What’s one more click in your day of endless clicking? and hey, maybe someday, you’ll need me to click something for you… 😉 { a you click my link, I’ll click yours sort of thing!}
“Rainbows are visions, but only illusions,
and rainbows have nothing to hide.” ~ The Rainbow Connection ~ Muppet Movie.
Who doesn’t love a Muppet?
I’ve had a mad-crazy inter-species crush on Kermit for as long as I can remember. A frog with a great sense of humor, who can sing, strum a banjo and be confident enough to not wear pants. That’s the guy for me.
I owe today to my beautiful daughter, Natalia who never lets *me* hide no matter how bad the going gets and who never fails to bring color into my life.
I will always treasure the laughter that we shared today.
{And to my friend who exists only in my computer, I hope you find the end of your rainbow someday too, it sounds ever so incredibly decadent. -Thank you for reminding me to look.}
“Who sees the human face correctly: the photographer, the mirror or the painter?” ~ Pablo Picasso
Sometimes , when you have a chronic condition, you have to make choices on what gets your energy for your hour, your day, your week. There’s been something written about this that’s circled the globe a few times called “The Spoon Theory” ~ I use it when I have to explain to my new friends or even to reiterate to family why I sometimes can’t do more than a certain amount of things in one day. Why sometimes choosing to take a shower and straighten my hair means I can’t drive later that day. Or why driving and running errands means I won’t be cooking later that evening. I just sometimes run out of spoons. I was afraid today was going to be one of those days. My family often ‘forgets’ that I am sick. Which is fine with me, because I sometimes do, too. And there are many times that I would just like to forget , as well. Though there are many , many times that I wish I *could* just forget.
I had lunch today with my parents and 2 amazing women from Blue Cross. They brought a giant basket filled with goodies for the Chinese Auction at my upcoming benefit. But more importantly, they brought themselves.
Getting to the lunch was challenge of the day #2. I had already showered (challenge #1) and skipped the hair straightening because I knew I had to drive. Driving is not easy for me for many reasons. I’ll spare you those. So into the car I go. I am currently driving a 1995 Volvo. It does not have working air conditioning. Understand that I am completely grateful to have a car at all. Having no air is not a big deal for most healthy people. It is usually just considered an inconvenience. For me it is like asking for trouble. Here comes challenge #2. Moving air hurts me. And I can’t really expect healthy people to understand that. Wind hurts.Fans hurt. If you ever had a toothache maybe you can understand. Picture a giant full body exposed tooth. And the wind blowing against it. It’s *kinda* like that. Or an open wound. And not only does the wind from those rolled down windows hurt me, the noise that it makes is beyond painful.( I had mentioned in a previous blog that my nervous system interprets some (most) noises as pain.)My body also does not do well at regulating extreme temperatures so leaving the windows up and just toughing it out is not an option either. I would boil. But off I went.
By the time I arrived at the restaurant 20 minutes later I was not a happy girl. I was in pain. Lots of pain. Seeing my parents always helps me to forget that a bit. I’ve got amazing parents. They are kind, generous, loving people. They are still so very in love after 45 years. My father has been battling severe heart disease since his late 30’s- and my mom , diabetes. They have taught me how to fight. How to be brave. And I know that seeing me sick hurts them. So I smile as hard as I can when I am with them. I don’t ever want to be the cause of more pain for them.
Challenge #3. Chairs. Wood chairs. I shift, shuffle, get up and down an awful lot.
Challenge #4 Temperature of the restaurant. It’s cold in here. I brought a jacket. I’m already wearing a cami and a sweater. ( I couldn’t over dress because of the car….). I also always have soft socks and gloves in my handbag. Don’t worry, they get switched and washed often. Usually when I have to bust the socks out I pray no one can see under the table. After 12 years I’ve gotten less vain about this, but I’m still vain.
Challenge #5 what to eat. My immune system has changed so much since I’ve gotten sick and since I began treatment. I was never really a big meat eater now I am allergic to shellfish and nuts. Plus I have a lot of weird food hang ups. ( that’s a whole other , oddly entertaining blog). My digestive system has been affected by my disease so I have to be really careful with what I eat.
Challenge #6 As we said our good byes outside I heard the telltale whistle of the train. the restaurant was right next to railroad tracks. the noise! the vibrations! I thanked our generous guests and hugged and kissed my parents and got in my car as fast as I possibly could. ( which isn’t really fast).
Challenge #7 Back in the non air conditioned car for Challenge #8 more driving.
REMEDY: Picked Nick up from school and my day got immediately better. My son’s smile can turn my worst day around in a flash. His dimple! I needed it today like a drug addict needs their fix. But he was leaving me .. so it would be only a momentary high.
I need down time every day or I get pretty crabby. And a crabby Hope is not someone you want to know. ( ask my kids). But it didn’t look like I was going to get any today. Not even 15 minutes. I was heading straight to crabbyville -in the fast lane.
Challenge #9/10 back to the car, back to the drive.
REMEDY: My Natalia. have you ever met someone who is so effervescent that their mere presence changes the whole essence of a room? That’s my Natalia.
I know she can sense when I am over the edge. I know she can tell when I have reached my limit. She always has this ‘way’ of just being able to push me , to help me make it a little bit further. Today was no exception. We were driving home from dropping Nick off. She found a song she liked, turned up the radio , pushed the sunroof back and stuck her hands out and started dancing them around in the wind. It was just so silly looking . So carefree. So her.
~And with that, I wasn’t thinking about my pain.I was thinking about how lucky I was. How lucky I am. And there isn’t any other place I’d rather be or any other person I’d rather be.
“You know, it feels good to be alive.”
* I did not write this looking for sympathy. I just want people to be a bit more understanding of others. A bit more tolerant. Just because someone “looks good” doesn’t mean they feel good.
And as I go to hit “publish” on this, I know that there are typos. Grammatical, punctuation and others. But it is late and my eyes aren’t working together any more – another Challenge. Almost forgot about that one.
I have always told my children, you never know what sort of day someone has had until the point that they have met with you. Give them the benefit of the doubt and if they are a bit grumpy , perhaps show them just a little bit more kindness. Kindness is one of the few things that are still free.
Today it rained. Not just rain. Think monsoon. And gale force winds +rain. (just so you know, there is also a sort of Hope who likes a good hyperbole now and again, usually more now than just again.)
I spent most of the day in the kitchen. Weather tends to make the physical me grumpy so I seek refuge and distraction whereever and however I can.
I was restless. All activities were cancelled.
My daughter sat at the kitchen table for awhile and worked on posters to put on the golf teams’ lockers. It was a job assigned to her by her cheerleading coach. Each cheerleader got a different sport. She got Golf. We giggled for a little bit when we tried to figure out that if she *had* to actually cheer for golf- what would a golf cheer actually sound like ?
( I’ll let you mull that over in your head, I’m too much of a lady to type this out. We don’t know each other well enough for that , yet.)
After finishing that homework, I was still restless. The rain continued. I asked Natalia if she would mind posing in the rain for me. I’ve been wanting to try some more editing styles.
She is always, well, usually, super indulgent. I’m a lucky photographer, I’ve got gorgeous kids.
I’m fairly certain that once again, we’ve made magic.
I know I have some work to do on some of my editing styles but I sure had fun practicing.
AND I always have fun with my best gal. This took us less than 5 minutes to prepare for but I’ve been editing for about 2 hours. ( it’s that great technology of mine again!)
I hope you enjoy them as much as we enjoyed doing this.
I can barely sit on a chair, but my daughter can *be* a chair.
those orbs just happened. that was before I actually knew how to get them there or owned PS. 😀
This is my daughter, Natalia. She challenged me to do a “glitter” photo shoot. Didn’t think I was “good enough” to do one.
Love the way I proved her wrong. She’s so beautiful, kind of helped make the photo even more magical.
allsortsofhope 