Monday, August 27, 2012

Iron Woman and Darth Vader

Everything is easier when you do it with a friend.
Living with a chronic illness is easier when you do it with a friend. I'm guessing that is why they have support groups but I never wanted to be one of those people that sits in a room every week talking about how crappy I feel.
 I would give anything to NOT have my friend be sick even tho knowing I don't face this alone is making every day just a little easier.Not many people even know I'm as sick as I am because this particular sickness is an insipid beast. It lurks. It is invisible. It is easy to fool everyone into thinking I feel fine and yet have the act of breathing hurt. Knowing that someone really GETS this and that I am not alone is bigger than anyone "normal" would understand. Somehow, my friend Jennifer forces her body to do things I could not dream of doing. She runs marathons. She is an iron woman. She is an inspiration. Instead of being overrun by this disease...I'm beginning to run IT over. This is the influence she has on me.
I was never one to really take care of myself. I forget to take my medication. I baby my muscles because I'm afraid of over exerting and suffering the next day when just a little walking would actually improve things a great deal. I eat all the wrong things. And I refuse to wear the mask. I have refused the mask for ten years now.
THE MASK. That Mother F'ing mask. How I HATE that mask.
I have sleep apnea. It is so extreme that I stop breathing more than 75 times an hour. Apparently, I'm lucky I dream at all when my REM stage sleep is disrupted so often. The cure for this kind of apea is a CPAP machine. And I have one with comfortable little (nauseatingly ugly: see ALIEN) nasal pillows and an ELITE O2 machine hooked into it so I can avoid those life changing near death episodes. Not that the first one did not completely transform my life. But I would really like to see my kids grow up...or you would THINK I would but, until Jennifer went for her sleep study and came home with her very own CPAP machine I was not wearing that disdainful mask at ALL. Ever. Even when I knew it could help. Save my life. Make me a happier, better person. It was pride, really. Ego. I feel like I'm eighty years old wearing an oxygen mask to bed. I feel UGLY. My mother made all kinds of jokes with the respiratory therapist about some very creepy role playing she thought my partner and I could make happen with that mask and although I didnt run out of the room when she laughed about it, I certainly could not laugh WITH her or envision any scenario in which that damn cpap would be sexy. Unless you find Darth Vader sexy. Or fighter pilots. Ok...Top Gun was sexy. But I'm not deluding myself that I'm in the same category as Tom fucking Cruise. I'm not even a GUY for christ sake.
Anyhow...the point of this whole rant is that I've been wearing the mask. Because, Jennifer is wearing her mask. She even sleeps next to her husband wearing the mask. The reason I love Jen is that she is so totally fucking REAL. She does not hide behind pretense. She is who she is and she does not ever seem to make apologies for who she is. I LOVE THAT ABOUT HER! She inspires me to be ok with who I am. So WHAT if I have to sleep with a mile of hose strapped to my head. So WHAT if I feel like hell and cant make my house into something out of House Beautiful. So WHAT if some of the University mothers look at me and think that my dreads are a desperate attempt to fit in with art students half my age. Why do I care what they think?
I love my friends because they TELL me what they think, even if it hurts just a little to hear it. I need to hear it. I love that kind of honesty between friends. I love that I can accept myself because I feel loved. I feel loved and appreciated even when I disappear for a month or two every so often to "cave" and get my shit together. I feel loved even when I fall asleep half way thru a party. I feel loved and appreciated for ME. I can only be who I am. And the women in my life that inspire me to use my bread machine, to grow gardens, to walk slowly and to take my time...and to laugh at myself...those women are keeping me alive. That is what sisterhood is. We hold each other up. We compare notes on our kids and our relationships and somehow we affirm each other at the best AND worst of times.
If I could heal my dear friend I would. In a heart beat. I would make sure she woke up every day without pain. But in the meantime, I'm grateful that God gave me a friend who looks like Darth Vader when she sleeps every night. Maybe we can pose for a picture in our masks someday and find it actually funny. She could do that for me.
I woke up today feeling better than I have in a long time. And she did that for me too.

Friday, August 24, 2012

Commander in Chief

Lower Manhattan is filled with ghosts and somewhere far away, vengeance is sought as satellite guided bombs light up ancient cold stone mountain caves.
But my children laugh from deep in their bellies with cherry red kool aid lips and purple sharpie whiskers on their cheeks.
It is here I find my center. In their eyes is an end to the vengeance and wars of their fathers and the bombs my children throw are rainbow confetti, glitter and phlox.
A purpose driven life. A saint, a martyr, a teacher, a Buddha. Fulfillment in having the future solidly in my hands. A commander in chief training my troops to be the boots on the ground that win the hearts and minds of the future with compassion and laughter.
My children ARE my IRA. My future IS secure. I am living a life filled with meaning. I am changing the world, tying one shoe string at a time. When I lick my finger to wipe away the slyly tasted mud pie, I am a conqueror of the universe.
There really is NOTHING I want more than to raise my children. Together, we are shaking the universe.

Wednesday, June 13, 2012

OMG is a four letter word

Chaperoning the fourth grade field trip to Letchworth State Park was an eye opening experience. I have such fond memories of riding the bus to the zoo with these same children as Kindergartners, wearing Little Princess t-shirts and velcro sneakers. In three short years they have grown into the equivalent of my own seventh grade class twenty years ago. When my junior class attended our class picnic at the same park, in the same pavilion, I saw a CD for the first time.It has been said recently that our the life are children live is experientially as different from the twentieth century as our lives were from the eighteenth century.
The kids riding the bus yesterday were sporting iphones and digital cameras. I broke up one fight between boys and confiscated an Ipod when I discovered the fourth grader holding it was watching x rated videos. The girls were catty and it was obvious which clique was holding all the cards. It was more obvious who the ring leader of the group was and she easily drew tears when her minions did not follow orders. I try to see the little girl inside and wonder if it is insecurity that forces her to create a circle around herself. If it is insecurity that persuades her to do whatever it takes to keep that circle intact. The other girls were willing to forsake their own ideals just to stay in her favor. She was the Queen and they were her ladies in waiting. When they started singing together in the back of the bus, I was able to look beyond appearances and see the children still inside of them. Until they started singing, word for word, the latest pop singles. They definitely were not singing girl scout songs. And the boys were not talking about soccer or baseball, they were discussing the latest Grand Theft Auto xbox game.

My best friend is a teacher and she told me a story about taking her class to see the famous Cleopatra exhibit in Philadelphia. In order to go on the trip, the kids were missing another activity at school that day in which they were being given cookies. The kids were bored and listless and complaining constantly that they were not getting their cookie. Our local kids don't have the chance to see such famous museums but it is quite possible that if they did, the same would be true. If it does not have multimedia or lasers or a coffee house, it just is not going to excite the kids of today. It is a sad phenomenon and I wonder why we would encourage it. All I hear is "mine" and "want" and "bored" from my children and it was not that way just a short year or two ago. Things are different now and by different I do not mean better. Don't we want them to think for themselves? Don't we want them to be KIDS?

I expect to see the high school kids sporting cell phones and Ipods but when did it become "the thing" to put expensive technology in the hands of kids so young that they cannot stop themselves from running to the edge of a cliff or into a patch of poison ivy? These days, facebook and cell phones ARE poison ivy in the hands of children too immature to think before they hit "send". When my own daughter asked me for a cell phone and told me that most of her class had one, I did not believe her. I did not think it could possibly be true that nine and ten year old kids had phones. But they do. I understand wanting to keep track of a teenager but at ten, I know where my daughter is at all times. And if I need to talk to her, I can call the parent of the child she is with. If she is at school, I can email her teacher. I don't need to search for her and I WANT her to have adults she can go to for help. It's important that she be able to talk to her teacher and she does not need me on speed dial. Being able to text me at a moment's notice may make us closer but it separates her from the rest of the world. It changes the way she communicates. It make SEEM to make her more independent but I think in fact that the opposite is true.

Texting is changing the way our kids interact. It is changing the way they socialize. My teenager can have long, deep conversations with his girlfriends on facebook or with a phone but finds he can't talk to the same girls when they are face to face. And when I try to understand them when they ARE forced to talk, they speak with abbreviations and monosyllables. OMG. WTH. LOL. I would rather have them actually laugh out loud then substitute that with a three letter word. In this case, 3 does equal 4. What we have done to our children with this so called progress IS a four letter word. Rumors spin out of control. Bullying is no longer hand to hand, it is done with the ease of a button. Kids are killing themselves over this.

I want to encourage my children to explore themselves. Express themselves. PLAY. Playing this game of who has the best phone and who has the most contacts is taking away their childhood. It was easy to spot the offspring of the parents who still believe this. They were making up games, collecting leaves, looking for wildlife and playing on the playground. Most of the boys seemed to be phone free and they teamed up to play baseball. My daughter wanted to take as many pictures as she could of a little girl with a life threatening illness and created memories that she would be able to cherish. She tried to protect the kids who were feeling sick on the bus. She was not alone entirely in this. I saw a few girls covering their sick friend with their own jackets and stroking her head to make her feel better. I saw little boys excited over holding a snake and my own daughters best friend brought home two little snails. She protected them as best she could on the ride home until another child was dared to eat one. I watched in awe as this sweet little girl bit into a snail just because the popular crew was chanting her name. She wanted desperately to fit into this group.

Bella's best friend was wearing a shirt she made herself and still had bits of face paint on her cheeks from the day before. They didn't compare labels on their clothes and they did not spend their time shooting texts. Later that day, Bella's best friend made her very FIRST phone call to our house (using her MOM'S cell phone) just to say "I love you, Bella". I saw them caring. And sharing. And expressing concern for the girl's in the back of the bus who only seemed to care who had the best phone. Bella is still a little girl. She finds joy in hula hooping and still takes baths with her little sister. I see her growing up but it is ok with me if she takes her time. She will only be a child for a few short years and there is plenty of time for her to stress about things like phones and blogs and social pressure in the years ahead. If she wants to ask a friend to play, she can walk down the street and knock on their door the old fashioned way. She can have fun with a garden hose or in the creek. She can run in the sun and pick flowers without worrying about her tan or her hair. And she does not need to stop what she is doing to check her text messages. Life should be simple. Carefree. Fun. If that means she deals with not having the latest of everything, so be it.

Friday, June 8, 2012

Chaos Rules the Day

It was the kind of dream that feels real. I heard my alarm ringtone sounding off, Mr.Bean trying to sing me awake. But it was ringing in my dream too and apparently I was not ready to let go. I was in a theatre with a friend I have not seen in years. She was very important in my life and we were together watching a film. She invited me back to her hotel to sleep, which felt like home since at one time she saved my life as a teenager and let me live in her home. I kept reaching into my Casey Was Here bag and hitting snooze when it rang.
After stopping the alarm from interfering with my reunion five times, my eyes popped open. That really WAS Mr.Bean trying to wake me up! Shit! I looked at the clock and lept from the bed. My joints were screaming at me to slow down but it was 7:24 and the bus would arrive at 7:35. Eleven minutes. I hit the floor bellowing.
"Wake up, everybody get their boots on the ground! We slept in. Make it in ten minutes and I'll ...take you to DISNEY WORLD!"
Maybe it wasnt Disney World...maybe it was just a cupcake.
But I didnt feel like driving. Today is an important day. Thanks to Seth's help yesterday, I feel almost ready for this day. Today my father is coming and we are having a birthday party and fathers day celebration. This means the world to me because it is the very FIRST time I will celebrate my Dad's birthday. Or Fathers Day. I grew up without my birth father. The first time I met him, I was twelve and he was signing adoption papers. When I was old enough to do so, I sought him out and we have an unbelievably rich relationship. He is a constant support. This year I got my first birthday card (two actually, because he could not decide on which he liked best), my first Valentines Day card and my first care package with an actual chocolate Easter Bunny. I am planning on cooking for him for the very first time. Watching him blow out his candles. Watching him smile when he gets the shirt covered in my kids handprints. I'm so excited.
But THIS was not the way to start out such an auspicious day.
Flying into the kitchen, I reheated day old coffee for Seth. He can't go into finals without caffeine. I'm thinking about yesterday and how I woke up to Seth putting Sage in the tub, a FRESH cup of coffee and laundry tumbling in the dryer. Paybacks are a bitch. And I thought my karma was repaid when I took him lunch at school yesterday. Back to reality!
Isabella is ready in five minutes. God love that child and her sense of responsibility. The maturity I see in her every day now. She is combing her own hair and out the door in minutes. Even Sage is throwing on clothes. Now I know her secret...and no more twenty minute arguments just to put on a sock. She can do it when she feels like doing it. Seth and Ian are moving slowly. I'm screaming Ian's name when I realize he is standing right next to me. But I don't have time to pull my hair out. As Ian lectures me about an argument that took place yesterday, I look frantically for Seth's Boston Red Sox hat. He is not going to leave the house without it. At least he won't have to find his backpack. He left it at school yesterday. Not a good sign when he has finals today. But that is going to just be what it is and I can't fix it now. All I can do is pour caffeine down his throat and hope for the best.
Riley is quiet, but quick. He is already outside screaming that he can see the bus. Because I don't have time to find Sage's Justin Bieber messenger bag, I throw a fruit roll up in the laptop bag. And she is out the door. I don't have even a second to throw kisses and laugh at Riley for carrying his socks in his hand onto the bus.
It is obvious that Seth and Ian won't make it. Ian is still following me and ranting about yesterday's drama. I bribed them to clean the house while I shopped. Apparently, Seth told the other boys that they would still get their reward as long as HE got the work done. I'm not going to argue this with Ian but I need to make this a life lesson for him. Who knows what Seth's motives were (and the entire thing was probably a misunderstanding anyhow...but that is beside the point since Ian does not understand simple misunderstandings) and whatever they were, the fact was that I was very clear about what I wanted when I left the house. Seth doesnt get to change the rules. If I say clean...then clean you must. Anyone could try to take advantage of Ian. Perhaps Seth just wanted to screw them out of a snack. I doubt it, but in life people will try to find gain in your loss. Ian is going to have to learn to do what he knows is right despite what people around him say. I won't argue with him because he knew what he was told to do and chose to not do it. And I don't care what the circumstances were. Knowing Ian, he will be still talking about this when he is thirty. In the end, he helped me empty the dish washer and put groceries away and he got his reward. I hope he will let this go because now I have to throw on some shorts and drive them to school. That is when I realize that Riley left without taking his pill.
I don't even know what is up or down anymore. I fill a to-go cup with coffee for myself and race to the car. My dreads are looking like sideshow Bob and my make up is smeared. As the boys fight over whether or not Seth can wear a hat that Ian never wears, I leave to sit in the car. I can see Ian race out the front door to claim shot gun. I hope that Seth will choose to not make a big deal out of this.
My phone is going off and as I pull out, I see that Riley is begging for his own reward. Apparently he had clean clothes in his bag and was able to change his shirt on the bus. He wants me to bring take out to school. Seth is being quiet in the back, not argueing with Ian over the front seat and showing the kind of maturity that I see more often lately...but not often enough to make life simple. I hand him the phone so he can text Riley and tell him NO. I could explain my busy day a hundred times to Riley and he will only get louder and begin to text in all capital letters.
I am worried about finals. Ian tells me that he can't understand half the formulas he needs to pass today and he won't pass without a good grade on that exam. Seth says that he is having trouble in math too. Because I understand completely having failed my math regents three times, I pass him my coffee and let him finish it off.
The next ten minutes were spent rushing around the school, combing the cafeteria and finally having Riley paged.
Riley has his meds, Seth has his coffee, Ian is wearing a clean shirt and the other kids made my day and got on the bus with a minimum of threats of retribution.
And now I'm seeing bats.
It's time to brew a fresh pot of coffee and try to remember how to breathe.

Thursday, June 7, 2012

A sub best eaten alone.

Last night, there was a concert at the elementary school. My two best "mamas" and our families sat together and we watched our daughters, bedecked in their finery and so very proud of themselves, perform. This was Isabella and Gillian's last performance with the elementary chorus. Next year, they move on to a different chorus and as fifth graders will have their own lockers. And bras. Braces possibly. Boyfriends. It was bittersweet watching them and hearing their sweet voices. I am desensitized behind my video camera and am concerned with getting the picture. But my dear friends had tears in their eyes. They were the emotional wreck I become when I watch the video later. Over and over again. Our children are growing up.

This morning, I awoke to a pot of fresh, hot coffee. Seth is fifteen and this morning he had my eight year old up and in the tub with her clothes in a little pile, ready for the day. After her bath, he blow dried her hair and styled it for her. When Sage was born, Seth cut her cord. They have always had a bond. We are having difficulty getting Sage to pay attention and focus, to the point where sometimes it takes her twenty minutes just to put on a pair of socks. She needs constant reminders. This morning, when I ran short on patience, Seth said, "Here, let me try." Considering the last few weeks Seth and I have had, it was a jaw dropping moment.

Seth has devised his own personal schedule. He tries to go to bed at six pm and then wakes up at 2am to do homework and enjoy the very early morning peace and quiet before the rest of the kids get up. Sometimes this just does not work out and yesterday he fell asleep on the couch at four pm and was still sleeping when I went to bed at ten pm. I know that Seth deals with a large amount of daily stress. Having a large family means that I don't have the luxury of much one on one time with each child. I am often spread very thin and watching my eldest, knowing that I cannot go back and change a thing and that my time with him at home is drawing to a close, I feel regret. I love having a huge family. I love the chaos and the laughter, the noise...even the mess sometimes. I know I will miss having stuffed animals on the floor and spilled milk at the table. I have learned to appreciate the crayon marks on the wall and the hand prints on the windows of my car. I do wish I had more time for each child. I am blessed to be able to stay at home with them. I may be poor but I am rich with love. And even though it may be difficult on all of us when I am sick and in bed, I would not trade these years with my children for anything. Not even a high paying job. Seth and Ian are irish twins and with this comes a kind of intense sibling rivalry that I don't see with the other children. Because Ian is autistic, it just adds to the problems that Seth deals with on a daily basis. A disabled brother means that Seth stands out in school at a time when all he really wants to do is blend with his peers. He has a brother he can't possibly understand and this is frustrating to Seth. Like me, Seth is a fixer. He just wants life to go smoothly. In a family this size, with three special needs children, it just is not possible.

When I spoke to Seth's doctor about the problems we were having, he encouraged me to allow Seth the illusion of control and power. I was told that in a single mother household, the eldest (especially if they are male) take on a large amount of responsibility. Even when I'm not intentionally putting that responsibility on his shoulders, he still feels the weight. The obligation. Seth's doctor told me to try to give Seth a chance to use that responsibility and to give him privledges that reflect his status as the oldest son. This week, instead of fighting Seth at every turn, at feeling insulted and judged when Seth tries to point out a different way of doing things-I listened. I try to do things like make sure he has the biggest helping at dinner. I try to implement ideas when I can. Usually, when the children are arguing, I will take them aside in private and speak to them. Or let them work it out themselves. Siblings are good practice for life. But Seth felt like I was NEVER taking his side. He was not HEARING me take his side and it bothered him. He felt that because Ian was autistic, I was giving him special favors and I was being unfair. I usually say to the kids that there is just no way to BE fair in this situation. Even Stevens never works. I treat them differently because they ARE different. And I have very high expectations for Seth which is why I push him harder. Being the oldest also makes him a guinea pig. Anything positive I have learned about parenting, I learned by making a mistake with Seth. It can't be easy to be him. This week I made sure that he heard me taking his side. A new pair of Leo Gutti jeans and a Hollister shirt from ebay helped, also. I don't think there is anything wrong with a little bribe here and there. I even let Seth drive.

This morning, I was so amazed that there was coffee and laundry in the drier. I was so proud of Seth for taking Sage under his wing. I decided to buy Seth lunch at Subway and take it to him. Lunch for two and I headed into the school with a big smile on my face. Usually, I have lunch with Sage and just as she is leaving I am able to catch Isabella. When Isabella is finished, I run to the high school cafeteria and sit with Riley for a bit. Ian will duck into a doorway and hide if he sees me coming so I know that my time hanging out with Riley and his friends is probably limited. Seth has not wanted me to have lunch with him in years and I thought that the sub would be persuasive. His friend's were definitely jealous of the big lunch but Seth was worried that his friends would think it wasnt cool if I sat with them. And he did not want to be the guy sitting at a table alone with his mom. He suggested that we take a drive and eat while we drove. What a great idea, but one I will have to implement next year. We were running out of time. I looked at Seth and I knew it was important to him that I understand. And I did. As much as I had hoped for a little time with Seth at lunch, the object was to show my appreciation and make him happy. So I grinned and gave him his food and then I left him to do his "thing". I'm working very hard to understand that he is growing up. He wants to help and if I give him a chance, he will. He wants respect desperately and respect is a circle. When I show him that I respect him and that I am listening, he responds. I am blessed that he feels it is ok to tell me how he feels and knows that I will understand. I hope the doors of communication stay open for a good long time. I miss the little boy who would throw himself into my arms in the middle of the classroom but I'm very proud of the man my son is becoming. It takes daily work, on both our parts. We are very different people. He does not understand that I love the simple life, that I'm happy not working if it means I can be there for my kids or that love means something different to me than it does to him. But we are learning to respect our differences and work together.

I still have a few years of childhood left with my girls. I still have ample opportunity to show all five of them that they are loved. I hope that three years is enough time to teach Seth what he needs to know in order to thrive as an adult. It is never too late to start again and I don't want to have any more regrets. Perhaps this is a week of new beginnings for a boy who is growing into a man and a mom who is never too old to learn.

Wednesday, June 6, 2012

Out from under the covers

I have woken up every morning this week feeling like an eighty year old woman. This is totally unacceptable to me. It infuriates me. Not only is my house such an embarrassment that I would probably not open the door if I heard a knock, even if I was expecting Adele for dinner, but I can barely keep my eyes open to even catch up on episodes of House while I am resting. I do not have energy to run to the store. I don't feel like running to the bathroom!

What irritates me the most right now is that I have this overwhelming desire to just LIVE. I want to be out in the sunshine, walking creeks or stalking through the woods with my camera. I want to jump on the trampoline with my kids. I want to bust my budget on flowers and herbs and tomato plants and garden every single morning of the summer. The entire world is beckoning to me and my dogs are to run and play. I'M begging to run and play. And I have a thousand plans for the next week. Knowing I will somehow manage to carry them off but with a minimum of grace and nowhere near the effort I should put into them is making me feel postpartum. I had a shopping cart full of plants, including the most beautiful rhododendrum bush I have ever seen yesterday. It was overflowing with huge, succulent white blossoms. But the effort of just pushing the cart did me in and I left it packed with plants in the aisle. Picking out plants warms my heart and I knew I would never be able to plant them when pushing the cart was too much for me.

I have lived with this chronic illness for a dozen years now. I know how to push through pain. I know that if I go for a hike or dance to my favorite song that I will pay for it somehow the next day. And normally I don't care! Normally, I live my life despite the consequences to my body. But this week something is different and I can't seem to stand on my own two feet without wanting to melt into a puddle. I find myself angry at this illness that is claiming my time and the childhoods of my five kids.Anger has never made anyone better. But every time  I look out the window and see the sun shining...I want to cry.

I grew up with a very ill mother. I changed her bed pans and washed her when she needed it. I knew that I could never really count on her to be at concerts or games. It was understood that she probably would not make it to see my wedding much less my prom. And I learned to accept that. She has outlived all expectations and we are blessed to still have her. But I promised my family that I would not let my own chronic illness interfere with our lives. I would be the kind of mother that wrestled and played and attended every single little league game. I have to try harder than many just because I am a single mother. I never let that deter me before. But today, they are serving my favorite lunch in the school cafeteria and it's always a given that I will be there for the turkey gravy and mashed potatoes. School lunches are always fun for the kids and I. Sometimes I paint the nails of Sage's friends. Sometimes I bring extra money for ice cream. Once I brought a bag of crazy hats and did hair, but that is another story in and of itself. All of the kids love it when I come to join them. I'm the fun mother, the silly mother, the mother that listens and makes everybody smile. I do all of the things that I wished my mother had done for me. And I know that she tried too, in every way, to get past her illness and to be there for me. But she had a stroke and she was not living with "just" chronic pain. She was in a wheelchair. I am NOT in a wheelchair and I have refused to let pain get in my way. Before Sage was born and when Isabella was much smaller, I let myself succumb to the depression that often accompanies a chronic illness; especially an illness defined in many ways by severe fatigue. This is not the fatigue that you feel after being up for days or after a long day at work. Or even after a marathon. This is fatigue that makes your eyes roll up in your head. It claims your memory. It stifles your attention. It runs you down like a derailed train and you are nothing in its path. You are under an avalanche of exhaustion. It is a point of pride with me that I overcame the depression that had buried me for so long. I watched my children growing and I missed being part of that. Once I climbed from my bed, so long ago, I was determined to not crawl back in.

I started walking a few weeks ago with a good friend. She seems to understand that I can't keep up with her or climb hills. YET. Last week I was sorely tempted to just stay in bed, but I got up and I walked. And I was glad that I did. If she called me today, I don't think I would be able to do it. It seems to have progressed from the usual ache and fogginess into something of a whole other caliper.

I refuse to be taken down just because I was born without a pulse in my left arm or because twelve years ago a doctor said I had Fibromyalgia and that it would have to define my life from then on. I know that by replacing my thyroid hormones I can up the ante and give my body an edge that by nature it does not have. I know that pain is something that I can learn to live with. All I want to do right now is climb under my thick, soft duvet and dream myself into a place where I am running and climbing and doing cartwheels. But the truth is, that often in my dreams I still feel the pain. If my arms hurt, I dream that I have broken them. If my back hurts, my dream will make up a reason to explain the pain. I cant escape it, even in sleep.

There is a world of things I want to do. I am used to having to fight myself out of bed in the morning. I am used to smiling when the face on the pain scale chart says I should be crying out loud. I am used to saying that I am fine, even when my body does not feel fine. Because essentially, I AM fine. This illness does not define me. I do not talk about it to most people. The parents of my children's friends have no idea that I sleep with oxygen by my bed and take pills before breakfast, since I'm not allowed to eat until I have them. If I were to use a cane, which I have in the past, then people would define me by that cane. I refused to be defined by sickness. I feel that speaking about it only manifests it. And I am not going to stop living and loving and breathing.

Today, I find this is a huge challenge for me. This week has been one of the worst I have dealt with in a long time. I can sit and wonder what made that so. I can complain about the weather and the weird effect it is having on my joints. I can feel miserable and depressed and try to sleep my day away. It's what I WANT to do, God knows. I am motivated to do a hundred and one things today and my body won't let me keep up with my heart. The key today will be to make my to-do list a bit simpler. Carve it down into something I can manage. Instead of sinking into a depression because I cannot do it all, I will give gratitude that I am able to do SOME. I will give endless thanks that I am here and alive and able to experience the all of everything. This is who I am. I am an explorer, a seeker, an adventurer...a woman who can laugh through tears.

I will do it not just for me but because somewhere near me, is a person that can't stand. Can't walk. Can't see or can't hear. Somewhere near me is a mother who cannot have lunch with her child. Somewhere there is a child who needs an extra smile today and always looks forward to MINE. And I will go hear the birds sing and eat in a cafeteria full of screaming, happy children  for THEM.

Tuesday, May 22, 2012


I want to see the signposts on the path. I want to turn a corner and see a destination marker. Just a marker that warns me of what is ahead of me. Falling rock zone. High Altitude. Bridge freezes before road. Perhaps if I had warning, I wouldnt be so shocked when I find myself outside my comfort zone. I have already learned to not get cocky.  When I begin to think I have peaked, I realize theres another mile of mountain or another path around the corner to travel. Signposts are everywhere, because no matter what path I choose, I will eventually end up home. And home is completion. Home is more than the knowing...home is the experience of knowing.
I try to stay in control of the wheel and not freeze up when I see an obstacle in my path. I am no deer in the headlights. I dare the headlights.
Every road leads to home and I cannot help but reach my destination. I just wish I could find the shortest route possible. Why do I always seem to take the detour? We are all climbing the same mountain. But I seem to find myself on the flat face where I'm daunted by the climb. I'm blessed to have the equipment to climb the mountain. And the faith to believe in the view from the top. I look at some of my fellow climbers and wonder how they climb without a rope. I'm relieved to always have a belay. I'm safe, no matter how slippery my path gets. I worry about those at the bottom of the hill. I worry about those who seem crippled and refuse to ask for a hand up. Trusting the hand up is the only way I've found comfort during the journey.
I am praying for revelation. I am listening with both ears and my entire heart. I am starring at the stars and pleased with my creation.
I am learning to not swerve on the ice, but to hold the wheel tight and drive INTO the swerve when it happens. And with every misstep I learn. With every breath, I acclimate to the altitude. And I think I'm going to make it. I can't help BUT make it. Wishing for a window into the future won't make this journey easier. I can conquer whatever throws itself at me. With Gratitude.

Mother Meets the Dalai Lama

My mother went to see the Dalai Lama recently. I was surprised, but she said that since her move to Florida she is taking advantage to do and see every "new" thing. She paid an extra fee to have a personal visit with His Holiness. He was sitting lotus position in a big easy chair. She said her entire being was washed over in this indescribable feeling of love. She told him that she had trouble with the whole thing, because she was a Christian. At the end he told her that she should not be troubled because there was one God loving us all. She asked him to look at a picture of my family. A portrait I had taken of me, Laura and our children. When he saw it he said "a kind family, a loving family." and then, he pointed to ME! And he said "I know her. I know her." and my mother said, "youve met her before?" and he said "I know her. She has a troubled heart. And you have trouble between you. It comes from childhood. Tell her it will heal." He said something about me viewing it from wrong perception. And he said that I would understand when my mother didnt. And I do. Because I understand the Buddhist perception. Its what I've been working on in therapy for 2 years now. How to stay on my path, even when faced with the worst. How to show love and compassion when extremely stressed and faced with things that are driving me to anger, to depression, fear, etc. I know why I am here. I know my path. I am blessed to know these things. But I go off path easily when I am misunderstood or when those around me refuse to hear truth or accept responsibility or do things without thought. Carelessness. Those things take me off path and lately I've had a hard time getting back on. I had questioned my therapist recently on how to show compassion to my mother without allowing her to hurt me. If I completely take her out of my life that means I cannot show her gods love and compassion. If I let her in...the results could be unpredictable. I need to meditate on what His Holiness said. How remarkable that she went. She said that she felt great peace after meeting with him. I know that feeling. I felt it always after sessions with my Swami. The pull to move to a place where my children can go to a temple or zen center has really been big for me lately. I find it hard to meditate and be at peace when I feel trapped here. Do I know the Dalai Lama? Of course I do. We are all one. There is no difference between any of us. We are all on different places on the same path. And we all have different "jobs" or experiences on that path. I am trying to learn the yoga of love. That is my yoga. Always show love, no matter what is shown to me. And sometimes, when someone is ignorant, thoughtless or cruel...I can give it back to them with such blunt honesty that its more cruel than anything else I could give. I may have a gift to see into people. But when they hurt me, I have used that gift to hurt them back. And lately I have not liked myself much for that. I may be so tired of being hurt that I have broken down and gotten off my path. But I think I just got a sign that its time to get my ass back on the trail.

The Girl With The Chucks

Today I started walking with a good friend. She may be the absolute BEST person to walk with...I think she is just refreshing. She's a Seattle girl. I picture her as a teenager trodding thru the puddles in her converse at a time when the world was just beginning to hear Nirvana and Pearl Jam for the first time. She reminds me, with her vintage dresses and her tights, that it's ok to be myself. She reminds me that I'm not alone in this crazy world of raising teenagers and that sometimes it's ok to just give up for a little while and let my kids make their own mistakes. Where would we be if we had not learned from life experience? We can't force our kids into a mold. We have to let them grow. And we have to remember that we are still growing along with our children. Since when did we get to the place where we had all the answers? I may be wearing polo sneakers on my walk today but only because my chucks need an upgrade. I wore them out walking in creeks. And whether I'm wearing Ralph Lauren or Chucks, don't judge a book by it's cover. I'm a complicated person. I have enough layers to be an onion. I want to be everything...and anything...on any day. I want to experience it all. Often I experience life vicariously through my children. I love that my daughter puts holes in the knees of her jeans faster than I can put a run in a pair of nylons. She is LIVING. She is magnificent in her explorations and her adventures. Seeing the world thru her eyes...opens my eyes.
I chuckle when I hear new mothers "planning" their children's lives. They won't ever let them eat fruit loops. They are going to be the star of the little league. They even plan how many children of each sex they will have. And I have to shake my head because that little baseball star might turn out to be a computer geek who hates sports and wears plaid...and in a hurry, a little bag of Fruit Loops can make a long ride shorter. We have to let our children be children...and grow up to be who they are going to be.
Perhaps walking before a job was not the best idea in the world. I am a little stiff. But if I had not gone out to walk, I would be a lot less motivated to go work today. I would be laying in my bed counting the minutes and moaning to myself. Walking in the morning works a lot like an early morning shower. It wakes you up. The world is still opening it's eyes. The petals are unfurling, the dew is fresh on the grass and the birds are singing. The day is calling. And if you begin your day with a friend and a smile it sets the pace for the rest of the day.
This week, I ended one evening warm with my favorite wine and in the arms of someone I really am beginning to care about. And I began a day walking to the park with a friend. It gives me an appreciation for life. We can get far too caught up in our daily schedules, especially during softball season when every day is another day at the concession stand wishing for something other than a hot dog. We start to forget that there is a life, a world...a universe...waiting for us to take notice. I have to remind myself as often as possible that all of this is an illusion and my body is just a vehicle for my spirit. So while riding around picturing myself in my own version of "Meet Dave", I hope I can experience love, hope, laughter...and the early morning bird often as possible.

The Adventures of Mr.Tom

Stepping outside to test the temperature, I give an inward groan. Mr.Tom needs to have a sunbath but it just isnt warm enough yet today. It is supposed to be seventy five degrees this afternoon but it was only thirty last night and there was a frost. So our red eared slider is languishing on a heating pad. I noticed that his shell had a few nicks in it and decided to do some major research. A heating pad was recommended. A host of things was recommended, which was pretty shocking for what I thought would be a low maintenance pet.
Seth begged for a turtle for years. Small aquatic turtles were outlawed. We were able to buy a turtle, finally, this month and only because it had a shell bigger than four inches across. I should have put the research in before the turtle came home but I was so excited to finally fulfill Seth's dream that I just grabbed every turtle accessory I could find and waited to soak in the smile on Seth's face. The guy at the pet store did not give me any stern warnings. He did not recommend a particular tank, certainly not a tank that allowed for ten gallons per inch of shell. We have a ten gallon tank. Since I was looking for a new lid for my ten gallon tank, I was pretty sure he was aware. The special floating turtle dock I purchased does not even fit in the tank. But Seth was smiling...
So now I worry about Mr.Tom. Often. I really did not need anything else to worry about. Seth was not feeling jilted- that should have ERASED the worries I had but now I am just stressed. A life is a responsibility and it doesnt matter to me that it is a small turtles life I am fearing for, it is alive and it's life is in MY hands.
I looked up "Red Earred Sliders" on google for some basic instructions after seeing the nick in his shell. The site was full of warnings, cautioning that taking on a turtle is no small challenge. They require a certain temperature that needs to be monitored. That surprised me since they live in ponds year round. They require calcium on a regular basic as well and the site warned me to not feel Mr.Tom meal worms. I glanced in disgust at the bottle of newly purchased meal worms that sported a red earred slider on its label. It's a good thing I bought him several types of food. He seems to prefer the meal worms. Don't we always want what we shouldnt have? Perhaps a meal worm is a turtle's chocolate. They recommend good veterinary care. Especially if they receive a nick on the shell...
On my budget, a vet is out of the question. I take the first aid advice that they provide and run with it. He needs time in the sun and time on a heating pad. He gets a thirty minute bath twice a day. And, I have to be careful that he doesnt drown. Drown? He is an aquatic turtle. But ok, I'm very paranoid now that he might not come up for air. What if his rocks arent perfectly sloped and he cant climb onto his dock? What if his rocks have bacteria on them that make him sick. If he looks sick I have to put drops in his eyes. But what if he hides in his shell when it's time for the drops? This is just too complicated.
And then I see a special section all about returning turtles to the wild. A lightbulb goes off in my head. I'm certainly not the first person to buy a turtle in impulse. Are there turtles languishing in pet stores all over the county, cheaply priced and headed to certain death? Probably. I know for certain that Mr.Tom hates it when Sage runs off the bus and grabs him impossibly fast iin order to show her friends on the bus how lucky she is. And the dogs barking next to his head...he may just die of fright. He really doesnt appear to be that happy...for a turtle. I decide that Mr.Tom is going to a beautiful pond near us where he can be appreciated. And where I'm not the guilty party should he perish. It took awhile to sell Seth on the idea. But I think he understands that this is a bigger responsibility than he really wanted to undertake. I tell him that we can paint his shell with a bit of enamel and find him whenever we want. Something tells me it won't be that simple but Seth jumps at the idea.
It is just too cold for Mr.Tom to lay in the sun right now. But I can relax, just a bit, knowing that tonight he is heading back to the wild.