When I was growing up, there was a girl I went to school with, who had a habit of punching me on the shoulder and calling me a marshmallow. It was kind of annoying, but …actually, I think marshmallow is a pretty accurate name for me… sometimes. Marshmallows are soft, sugary, sweet and silly. They are sort of sweet nothings, the ultimate in frivolousness, neither nutritious nor essential, just sugar spun into fun!
I suppose we are born into this world with a particular disposition. Mine is, generally, well … marshmallowy. I am soft, too soft, most of the time. I am sensitive to a fault and easily manipulated by tears. I am also sugary. I love sappy things, books, movies, poetry, anything sentimental. I try hard to be sweet, and most of the time and it comes fairly, naturally.
Silly, well … I see that as a life goal! In my pursuit of silliness, I have dressed up in a southern belle get up (an exact reproduction of Scarlet O’Hara’s picnic dress, none the less!) to pick up family from the airport.
Every year, I host a pajama Christmas party full of silly games. I also have, along with my entertaining daughter, hot glued daisy’s onto bathing caps and goggles, and created a synchronized swimming masterpiece, to a song from Rent. Just a few examples, but obviously, silly is a large part of my personality.
Of course, like everyone else, my personality is contradictory and multifaceted. Tonight, I am between marshmallow moments. Tonight, I feel as if I am a jagged rock, heavy, cumbersome and difficult to carry. Tonight, I am not lightness and sweetness. Tonight, I am hard and heavy … I am a stone, as heavy with grief and sadness as a grave marker.
I am writing, hoping some of the deep black, sadness will flow from my heart, thru my bloodstream, into my fingers, then leave my body and float, invisibly, into the air. Once the thoughts and words released, I hope I will feel lighter and able to breathe.
I cannot think of one part of Dennis’ body that is not falling apart. This week he fractured his ankle … a guy who can’t walk broke his ankle! This is so ridiculously unfair. I find myself recoiling inward in pain.
We also saw a place on his bottom that has lost its protective fatty layer. The skin on his body is wearing thinner, and thinner becoming almost translucent. Bruised and battered, torn, and cut into so many times, it is losing its ability to regenerate.
It is all going, yet … his brain and heart continue to carry on. The vehicle for his soul is breaking down, and my heart is breaking with it.
Last night, right before he fell asleep, Dennis said: “My compass has nowhere to point.” He is finding it difficult to use his passions and gifts, without a working vessel to execute them. He feels like a useless, burden. I am hardly the first person to walk this path with someone. Tonight, however, I feel entirely alone. Alone in the way, even if the house were full of friends, I would be alone. Inside of me, there is no silliness, just solemnity.
Sadness for the eternal cycle of loss and grieving we must all endure on this earth. Sad to see the man I love hurt so deeply, on every level possible. Sorry, my power to make him feel content is weakening. I can see it when he looks at birds flying in the sky, that more and more often, he is longing to escape the prison his body has become, and fly free like the birds.
Dennis’ ultimate healing will be my heartbreak, and I fear the pain intensely.
These are the moments between hope and joy where I go to somewhere extremely lonely; that place is … despair. Why … must everything end? Why … must things be so very hard right now? Why … can I not lay down this calling just for one day, and then pick it up again when renewed? Why … is this not happening to someone who deserves it? Why … does it take so much sadness to bring such clarity? Why … does it sometimes seem no one cares?
Tonight is a night for grieving and exorcizing pain. These nights do not come often, but when they do, they blanket my world in grey and sadness. I used to fight these times, gloss over them with distracting, lightness, and silliness. Time has taught me to pay due to reverence to these hard moments of reckoning. They will not be ignored, they may hide, but they will be found. I attempt to shield Dennis from much of this; his battle is hard enough. Sometimes, however, the mask slips, and the tears roll down. Then I feel even worse because my pain hurts him so.
I have never regretted this path I have chosen. It’s quite freeing to know I bear no responsibility for it; all I did was answer the call. This is God’s plan, not mine, and not explaining would have been far more full of regret, and self-denial.
So tonight… this sad, lonely heart, is trying to write out the words, weighing so deeply inside me, I can no longer keep silent. These words feel sharp and hard, preventing me from joy, keeping me fearful, lying to me that this is a burden I bear alone. Afraid, angry, desperate, confused, alone, hopeless, resentful, and most of all completely exhausted. May these dark words go out into the universe and when they touch the light of love, manifest themselves into something smaller, something lighter and grander. May they become transformed into stars by which the black night finds hope and light. Something … I can bear the weight of.
Never fear, my dear ones; I will be a marshmallow again, just not tonight…
Frolicking to Fifty! 
Our hearts are breaking with you. Love, Eleanor and John.
Sent from my iPhone
>
LikeLike
Thank you, I hope we get to see you sometime soon.
LikeLike
My heart is breaking also and my tears are falling for you. I am incredibly sad that I can’t help and magically make your world all better. You are truly amazing and loved very much.
LikeLike
Thank you my friend, your friendship for all these years is my gift!
LikeLike
Thank you for sharing with us, Leana. Marshmallows also bring friends together around the fire. We’re with you, Leana. Love, Aunt Marlene and Uncle Bill
LikeLike
I wish you and Dennis could be miraculously freed of this and you all be free to fly like the birds Dennis watches in the sky. Prayers for strength.
LikeLike
You know how much my heart breaks with you. Not sure Phil knows about the ankle. I will tell him. We love you both so much and are here to help you in any way. 😘😘😘😘😘
LikeLike
Dear one – your groans are heard, your tears are seen … and in the smallest way that anyone can – your grief is honoured and shared .
Much love and courage to you in your own part of this journey Lee Lee
❤️
LikeLike
Leana,
Remember the time you stayed with us when your parents went on a trip? You were late to school because when we woke up, our farmhouse was surrounded by cows. The herd wandered over from a neighboring farm. There was a cow by the kitchen window, cows by the door and cows on the path to the car. It was a difficult situation to see, but harder to explain. Later that day, trying not to think of cattle, I navigated down that drive to Balmoral Hall, past the Lincolns and the Cadillacs, in the old farm Cutlass, looking for you. Then I saw your golden curls, hanging down, as you were upside down on the monkey bars with the Balmoral tartan over your face.
I loved my time with you. You were joy. You were happy and kind and thoughful. At that time you did not know how to move a cow.
I have read your blog. This one tonight caught my breath. You are so skilled at writing; capturing deep feeling and those moments that blur together for us and then put them down in words with such finesse and depth. You reflect and share experiences that a reader can pick segments from and relate. Although writing can be cathartic, you are left with your feelings.
In feeling your pain, I have no words.
Look up at the stars, I will be looking at the same ones.
Sending love,
Peggy
LikeLiked by 1 person
Dear Aunt Peggy,
What a treat to hear from you! I have such good memories of you! I know from experience personal experience, how sad it is when Divorce causes you to not see family you love anymore. I always enjoy seeing your posts from your country house and other pictures from Manitoba.
Don’t tell the others, but you were always my favorite Aunt, you were so good with all us kids. Just a few months ago Carrie was visiting me and we were reliving a stay we had at the farm with you. It was so much fun! , we made stuffed cats, drank strawberry milkshakes, and I guess it was fall because someone was burning fields, I still love that smell!
Thank you so very much for reading my little blog and for your lovely, kind words!
How comforting to know we will be looking at the same stars!
I hope you and yours are good,
😘 Leana
LikeLike
Dearest Leana, even with your words of despair you have created something beautiful. I hope they brought you some release and comfort. For someone in the midst of darkness you certainly shine brightly ………still. Much love from your wayward friend, Georgia xxx
LikeLike
Please please keep the faith. It’s such a devastating disease- not fair to any of you. I love you both and if I can do anything at all for you and Dennis please don’t hesitate to ask. You two are such an inspiration to me.
BIG HUGS to you both💗💗
LikeLike
Leana,
I have known Dennis since kindergarten. Our moms were friends. I moved away in 1976 but still kept up with Dennis from time to time. Always smiling & happy is the Dennis I will always remember. He told me about you & how lucky he was to have you in his life..it was Gods will for sure. Keeping you in prayer as you navigate the days ahead. Stay strong & keep the faith.❤️🙏🏻
LikeLike
Not only do your words reach so deeply into all of us, you have surrounded yourself with friends & family who equally resonate your passion and sorrow. Reading the replies from your loved ones brings tears to my eyes, as they demonstrate the deep love we all feel for you and Dennis. I am so sorry these times of despair are coming more frequently. I am, however, so grateful you aren’t hiding behind the marshmallow. I love you, pray for you and will always be here for you ❤
LikeLike
WOW, what a deeply touching story of laughter, love, and unimaginable struggle. Your words reached out to me on so many levels! I too have known Dennis since kindergarten, went to the same church and we were there if the doors were open! I remember Dennis as the life of the party , outgoing and fun! What a great match as you describe yourself with those same qualities. I hope you tell your great stories and laugh together over and over ! Soak in the love and support from your friends. I wish for you and Dennis the ability to rise above the pain and struggle if only for a time each day to breathe , renew your mind and spirit and go forward with the strength to face another challenge . May the universe open the sky as you imagine flying high ! Leana, I hope your dark nights pass as joy comes in the morning ! Thank you for sharing your heart. I will think of you both with hope and love .
LikeLike
Soft, sugary, sweet, silly. Yes, that describes my memories of you Leana during our college days. I am so glad to hear that you haven’t stopped dressing up, creating special, fun moments no matter what life brings you, and having a heart so big that everyone around you feels your aura. I am so sorry that you are going through a painful time, which seems to go hand in hand with loving deeply, sadly. My memories of marshmallows as a kid includes pulling them into strands to make taffy, which tells me that marshmallows are also strong and resilient, and can transform under pressure into something strong, stretching far beyond what you might think. I can’t wait to see you next month, my friend, it’s been way too long. My thoughts are with you and your family. Colleen
LikeLiked by 1 person
What an amazing analogy! And I’m the one writing? See you soon 😘
LikeLike
Keeping you and Dennis lifted up in prayer daily. God is walking this journey with y’all. His grace is sufficient. Give Dennis my love. Wanda (Breeden) Levan. ❤️🙏
LikeLike
Thank you so very much for your prayers and encouragement!
LikeLike
Leana,
Your positivity always amazes me when you come into Ipp’s. I seriously pray I can be more like you and positive when I don’t want to be. You are such an inspiration and your bravery in writing this is unparalleled. Thank you for sharing, my prayers are with you and Coach.
Love,
Alyssa
LikeLiked by 1 person
Awwww, that’s so very nice of you to say! We all struggle to stay positive, the trick is to have a great support system, find a way to manage your feelings in a positive way, then pray 🙏🏻, pray 🙏🏻Pray🙏🏻. 😘
LikeLike
Thank you so much, sweet girl! Your smiling face when I come to Ipps, always lifts my spirits. We all struggle to stay positive, so we have to lift each other up!😘
LikeLike
Feeling frustrated by distance, I want to embrace you in loving, comforting arms. You inspire me in good times and bad. Love you!
LikeLike
As do you my friend! Don’t worry, I’m good read the next post!
LikeLike
You and Coach Conway have always been an inspiration to my family thru laughter, trust, hard work and love!! You two have it tougher than most but shine above the disease that is dibilitating Dennis’s body but not his mind and soul. Y’all are shining stars in our world!! Whether it’s a good day or a dark one there is concern and strength being shared. Thank you for your ability to voice your deepest feelings as that is often hard for me. The joy is not as sweet without the struggle! Love and hugs to y’all!!
LikeLike
That means a lot to both of us Pam. You may struggle with expressing your deepest feelings, but your face always always radiates love and beauty. Thanks for the encouragement 😘
LikeLike
Just stumbled last night on your featured article in “Woodstock”. When I read this, I could have crawled through the computer to hug you and say “hello, sister”…my husband is wheelchair bound too from CIDP (evil stepsister of ALS) and now is loosing his upper body use. Our laughable moments are similar…our despair an echo. Thank you, thank you for all you share. We’re right off Rope Mill at the round about, and hope to run into you both soon. Well, you have to take that comment literally.. my husband likes the fast settings on the chair….
Wishing you all the best!
LikeLiked by 1 person
Well hello sister caregiver! I’m so glad you found me! I looked up CIDP, … wow, that’s a tough card to draw. I never really like it when people tell me they are sorry Dennis has MS, I’m not exactly sure why but somehow it doesn’t seem to fit?, so I won’t say it to you. What I will say is I wish you all the courage and strength you will need for this journey.
It does give me comfort to talk to someone who really understands being in the passenger seat of such a miserable disease.
I’m sure you will see us around, please stop us and introduce yourself! I would love to chat with you, and perhaps, we can help each other with resource and support ideas.
Thanks so much for reading, and taking the time to message me!
Leana Conway
LikeLike