Deepest Chambers of the Sea
Well, as you know, this post finds me on vacation. It seems unfair to fail to mention all of the great things that have happened in the past week: Don's parents and their lovely anniversary party, Lacey's 18th birthday, the first day of summer. Unfortunately, it was tempered with some very difficult moments, of which I will reserve explanation for another blog.
We left our house at 9 a.m. Saturday morning -- or I guess I should say, we TRIED to leave our house at that time. "Hey kids," I said happily, "Wave good-bye to the house!" "Good-bye, house," they echoed excitedly. Don turned the key to start the van and -- NOTHING. He tried again -- UH-OH. The van was packed so tightly with people and stuff that you couldn't possibly shove a toothpick in with us, and now it would not start. To make a long story short, we called Autumn back to the house to jump the battery, then had a picnic of sausage biscuits and orange juice on the Auto Zone parking lot while Don purchased and changed the battery. (Note to self: No celebration until we actually LEAVE the house next time!)
The trip went well, all things considered. The hotel was equipped with an indoor pool for the kids and wonderful handicap-accessible roll-in shower (complete with fold-down shower seat!) for me. I sat on the bench for a long time, letting the warm water flow over me. Today passed in a whirlwind of travel. The kids traveled very well, with very few difficulties (unless you count convincing Zach that he could NOT bring a piece of bacon from the restaurant in the his pocket to "feed the fish"). We arrived at the house around 3:00, looked around, and then Don and I headed up to the airport to get Josiah. I was so happy to see him that I couldn't stop crying. The airport was a couple of hours away, and his flight was delayed, and Don took an unplanned detour on the trip home. It was 10 p.m. by the time we got back to the house.
By this time I was hungry and exhausted, but still determined to see everyone who arrived after we left for the airport. Eagerly, I sat down on the bottom step of the lowest level of the house, where our bedroom for the week is located, and began the slow, agonizing scoot-and-pull routine to get up the steps to the main level of the house. As I reached the top section of the curved staircase, my strength began to fail me. Two days of hectic travel and the week of non-stop preparations finally got to me, and I sat there exhausted, unable to go any further. Andrew and Josiah were below me on the steps, looking up in horror as I tried and failed to pull myself up another step. Above me, Mom and Aunt Mim fought back tears from the kitchen table as they watched my struggle. Desperately, I willed myself up the last two steps and dragged myself across the carpeted floor to the landing where I tried in vain to pull myself up to get in my chair. Josiah and Andrew finally joined me on the floor, helping as usual to normalize the absurdity of my life. Amy even snapped pictures of us smiling from the floor. Someone brought me a drink and a piece of pizza. Later, when I finally found my second wind, Don and Tabitha helped pull me up to get in my chair.
No one spoke out loud about my public humiliation, but I'm sure it will be the subject of many whispered conversations henceforth. I found myself wishing (like so many times in my life) that I could just be invisible. Then no one would have to see me dragging myself up steps or pulling my useless leg across the floor just to be with everyone else. Maybe I could I just be a spirit, and that way I could float effortlessly from floor to floor or down to the ocean like everyone else -- or a delicate butterfly, so they could smile as they watch my colorful flight from room to room. Instead, there I was, trying hard not to cry in front of my whole family tree who have assembled here for a vacation, not a circus side show. (Come, see the bald-headed woman with the tumors on her head as she makes her way up the carpeted steps to the main level of the house. It's horrifying! It's amazing! I promise you, you've never seen anything like this before ... only $2 to see the crazy woman butt-scoot up the stairs!)
Later, when they gathered on the screened porch to listen to Josiah's songs, I watched them for a while through the glass door. I wanted to memorize them in their happy repose for later, when life intervenes and scatters us all again. While the final strains of "Believe in Heaven" played, I returned, alone, to the steps and dropped quickly to the floor so that no one would have to witness my equally agonizing descent. Down, down, down to the ground level floor I scooted, to where I could hide in my bedroom for a good, long cry about the sorrow of children growing up, life winding down, and the extraordinary struggle that my body requires to do things that everyone else takes for granted.
Still, I am here, and the view from the level above me is utterly breathtaking. Like all the beautiful things in my life, it is worth the struggle to see it -- to feel it -m to experience this moment in time with all of us together in a place that usually only exists in my dreams.
:-) Sharon
We left our house at 9 a.m. Saturday morning -- or I guess I should say, we TRIED to leave our house at that time. "Hey kids," I said happily, "Wave good-bye to the house!" "Good-bye, house," they echoed excitedly. Don turned the key to start the van and -- NOTHING. He tried again -- UH-OH. The van was packed so tightly with people and stuff that you couldn't possibly shove a toothpick in with us, and now it would not start. To make a long story short, we called Autumn back to the house to jump the battery, then had a picnic of sausage biscuits and orange juice on the Auto Zone parking lot while Don purchased and changed the battery. (Note to self: No celebration until we actually LEAVE the house next time!)
The trip went well, all things considered. The hotel was equipped with an indoor pool for the kids and wonderful handicap-accessible roll-in shower (complete with fold-down shower seat!) for me. I sat on the bench for a long time, letting the warm water flow over me. Today passed in a whirlwind of travel. The kids traveled very well, with very few difficulties (unless you count convincing Zach that he could NOT bring a piece of bacon from the restaurant in the his pocket to "feed the fish"). We arrived at the house around 3:00, looked around, and then Don and I headed up to the airport to get Josiah. I was so happy to see him that I couldn't stop crying. The airport was a couple of hours away, and his flight was delayed, and Don took an unplanned detour on the trip home. It was 10 p.m. by the time we got back to the house.
By this time I was hungry and exhausted, but still determined to see everyone who arrived after we left for the airport. Eagerly, I sat down on the bottom step of the lowest level of the house, where our bedroom for the week is located, and began the slow, agonizing scoot-and-pull routine to get up the steps to the main level of the house. As I reached the top section of the curved staircase, my strength began to fail me. Two days of hectic travel and the week of non-stop preparations finally got to me, and I sat there exhausted, unable to go any further. Andrew and Josiah were below me on the steps, looking up in horror as I tried and failed to pull myself up another step. Above me, Mom and Aunt Mim fought back tears from the kitchen table as they watched my struggle. Desperately, I willed myself up the last two steps and dragged myself across the carpeted floor to the landing where I tried in vain to pull myself up to get in my chair. Josiah and Andrew finally joined me on the floor, helping as usual to normalize the absurdity of my life. Amy even snapped pictures of us smiling from the floor. Someone brought me a drink and a piece of pizza. Later, when I finally found my second wind, Don and Tabitha helped pull me up to get in my chair.
No one spoke out loud about my public humiliation, but I'm sure it will be the subject of many whispered conversations henceforth. I found myself wishing (like so many times in my life) that I could just be invisible. Then no one would have to see me dragging myself up steps or pulling my useless leg across the floor just to be with everyone else. Maybe I could I just be a spirit, and that way I could float effortlessly from floor to floor or down to the ocean like everyone else -- or a delicate butterfly, so they could smile as they watch my colorful flight from room to room. Instead, there I was, trying hard not to cry in front of my whole family tree who have assembled here for a vacation, not a circus side show. (Come, see the bald-headed woman with the tumors on her head as she makes her way up the carpeted steps to the main level of the house. It's horrifying! It's amazing! I promise you, you've never seen anything like this before ... only $2 to see the crazy woman butt-scoot up the stairs!)
Later, when they gathered on the screened porch to listen to Josiah's songs, I watched them for a while through the glass door. I wanted to memorize them in their happy repose for later, when life intervenes and scatters us all again. While the final strains of "Believe in Heaven" played, I returned, alone, to the steps and dropped quickly to the floor so that no one would have to witness my equally agonizing descent. Down, down, down to the ground level floor I scooted, to where I could hide in my bedroom for a good, long cry about the sorrow of children growing up, life winding down, and the extraordinary struggle that my body requires to do things that everyone else takes for granted.
Still, I am here, and the view from the level above me is utterly breathtaking. Like all the beautiful things in my life, it is worth the struggle to see it -- to feel it -m to experience this moment in time with all of us together in a place that usually only exists in my dreams.
:-) Sharon
posted by Sharon | 12:02 AM
9 Comments:
My thoughts are with you Sharon...
You did not ask for this and I so wish I could help you with more than a joke. But this is your story, your legacy and your spirit to pass to your children along with the rest of us. You have been chosen to lead us all down this road with you.
I can't feel your pain and I can only imagine your sorrow. But what I can do is witness your strength and revel in the love and compassion your family feels for and with you. When Josiah and Andrew were down on that floor with you their hearts were opened wider than most people's ever could. Because of your struggle with this horrible disease they have learned so much about the fraility of life. You've taught them to breathe in that salt air long and deep, while feeling the sand squish between their toes. They know to take a moment to see, to hear, to feel and taste. While the rest of us are busy complaining that there's too much seaweed. It may not always seem that way, but I know that that spirit is instilled deep in them just from loving you and living with your strength.
Love from Judy
Good Lord, woman (and He is good, that is for sure) do you not see just how much courage and strength you display by doing what you do???
You are not a freak show or a recipient for pity. You show a spirit of determination and love that just blows me away-and I suspect I am NOT the only one!!!
YOur children are so blessed to have you for a mom.
oh, it'll be the subject of many conversations henceforth alright, but maybe not in the way you presume.
i'd bet my bottom dollar that the humiliation you speak of won't be the focus at all. rather, the wonder of your grit and glorious insistence on full participation will be the theme. THAT'S what stands out most ... not the scooting, or the help you needed to get into your chair, etc. my gosh, just your agreeing to go knowing the house had stairs you'd have to negotiate says so much about you. your ability to shed any silly sense of ego or stubborn pride is key ... for all of us, in all manner of situations. enlightenment is yours, sharon, and will continue to be.
that 'pizza for three' on the floor was a 'picnic of love', so pure and so great in its breadth that i hope it was able to lift, if not your body, your spirit to great heights.
i hope this vacation offers joyous and precious moments, for you and for those around you, to enjoy and savor now and always.
I love you Sharon. You are a much more beautiful woman than you will ever know. Love Shell
I just read something about Josiah that could certainly be written of you as well, dear Sharon.
"He has an extraordinary gift for turning his experiences into art."
You may be thinking I've truly lost my mind for comparing your illness and the struggles that brings to "art." Well, the way you write about your days is purely art. Your strength is your art, as is your family and the love you have for each other.
With each word you write, you paint a dazzling picture for us to be able to see, feel, and otherwise share this love.
I promise you this, no one around you thinks of you in any way but the strongest person they know. It's just that they don't wish to acknowledge it. It becomes too real for children so they pretend Mom is just fine--however you are is just fine.
I hope this makes sense.
Big Love,
Debra
Dear Sharon
Your words "the sorrow of children growing up and life winding down" are pretty powerful, and utterly heartbreaking.
Let me convey:
While you're here Sharon, while you're living this life and spending each day you are shining brightly. You are casting the light of your very essence and of lasting love on your husband and children. The glow that remains will act as a beacon to your family and will help guide them throughout their lives. It's a light that will never grow dim or cold, but will continue to blaze on and be passed along to you children's children and beyond.
That light is already in their hearts, as theirs is in yours, and will be entwined together for all of eternity.
Your strength is admirable. I know it may not feel like strength--rarely are we aware of how strong we are 'in the moment'--but that's how it is seen by so many of us.
6 or 7 days and no blog. YES......it means you're feeling good.
L,
J
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