Two Words

It’s the strangest thing to find yourself playing a role for which you have no preparation and no escape. That’s how I felt when medical staff looked at me with such kindness and empathy and a trace of “This poor Mom just can’t accept reality.” That’s right, I was abruptly and unwillingly cast in the role of that mother….you’ve seen her in movies, the one who won’t let them pull the plug….the one who sits bedside for decades clinging to hope.

Some of you know about my daughter’s decade-long struggle with violent seizures which has left her brain-injured among other things. I don’t write about this much, mostly because I don’t really want to. I’ve never wanted my blog to become a repository of dreary hospital stories and doom and gloom.

But life is not all hyacinth bean vines and cute little Westie boys, is it?

Once in a while a memory of those early terrifying years will pop up so powerfully and unexpectedly, and with it such a strong life lesson, that I want to tell a bit of the story. That was the case in cleaning out my closet in preparation for fall. Funny the things that trigger memories.

Through a blur of ventilators, medically-induced comas, and at the lowest point, the administration of Last Rites, we never really believed that Jen would die. And inexplicably she did not. Her wonderful nurse shrugged her shoulders at one point later and said, “She’s young.” Sometimes that counts for a lot when you’re critically ill. Jen seemed on her way to some form of recovery when the seizures came back with a vengeance. This time they really did a number on her.

She became a word you don’t ever want to hear describing your loved one: Spastic. She flailed uncontrollably in bed, rocking back and forth endlessly with her hands contorted into a sort of lobster-like claw. And when I would lift her eyelid to try to stimulate some period of awareness, there was nothing. Nothing at all. This went on for two agonizing weeks and in the background, of course, the chilling question of what would remain when she did wake up.

Eventually the hospital informed us she would have to be transferred. The rehab hospital screeners arrived and stood at the foot of her bed as she rocked to and fro. Not surprisingly, they saw her as unfit for rehab.

Except I knew she was in there hiding from all the neurological chaos in her brain. I envisioned her huddled in a dark corner waiting for the terrifying lightning storm overhead to pass before she could make the trip back up to consciousness.

I don’t have to tell you I pleaded with staff, right? Begged and cried for just a little more time before she got transferred “out” to wherever people like her get placed. And one good doctor agreed to let her stay the weekend before transferring.

Saturday morning I showed up early to her room in ICU. She was in her customary fetal position but this morning, somehow, it was different. The relentless flailing had stopped. Her hands had relaxed from that awful contortion. I placed my hand on her cheek to let her know I was there. She opened her eyes and said two words.

“Nice sweater.” This sweater:

 

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How does one burst into simultaneous tears and laughter? Word spread through the ICU like a happy virus. Nurses who had cared for Jen so tenderly were laughing with me and saying, “It IS a nice sweater. No wonder she had to say something.”

No need for me to trot out any cliches here, right? We know when things seem at their bleakest, we sometimes earn a reprieve. And that casting somebody – anybody –  into a particular role can be a terrible mistake.

Winston Churchill said something about “This isn’t the end, it isn’t even the beginning of the end, but it is, perhaps, the end of the beginning.” And so it was for us.  We had many struggles ahead of us, but I was learning to trust my instincts and to fight for them.

And to wear nice sweaters.

PS: Jen spent almost three years in rehab and did eventually make it to Virginia where she lives nearby.  Mercifully, she doesn’t remember any of it.

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About Silver in the Barn

Life in a 1915 farmhouse in Central Virginia. Blogging about whatever happens to catch my fancy - sometimes nonsense, occasionally not.
This entry was posted in Random Ruminations and tagged , , , . Bookmark the permalink.

89 Responses to Two Words

  1. Mary Ellen says:

    You bring me to tears many times when I read your blog! Is there a book in the works? There should be, you have such a gift. Thanks!

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  2. Nothing I say can honor or pay tribute to people like you who have lived a much different/more challenging life with grace and dignity–and a wonderful sense of humor. The glass is always half full. Warmly, Cindy

    Liked by 1 person

    • Cindy, thank you for such kind words. We are just a regular family, like anybody else, that has been dealt a terrible blow and has had to figure out how to carry on. I will say that this long ordeal has made better people out of us, but at a cost I wouldn’t wish on anyone.

      Like

  3. KerryCan says:

    As a newcomer here, I had no idea, no idea, of all you’ve been through. The story you’ve told really got to me–made me laugh and made me sad and gave me hope. (And it IS a nice sweater!)

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    • I’m so happy to read your reaction, Kerry. I want the message to be one of hope and endurance, of course, and I dread it will come off as a narcissistic ploy to gain sympathy. So thank you for easing any internal disquiet I might have, I appreciate that very much.

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  4. Dianna says:

    If I were you, I could never part with that sweater, either. So glad that the one doctor agreed to let your daughter stay through “the weekend”, and glad that she’s close to you now.
    Cindy V’s comment is wonderful.

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  5. It just needs one person to listen…but sometimes you have to shout a lot to bring that one person to the fore…

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  6. I love this post, I love that you shared a part of your personal world with us, I love the sweater (It’s gorgeous!) and I LOVE your daughter’s firecracker wit.

    Now. About the spare mascara…

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  7. dorannrule says:

    Barbara – Again, I am in awe of you and Jen, You leave me speechless and grateful that I have met you and can share just a tiny part of your world.

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  8. Sandra says:

    Such a beautiful story, beautifully told. I had no idea. You’ve applied a sense of perspective to a bleak day. Well done.

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  9. ritaroberts says:

    Well ! What is there left for me to say Barbara except its wonderful to meet such a courageous lady .I among many others knew nothing of your struggle in life and feel honored that you chose to share your story with us here. How proud your daughter must be of you in helping her to recover and of course all the nursing staff. Throughout life we all have a cross to bear and yours is the exceptional one in being strong enabling you to cope with such a traumatic time. I am so pleased your daughter lives close to you.

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    • You are so right, Rita, that at some point we all have a cross to bear and I thank you abundantly for your kind words. The really courageous one is Jen who has lost so much and still carries on with tremendous strength and lack of self-pity.

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  10. caffienna says:

    Thank you for writing this. It is a song of love.

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  11. A great story of overcoming such adversity with a reward at the end. It seems that at times, we all show such courage and determination to carry on. You and Jen certainly are an inspiration. You made my day.

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  12. M-R says:

    You brought tears to my eyes, Barbara … What a wonderful story ! – just WONDERFUL.

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  13. Diane Ahlberg says:

    Somehow we find strength- don’t know where it comes from but just appears when we HAVE to have it
    Jen is always in my thoughts as you well know as are you and Roger!
    Been there done it doesn’t come close.
    Thank Goodness for hospitals that listen before reacting!

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    • And for good friends and family and a support system. How do people endure without it, I wonder? They are the ones who fall through the cracks, I guess. But, like you, I’ve had quite enough testing, thank you very much, can we please just move on now?!?

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  14. I started to weep and then got to Jen’s comment and burst out laughing. She’s a cracker!
    It’s good to share the REAL stuff and I hope it helped to write about it. (I know it always does for me.) Beautifully told, Barbara. And I LOVE that sweater! (Or, in local parlance, that jumper. 🙂 )

    Liked by 1 person

    • Honestly, you Aussies and your weird words. Crikey, mate! But seriously, I thank you abundantly for your very sweet comment, H., chuffed that it meant something to you! It does help to write about it and have such a responsive blogging community to help work through it all. I know you know this very well.

      Liked by 1 person

  15. joannesisco says:

    Today is a weepy day … I seem to be crying at a lot of stories, including this one. Jen’s comment made me laugh too … it sounds like a Hollywood movie script, but real life is so much scarier.
    Thank you for sharing your story. I’m sure it’s been very painful for you – and the sweater is a priceless object that you will never want to part with 🙂

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    • Well, Joanne, maybe we’ll get all the weepy stuff out of the way in one day and have some fun for the rest of the week. I’m glad you got a kick out of Jen’s comment; never in a million years would I have guessed that’s what would come out of her mouth!!

      Liked by 1 person

  16. bkpyett says:

    Dear Barbara, thank you for sharing such a powerful and moving real life story. What miraculous two words to bring that smile back to your face. One can hear the love in your voice and the hope. Sending love to your family! ❤

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  17. Oh. I don’t know what to say…except thank you for sharing this.

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  18. nrhatch says:

    Nice Sweater! Definitely a keeper. So glad Jen rallied “at the wire.”

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  19. reocochran says:

    You know this meant a lot to me, knowing you as the fighter and defender of your daughter’s rights and how you would take this to the limit, as far as it could go. Then, thank God! intervention and healing progressed, somewhere in the machinery of her mind, and humor blessed you with those comforting words, “Nice sweater.” Sarcasm means brainwaves and hope, which you leave us with the positives, less of the nightmares of this period of time, which the nurses and doctors, inside their heads at least, should have respect for what you did and who you are, Barb! Wow!

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    • The nurses and doctors were “gobsmacked” to use a really arcane word when Jen came out of this. Nobody thought she would come of it functioning at any level. The “nice sweater” story is one tiny chapter in a very long saga. Here and there are nuggets of what I learned through the process and will share as I can bear to. I have to say that one thing I have come out of this ordeal with is a huge appreciation for the profession of nursing. There are some remarkable unsung heroes doing work as nurses out there. Heroes among us, Robin!

      Liked by 1 person

      • reocochran says:

        Nurses are ‘unsung’ heroes, you are so right, Barb! Parents like you are special and true to their children, helping and staying all kinds of hours. I did not ever go through what you did, but my youngest daughter was diagnosed with JRA while 12 years old. I wrote and entered an essay about why she was my hero, while a teenager, who worked, played in sports and never complained, while daily facing pain. We won tickets to see a movie and a small gift card for dinner. We went to Children’s hospital for 9 years, having blood tests, MRI’s on her swollen arthritic joints and quarterly meetings with OSU who was doing a ‘case study’ on her. She is on less meds, but still has the joints of a “65 year old” according to her rheumatologist. (She is 28 years old.) We do what we need to do, hoping that more and more of her abilities recovered for your sweet Jen! Hugs!

        Liked by 1 person

  20. Jodi says:

    So my sweet Barbara, I have to start out by saying I’m not a huge fan of that sweater 🙂 LOL!!! But you know I am a HUGE fan of YOU! I am so glad you chose to write this. It is a part of you that makes you so special, and there is so much I want to hear and know about this side of you. I know you have said you want to write about happy things, and I respect that, but I long to hear this story. I just know there is something in it that has endeared you to me, that makes you so special, that has given you enlightened purpose in your life, that has brought you friends and joy and love amidst what grief you must also bear. As a mama, I don’t know if I can even imagine the sorrow you have endured. My heart breaks for you to have gone through this experience (and continue to), but my soul admires you so greatly. You are a very special lady I dare say I have grown to love though we have never met in person (yet!). Crazy – eh? Ok – whatever! Sorry – it’s just me….. Oh I am rambling, but I am so touched by this post. I am so glad to get to know you more. And life is so much more than hyacinth beans (but I can’t wait to plant mine!) The crazy roller coaster of emotions we call life! xxoo

    Like

    • That’s okay, Jodi, you don’t need to be a huge fan of my sweater as long as you are of me! I can accept that!! It was one of those “when in Santa Fe” moments that seemed like a good idea at the time. Who knew it would end up one of my priceless artifacts? I came down the stairs wearing it a few years ago and Jen said I like that sweater. I had to smile to myself thinking “I know, you’ve told me that before!”

      No one post could begin to encompass the terrible things that have happened to Jen. It is really tough to write about and I will do it when the muse strikes. And you’re right, of course, that this ordeal has brought me friends, joy, love and more that I would never have known otherwise. As you say, a crazy roller coaster of emotions called life. Thanks for all your words of friendship and support; it means more than you know. XXX

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  21. Sue Mayo says:

    I love you Barb! I know all to well how we must be advocates for those who can’t speak for themselves. The sweater is a keeper for sure. FYI….Jen is doing great playing Words with Friends with me.

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    • That’s so great to hear, Madam. To imagine her as she was in this post and now able to play with “Sue Mayo”!! Huge strides!! It’s so funny to me that you are never just “Sue” to her, always both names. I guess we’ll keep “Madam” to ourselves. And I love you too!!!

      Like

  22. For some reason, I can’t see the picture of the sweater, just a large empty square….but that’s ok. It’s the story that makes the post. I knew you had a daughter with medical challenges but I had no idea how involved they were. It is heart-wrenching to see a child (no matter what age) to go through such difficult times. I think it is important to write about this, even in a blog full of garden flowers and westies…so many people can relate to these emotions, so many people are caretakers to others….and your sense of humor and inner strength comes through.

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    • Ahhh, Annette, your message is very reassuring to me. For the most part, I love my blog to be an escape from it all, albeit temporarily, and a place for me to something other than the caretaker of a disabled person. But every once in a while, I will “go there” as I can stand to. The sweater, when I pulled it out of the closet, kind of beckoned for its story to be told. Thank you so much!!!

      Liked by 1 person

      • I feel the same way about my blog – I want to focus on beauty as a reminder that it can trump the ugliness in the world. And every once in a while, I will “go there” too because I just can’t help myself 🙂 I am so glad you told this story.

        Liked by 1 person

  23. Oh, and now the sweater showed up, just took a long time loading (it’s my slow computer at fault). “nice sweater” 🙂

    Liked by 1 person

  24. Betsy Jones says:

    I can tell Jen has your personality and determination!! Your gut is always right when it comes to the ones you love.Stay strong and love to you and Jen💜

    Like

  25. purpleviolas says:

    Hi Barbara I stand in awe of you and all other mother’s who have children with some kind of special need . You are the ones who never give up and see the real person who is hiding inside a body which is not functioning as we think it should. I meet them everyday at work and never cease to be amazed at the resilience and courage of these parents. I salute all of you.
    Check out this website if you are interested http://www.babytherapy.org.za

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  26. Tears to the eyes, yes…

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  27. Barbara Stevens says:

    Heart breaking and heart warming, Barbara. I read every comment and am so impressed with the kindness and wit of your followers.
    What can I do to help, besides pray?

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  28. kristieinbc says:

    Beautifully told. This post was both heartbreaking and heartwarming. It was, indeed, a nice sweater.

    Like

  29. dorothy says:

    Beautiful sweater..even more beautiful as a wife. Mother, and friend. You have always shown such strength in meeting your challenges head on. You are a fine example for the world to follow when it comes to being an advocate for someone who can’t defend themselves, Barb, and Roger too, we all salute you.

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    • Dorothy, you do what you have to do in this life and you are a fine example of that in everything you have done and continue to do. Your family wouldn’t be what it is without you and you are always a huge source of strength and inspiration to me. Always.

      Like

  30. Eliza Waters says:

    I am staggered by your story. It is amazing to me the challenges that people face every day and come through to the other side. What strength that comes from deep within, faith and love truly conquers all. You are an incredible inspiration, Barbara. Blessings.

    Like

  31. Chris DuHadaway says:

    God bless you have to find humor in between the tears. God has a sense of humor.

    I am @Christineconleydu from Instagram. I’m finally getting blog savy. ^~^

    Like

    • Hi Chris, thanks so much for popping over into the blog world. I don’t usually write about such heavy stuff, never fear. Mostly we just have fun! And yes, humor helps keep it all in perspective. So nice to see you here!

      Like

  32. I understand you not wanting to write about this, but you have such a way with words. Tears are rolling down my cheeks thinking of everything you have been through with your Jen. You bring us back to reality and make us count our blessings.

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  33. I was in tears until I read Jen’s comment: “Nice sweater.” It’s a phrase my grandkids joke about when they’re noting an awkward moment. A lovely diversion. (And your sweater is beautiful.) As you say “life is not all hyacinth bean vines and cute little Westie boys.” It’s good to hold on to those beautiful moments and to rejoice when a celebration is called for. My best to Jen, to you and your family. 😉

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    • You are very kind, Judy. I know your daughters are my Jen’s age and I believe you have a Jennifer as well. I was hoping to tell this story more as an example of keeping hope through tough times. I think I need the reassurance more than many of my readers! Thanks for you wishes to my Jen and the family. I’ll try to lighten the mood for a while!

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      • Yes, we have two daughters: Danielle and Jenn.

        Barbara … Don’t fret about sharing your stories. We often grow stronger as a result of those tough times, and the stories can help others. When I go to the ‘wayback machine,’ I hope that my experiences help someone else – even if they are only benefiting by my bad choices. 😉

        Liked by 1 person

  34. Phil Taylor says:

    Wow! What a story! You brought a tear to my eye. Yes, it is a nice sweater and I hope you still have it.

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  35. suzicate says:

    Beautiful and touching story. Jen has good taste like her mother…it is a nice sweater.

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  36. cat9984 says:

    “Mother’s instinct” is a wonderful thing.

    Like

  37. Ellen Hawley says:

    I want to leave a comment, but I’m left nearly wordless. “Nice sweater” kind of says it all.

    Like

  38. ksbeth says:

    thank you for reading and following my words and i love your story of refusing to give up and never losing hope. it is a triumph of the human spirit. best, beth

    Like

  39. Outlier Babe says:

    Oh, Barbara, I wound up at this post first by mistake this morning when I searched for “Silver In the Barn” and “epilepsy” (because your comment’s link to the other E/R epilepsy post about Jen wasn’t hypertexted, and cut’n’paste is too awkward with Win 8 and my friggin 7th tablet-slash-notebook).

    I cried twice.

    First, when Jen awakened with those magical words. I was bawling. “Nice sweater” will forever have special significance to me. How much more so to you!

    Second, when I saw the sweater. I was laughing so hard, Barbara! Oh, dear, I am the rudest thing on the planet, because no one with an ounce of human decency could respond to a post like yours with a comment like this: I absolutely hate the sweater! I couldn’t stop laughing because of it. I can’t ask for your forgiveness, because I could have kept this obnoxious information to myself, had I not wished to share it. But it was too much not to share–and with whom else could I?

    I am sure the sweater is beautiful: For heaven’s sake, IT SAVED YOUR DAUGHTER’S LIFE!! Jen thinks it’s beautiful, as do you, and all your readers. I am a tasteless party of one (and a horrible person). It is my Aspie aversion to certain shades of orange and yellow, together with a feeling of discord at the jagged edges of some Southwestern-themed zig-zag motifs (as if they are scraping my vision), that likely leads to my dislike of an innocently inoffensive garment.

    But there I was, immersed in deepest gloom and sympathy with you, then so hugely relieved and uplifted when Jen arose from the near-no-longer…

    …only to see that the source of her salvation was, to my addled autistic perceptions, the equivalent of a double-knit polyester muumuu.

    Please, please, forgive me for laughing inexcusably at such an inappropriate moment due to my obviously-poor taste in sweaters. I’m sure it is a very nice sweater.

    (But when I come to visit you, promise me you won’t wear it.) (

    [I’m ducking and running now.]

    Like

    • You rotten woman! I am laughing too. You know what they say about true friends saying the bad things to your face and only good things behind your back! It’s quite all right, my darling, the sweater was purchased in a Southwestern delirium brought on by our ill-fated trip to New Mexico on September 11, 2001! That sweater has so much significance to me between that and Jen’s comment that, ugly or no, it will remain with me forever. Maybe I’ll even stipulate that I am buried in it! I promise not to wear it when you come to visit!! You rotten woman!

      Liked by 1 person

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