's, in the early 1950s. My mother at age 71, in 2002. Meredith and I are now 61, and there is an excellent chance that despite Meredith's PKD, we will both live to a ripe old age.

So that is where things stand with two of my story lines. All is well. I love life, and I am grateful for everything.
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Member Comments About This Blog Post
    Thanks so much for this update. Take care my sparky friend. Love you.
    703 days ago
    Thanks Carolyn for sharing the good news about your nephew, your sis and the baby. Sound like things are going better now. I am hoping she had the surgery and is recovering now. Will keep her in prayers and hope all will go well soon.
    Thanks for commenting on my activity too. Had my reverse shoulder replacement April 9th and had many weeks of rehab/pt.....doing much better now and started back to exercise class today. Still cannot do some things, cannot put the arm behind me, so difficult dressing, bathing, bathroom and some other things, sleeping, etc. However, I am grateful that I am mostly healed from a difficult recovery period.
    Think of you often and am starting to get back on my computer more now, so hope to keep in touch more.
    God bless. Prayers for you and your family and your sis and her family too.
    love and hugs, Ei emoticon
    755 days ago
  • 1958TMC
    missing your blogs
    771 days ago
    How did I miss this?? I miss you so much. Thank you for blogging, whether you know it or not you are perfect!!
    785 days ago
    Wow, hon! You have been busy. You are so right about attitude. It gives me hope to hear that a person would offer up her kidney to a light aquaintance.

    I will send prayers for all. Also, stay away from the news a bit. I watch just enough to not be in the dark, but I really try to avoid much of it. I have taken up some relaxing hobbies, like playing the piano, violin, adult coloring, and jewelry design. I have been analytical for far too long and wanted to get back to my creative pursuits.

    Set aside some time for yourself each week to do what you enjoy doing.

    789 days ago
    Dearest Carolyn:

    I'm here to tell you that this perfectionism thing is a curse! It's exactly why my book has never been completed and never will be completed if I continue on the path that it must be PERFECT!

    I've decided to write it for myself. If I think about other people and how they will respond to it...will it be good enough...will it be perceived as whining...those thoughts shut me down every time. So when the 'editor' jumps on my shoulder I just flick her off and continue to let the words flow. After all, writing is such a cathartic act for me that should and will have to be enough. If my story can help inspire others then I say hip hip hooray but it is mostly for myself. It needs to fulfill my tribute to my 'Josh' and get his story out there and that is the TRUE reason to go forward.

    I always look forward to your blogs as they are so real and authentic. Most writers are a little wobbly about stringent rules and regulations, we tend to experience our world through emotions and perceptions and as a result of that, I think we are too hard on ourselves about producing 'perfect' content. We always question emotional stuff as good enough.

    I say...just continue being your 'real authentic' self dear Carolyn...that is good enough...completely enough!

    Hugs to your nephew and his family, extra hugs to your sister and her earth angel...all will happen in good time.

    As for politics...UGH...we watch the political shows like programmed robots. How can you turn away, it's like watching the biggest million car crash on earth? This horrible man has created a train wreck of a reality show every single day. He's a con artist and a trash man thumbing his nose at our democracy. Even worse than who he is are the zombies in our congress and senate that turn their heads to protect their own sad hides..it is appalling! emoticon People have sold their souls to the great totem of money. emoticon

    817 days ago
  • HEYRED221
    Thank you for sharing Carolyn. It is wonderful to hear the updates and I wish nothing but the best for you and your family. Please don't forget to take care of you too! Love and hugs,

    825 days ago
    Thanks for the updates. Just catching up and am between doctors' appointments early for me-turned out better than I anticipated. And this afternoon Erik has one further away. I hope Meredith and Krystal can get things straightened away soon. Glad to hear the upbeat news about your nephew.
    Sorry for your despondency and the continued problems with your daughter. Praying you can resolve yours although both of us know we cannot resolve/solve our children's problems they impact us.
    Lots of hugs and prayers Carolyn.
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    825 days ago
    Thanks for the update. It is always good to hear from you!
    Continued prayers for Perrin and Meredith.
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    826 days ago
    Thanks for the update. Continue prayers for your sister and your nephew. emoticon emoticon
    828 days ago
    Thank you for the updates.
    I am sooooo not a perfectionist but you and a few of my other sparkbuds are such amazing writers that I do feel a bit intimidated to write at all...even when I have big news to share, never mind the minor trials and tribulations of my journey to better health.
    emoticon emoticon emoticon
    829 days ago
    When it comes to kidney disease one never can be sure of anythi
    829 days ago
  • WHITE-2
    Thank you for sharing. Please pick your perfectionistic peeves carefully! You really won't be punished for writing a sloppy blog! emoticon
    829 days ago
    You have such a beautiful attitude Carolyn in the face of so much adversity. Life sure does throw us some curve balls at times. Thanks for the update. Sending you a little fairy dust and a great big virtual hug.

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon
    830 days ago
  • PHOENIX1949
    830 days ago
    It is good to hear from you. emoticon
    830 days ago
    Sooooo good to see a blog from you, my dear friend! I put a letter in the mail to you a few days ago, but it came back, because some of my stickers were too puffy. I had to put another stamp on it, so it went out...yesterday? I think. Time is so weird right now.
    830 days ago
    Wow - the good comes with the bad & more good comes. Here’s hoping the donor kidney works out well. It was good to hear from you, Carolyn.
    830 days ago
    Thanks for catching us up. I'm there with you on "far too much reading about current events on the political scene" - every morning I start reading the news and commentary on my laptop over coffee and I go down that rabbit hole for about two hours. I never stopped to think about it before, but I guess if this was a more 'normal' time in our county I probably wouldn't be doing that.
    830 days ago
    Not sure if you consider this blog a 'masterpiece' but I do. Clear, concise, providing lots of information regarding different issues in an easily understandable way. You write beautifully, with love, compassion and humour.

    I hope that Perrin and his family continue to do well and shine their light. I hope that the transplant is able to go ahead for Meredith - what a star Krystal is btw. And I hope you'll continue producing your wonderful blogs.

    Peace, love, and bright blessings on you all.
    830 days ago
  • _BABE_
    You have been through so much these past few months and I admire your strength. emoticon
    830 days ago
    Thank you for letting us know more about these things. I feel like I know Perrin and his family better. He's such an inspiration, as is your sister! It's so beautiful how the lady decided to help and how the employer offered paid leave to do everything related to this. I really hope that this works out. This may be the case of "the life you save may be your own." If she didn't offer to donate a kidney, the lady wouldn't know that her thyroid function wasn't at its best. I was just reading about that, and it can have serious health repercussions. But medication can usually fix that issue, and hopefully the transplant will be back 'on.'

    Your house being changed, and possessions being gone through and given away could be contributing to your daughter's emotions being a little out of control. Does she feel like she's a part of these things? You didn't really say much about it, and that's just guessing. I know it's weird, but my mom's boyfriend always started to freak out if we would clean an area. He would go there, and move things back and make some kind of mess. It drove us crazy. We felt like we couldn't get any cleaning done with him around. But when we let things slide, he would complain about that too. That also bothered him. It's hard to know what to do sometimes. Maybe if we had cleaned when he wasn't home, that would have been better. And just stuck to a cleaning routine, even though he did this messy-bringing activity. Now it's too cluttered to have company over, and it's really a shame. I'm going to try to make inroads in cleaning this spring/summer, while it's nice and warm.
    830 days ago
    Prayers continue for your precious DD, Meridith and Perrin. Thank you for sharing the updates. You do have a lot on your plate. It is not easy! HUGS
    830 days ago
  • SPICY23
    Sending Encouraging thoughts your way.
    Stay strong.

    Peace and Care
    830 days ago
    So glad to see your blog today. Your sister sounds like an awesome person and as for you, don't let that "perfection" attitude get in your way. The story you told was amazing and I'll be saying some prayers for your sister and her donor.

    You take care of yourself...

    Carpe Diem

    830 days ago
    Thank you, Carolyn on the update on what has been going on in your life. my heart goes out to you sweetie. please don't feel guilty that you didn't inherit the PKD. she seems to be the stronger one and seems to be handling and talking to the manager of the produce dept. and she is a match. prayers that all works out well and your sister gets the kidney. such a gracious person to step and offer a part of herself. she has made a friend that will be with her for life. this just makes me feel warm all over. you my dear have all us sparkers here for you as friends and we love you. we love hearing from you through thick and thin and we are here to support you through whatever you are going through, the good or the bad.

    i am one of the least perfect people here on earth and i will admit it, i do the best i can and maybe my words don't come out right or i'm even at a loss for words, but i'm here for support. i will even cry or laugh with you virtually. if you get a blank comment that means i'm at a loss for words.

    you can look at things half empty or half full. your sister is sure she will get the kidney transplant and her kidneys still have some function. that is something to be thankful for. Perrin is doing so well with what has happened to him. he still has his family and they are a loving family...that is something that is a blessing and something to be thankful for.

    you have so many things going on in your life. Your Daughter, praying things get better for her. going through the house renovation, extended family problems and.... my goodness sweetie you have so much on your plate. you could use support and we here love you and support you. just blog away and there is never a need to be perfect.

    please take care. love, emoticon and emoticon emoticon

    830 days ago
  • DESIREE672
    I’m very relieved that you blogged, but I agree with BBEAGAN. Blogging is absolutely for you.
    You and your family are inspiring with your courage.
    830 days ago
  • EISSA7
    Lots on your plate AND on your mind....life. It certainly isn’t perfect and neither are any of us! It is always good to see your posts...even if they were just a sentence or two.... emoticon
    830 days ago
    There's so much going on for you and your family... How stressful. You know, SP blogs are primarily for the writer... You are a beautiful writer, but you are not required to be... You are allowed to come on here and just write "LIFE SUCKS SOMETIMES!" Full stop. Or "I'M REALLY STRUGGLING!" It is okay to do something like that! Hang in there.
    830 days ago
    Awwww Carolyn, each time you blog it is perfect. Clearly you write from your heart. The details that tend to bother you are truly inconsequential. Perfectionism...ugh, no words! Your life’s bucket of “oh boy” has been overflowing. Amen to having the strength to find your way. Many in your life shine their light...powerful. The strength, hope, and courage of others does much to up our oomph...especially when we aren’t feeling it. Grace at its finest...love and hugs for you, sweet chica!
    830 days ago
    That is good news about your nephew, Carolyn.

    It sounds like you have a lot of stressful things going on. I am amazed at your strength through all of it.

    emoticon emoticon
    830 days ago
    Thank you for sharing the good news, Carolyn.
    830 days ago
    Carolyn......you are my inspiration today! With everything going on in your life, you still have an amazing attitude! Sometimes .....when a problem arises....I think ......next year at this time, this will be a memory and everything will be ok. I have learned from my sister to let go and let God, it’s not easy to do that, because we want to fix everything. My prayer for you today is that you can turn this over to him and find the peace that you so deserve. Sending prayers, positive energy and thoughts and a huge hug! emoticon emoticon
    830 days ago
  • SEAGLASS1215
    I'm so glad you were able to update us on all that is going on - you and your family certainly have had more than your fair share but everyone seems to be handling things with good spirits. Truly needed to hear this today as my own problems now seem small and petty in comparison. Wishing you some peace and tranquility in this crazy journey!
    830 days ago
    That saying:”you never get too much on your plate to handle...” well personally Carolyn, I think that is a load of crock. Your life has been full of turmoil and you deserve some calm. It will happen. Just hang on dear one, you are truly doing fine.
    830 days ago
    You certainly have been through a lot this past year. You have handled it with grace and dignity which probably helps you deal with things a bit better. You have such a nice way with words, I don't, I know what I feel and want to say but it doesn't seem to come out the way I want.

    Anyway just want to know how much I appreciate your uplifting and supportive comments you leave on my blogs and just know I would like to give you the same support, just don't know how to convey that. emoticon emoticon
    831 days ago
    I too am happy that Perrin and his family are doing so well and pray that the transplant goes ahead for Meredith. (I love that name) She and her Perrin are like none other with such a glorious outlook on life. Oh to be so positive in the face of such tragedy and drama not of their own making.

    I truly hope that your darling daughter's condition is now stable and that such stability continues for a long time with only small twists and turns in her journey through life.

    I'm happy to see that you are blogging once again and hope that you have the time and desire to do it more often. Do take care my dear friend. Until next time . . . .
    831 days ago
    I am so happy to hear good news about Perrin. What an amazing young man he must be to have faced such tragedy and come through it with a wonderful spirit.

    And what a true miracle for the produce manager where your sister buys her groceries to be willing to help her in such a personal way. This gives me pause to think of the truly wonderful people we still have in this world.

    I, like you, can get rather caught up in the political craziness that is going on in our world right now. I can't ever remember a time that felt so disruptive - but then earlier in my life I probably couldn't have even told you who the President WAS because I was so busy taking care of my kids and trying to keep my job! For many years, more than I can remember, I like to start off my day with the morning news - I am not doing that any more. I watch a few minutes of our local news to get the weather and anything important that might be going on in my neighborhood. Then the tv goes off. I've had enough scandal and projection to last forever.

    Thanks for sharing your news. Wishing you a good day!
    831 days ago
    I really appreciate the updates and I am exhausted just reading about all you have been facing. I have been thinking about you and your family and I wish you all continued strength. If Perrin writes a book or creates a series of motivational speaking videos or creates a blog that requires a fee to read, I will buy the book/pay the fee whatever to learn from him! He has so much to teach about resiliency and spirit. I hope things go smoothly for your sister. Interesting about thyroid. I have Hashimotos thyroiditis and nobody would want my kidneys due to all the kidney stones, but had never heard thyroid issues and kidney functioning could be linked. I hope things remain stable for your daughter. Thank you for taking the time to share with us and be so open. You help so many of us through your writing and kindness.
    831 days ago

    Comment edited on: 4/25/2018 9:47:08 PM
    Thank you for the update, sweet Spark friend. I think it was perfect! Perrin and Meredith sound like two amazing people-- they will both continue to be in my prayers. Good for you on the house clearing and reorganizing! My decluttering is still on the to-do list. emoticon and emoticon and emoticon
    831 days ago
    Your family has been through so much and I admire their grace in dealing with life's challenges.

    All of you are in my thoughts and I'm glad you're posting again.

    831 days ago
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