“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the saying, “I will try again tomorrow.” --Mary Anne Radmacher
Jul 092010
full-size-kayl-asleep-mth-6_0

peace…

*(grandbaby, photo taken by her grandma)

May 252010

Last night as I was falling asleep, my husband had the TV tuned into the History Channel.  I listened to the narrator tell of how an astroid or comet, can enter a solar system and strike one planet.  If this adds enough extra mass to that planet, it can change the orbits of the planets around it.

Is that life or what? Start at the universal level and bring it right down to earth, to its ecosystem and then to us human beings (who are pretty good at throwing in metaphorical comets of weighted change–  current example, the oil spilling out into the ocean and gulf stream).

The influence of a change on one, affecting those in near proximity, goes right to human relationships and through to the individual.

Okay, so in my little family solar system since the addition of three members into the household, I have decided that we have been impacted by weighted change and that it has reset orbits.  Some have fallen smoothly into their new rotations and others, like myself, who is slow to transition, is still in free fall, hoping a new orbit is waiting nearby for me to land in.

Out of reach, but in sight are my routine, my laptop, my cell phone, my feeling of comfort and security, even chunks of my identity,…they’re there I can see them…now I’m waiting, falling, waiting, hoping when I land they will all be near, and I can pick them up again…most likely in a new configuration, but in an orbit, I can count on.

Yes “count on”, the “false sense of security” we need, that things will stay close to the same each day.  Even though asteroids and comets fall through solar systems, even though nature is unpredictable and our bodies fragile…even though those of us whose fragile bodies have gone too haywire to be “counted on”, we need that sense of security that helps us feel at ease. We need whatever routine and control we can put together…

At least I do.  I’m a routine freak.  Even though the state of my body has the greatest impact on my routine, whatever I can control and set in orbit, feels like a salve that spreads across my days. This morning my laptop spun close enough to grab and to write a post.  Still, falling around me near, but out of my reach are the the new sounds of my granddaughter crying, my son asking for bleach to clean with, my explaining again, my MCS and how it relates to cleaning bathrooms (I can only tolerate vinegar and baking soda), dinners with five adults with different schedules and tastes and few cooks (I love to cook, but am most often unable to), a washing machine almost constantly full, baby products and finding one’s that are safe for baby and me, finances in flux, they’re all floating out of reach…as is the sense of false security I am longing for.

….and lemons…lemons…its hard to make lemonade outside an orbit.  So for now, I’m watching yellow lemons float by.  Imagine if they each had consciousness they’d be feeling a sense of false security…not knowing that someone is near who would like to make lemonade when she can.

How’s it going in your solar system?

May 052010
donuts-kayla-grandma

Hi, I’m the little one in the picture who is laying in the big “donut”.  My Grandma, is the big one in the picture who’s laying in the little “donut”.  My Grandma has ME/CFS.  She’s like me; she lays around a lot.  She doesn’t have a crib, and doesn’t like to lay on blankets on the floor, so she lays on her bed or on the sofa.

When Grandma’s on the sofa, she holds me with lots of pillows supporting her arms, so we can play.  We have long conversations.  I like to talk, and Grandma does too.  My eyes, she tells me, are the prettiest blue she has ever seen.  I don’t know my colors yet, all I know is that her eyes smile at me and I like to smile back.  She gives me lots of kisses (too many, but don’t tell her I said so).

I wish my Grandma could hold me longer, but her arms get weak fast and she has to hand me over to someone else.  I also wish my Grandma could sing to me.  If Grandma sings, her muscles that help her breathe get very weak, which means it gets really hard for her to breathe.  Because Grandma likes to talk a lot and shhhh-don’t tell anyone, she sang to me really softly, she had a “breathing attack”.  Everyone in the the house got scared.  I guess breathings a pretty important thing to be able to do.

My aunt sings to me.  She knows lots of songs that Grandma used to sing to her. When Grandma was a teacher, she sang and played the guitar with the kids in her class almost everyday…this means she knows lots and lots and lots of kids songs, the one’s she tells me she wishes she could teach me.  I want her to play the guitar and sing the “jump, jump, song”. My dad and aunts say it was their favorite, because when she played it, they got to jump on her bed.  I want to do that when I can jump.

Please help my Grandma sing and play guitar again.  She tells me its ME/CFS Awareness month and since I think I can talk, that I can spread the word that all the people in the world who have ME/CFS, the kids, the teenagers, the grown-ups, the parents, the grandparents, need your help so they can get better.  If you visit SolveCFS, you can make a donation that will help, or you can read about what Grandma has…that helps too.   Love,  ”the little one in the big “donut”.”

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