This is one of the most magnificent pieces my sister has written. It is a must read.
This is one of the most magnificent pieces my sister has written. It is a must read.
Blaise woke up promptly at 7am, “I am hungry mom, I need an apple.” Today is our day to sleep in, I was hoping for just 20 more minutes, well nope, not today. I got up and BAM. Holy, you know what, migraine city. I don’t typically get headaches, let alone migraines, up until recently. I think to myself, “I am fine. I have medicine for this, I will rest before work, this shall pass.” Six hours later, 2 pills later, a nap later, and I still think my brains are ready to come out of every possible crevice in my head. Oh did I mention today I decided to start my juice cleanse/fast/feast.
Probably not smart because I am going out-of-town on Friday and well, let’s just say it’s about that time of the month. I went forth with reckless abandon, thinking I made it four days last time, I can definitely do four days this time. Ha! At just around 1:30 I was ready to eat my left arm for lunch. I started thinking. Listen to your body, what is it telling you, it’s telling you to eat. I had some nuts. Headache still here.
7am in my house:
Rachel: “Blaise you need to get on the scale it’s been a while.”
Blaise: “Okay Mommy”
Rachel: “Oh my god you gained 4 lbs. What the heck. I did everything the doctor said. How could this be?
My husband senses a major meltdown and hides under the covers. My heart starts beating. Oh my god. I hate PWS. I hate scales. I hate food. I hadn’t planned on getting on myself, having gorged on some serious Italian last night, and the night before, but of course I did anyway. I stepped on. OH MY GOD I am up another 10 lbs. Panic sets in, sweat beads are forming on my forehead, my voice deepens, every living thing in my path should run for cover. I deal with panic, I ask for help from good friends and move on with my day. Experience and release, I hope.
WHAT YOU SEEK IN LIFE WILL FIND YOU
I am sleeping in my bed when my phone goes off. It is 1:45 headache is still raging, it’s Blaise’s teacher. Shit, do I answer? Is it important? Oh god, I want to sleep. I answer. Conversation goes as follows. “Blaise had an accident, a big one, he wet his pants big time. Oh and there are no clothes here that fit him, they are all too small, oh and by the way he needs bigger pants his butt keeps showing.” Well, after that mouth full I am fully awake. I rub my eyes, put my shoes on and head out the door. I start the car, oh I need to bring clothes, my child is naked in his class. I get to school and he is wrapped in a blanket, naked from the waist down. Conversation from phone continues: “Blaise needs BIGGER pants, his butt crack shows, he is too big for his clothes.” Yes, I get it.
Universe said to me: You wanted to deal with this today. You asked for it. You put it out there. I didn’t say how I would give it to you, but I did. So the universe presented me with this horrible and ugly situation with my son. For the non PWS parent let me explain why such situation is ugly and horrible. Our kids gaining weight is the ultimate enemy, (the bigger PWS kids that is). After leaving the doctor in January and her saying no more weight gain, another four pounds feels like I have an elephant sitting on my chest.
I pulled up my boot straps and drove his little hiney down to the store and got new pants. Situation handled, NOT.
Said voice in my head(in one long breath): You are failing as a PWS mom, this is too much to bare. I have to monitor everything he eats, make sure he gets exercise and therapy, I have to practice reading, writing, and math at home, dole out countless medications everyday, make sure his GI tract is functioning, make sure he is breathing at night, keep him safe from food, help him dress, brush his teeth, use the bathroom properly, give his GH shot every night, drive to Atlanta and Florida for countless doctor appointments, and there is too much more to list. OH AND SHIT HE GAINED 4 LBS, like I need one more thing.
This is the voice inside my head. Sometimes I wonder how I get the courage to wake up in the morning and face another day of battles and victories, or joy and hurt. All I know to do is keep moving forward, connecting with my support system, and write.
My mom was here for 2 months when I got sick, she is an angel from heaven. Just knowing I had somebody to turn to at any point in the day was heavenly. I still have that, via phone, but I have it. PWS can make you feel so alone. I don’t feel alone today, but in the spirit of ABTTT(always be telling the truth) I am admitting that today I am overwhelmed and exhausted. If it was weight issues I wanted this morning I sure got them.
Sometimes I can do all the right things and the outcome still doesn’t fit my plan. This is that such case. I did everything the doctors told me and it still backfired. Time for plan B. I will always turn to plan b, and then c. I will do whatever it takes to get it right for Blaise. I want him to live a happy life, I want him to be healthy and fit, and move with ease. I will tackle this latest monster. I am tired and don’t know if I have the energy for monster slaying, but there is a job to do and so I go forth, with reckless abandon, because I love my son.
My teacher in the 4th grade was Mrs. Wheeler. A small petite woman with white hair and a raspy voice. She wore skirts that came to her knees and I always remember her fondness for plaid. One afternoon she came up and whispered in my ear that she wanted to talk with me privately. She had assembled a list of students whom she had created a special program for, it was a creative writing program. I was so honored. I couldn’t believe it. Every day at lunch while all the other children ate their Bologne sandwiches, we went to the library and wrote stories. I still loved reading and writing then, it still brought me joy.
When I entered middle school my love of learning started to fade. I replaced it with boys, cigarettes and pot. Once I found a new love my books and poems just got old and collected dust. My grades began to fall, and school was just a meeting place, it wasn’t a place of adventure anymore. I felt tinges of sadness when my poor english class grades came in, I felt ashamed because I loved to read and write, but it was quickly replaced with my latest crush, or the next party.
I dropped out of high school in the middle of my junior year. This is a very touchy subject in my family. I don’t have any regrets but there is always a wonder. I was to enroll in community college and get my GED, nothing ever works out as planned. Instead I went to work got a job managing a big health food store, I got life lessons. I always convinced myself they were more valuable than any book could give me. Truth be told, I wanted those books, I wanted the words swirling around in my head, I wanted to have a vernacular that would make people’s heads spin.
So my story got stuck there in the middle of my junior year. My “I AM NOT SMART ENOUGH. I AM NOT SMART ENOUGH TO BE A WRITER.” I got stuck there. I was like Robin Wright Penn in “The Princess Bride,” I was in the quicksand, but I didn’t have a prince to pull me out. So there my story stayed, for years it pulled me down.
I finally got my GED went to college, of course left a year shy of getting my BA. New story takes in. I CAN NEVER FINISH ANYTHING, AND I AM NOT SMART ENOUGH. They are perfect for each other, they go well together. Like a good wine pairing.
Over the years I dabbled in finding my love of books again, finding my love of words and writing. Nothing ever truly stuck with me. 35 years old now and I have that flutter in my soul again. I am giddy with excitement again over a good book. I am stealing away moments to fill myself with words on pages that I run my fingers through, scenes where I pretend I am there, lines I wish I had written. My sister reminded me lately, “If you want to write you have to read, and read all the time.” I listened intently to those words, I took them to heart, I sewed them inside my chest where I think my heart would be. So I read, and I read. I read essay’s, books, magazines, just anything I can.
I am time traveling. I am traveling back to the early 80’s in California. I am just 5 or 6 years old. I am a great reader, I am one of the best in my 1st grade class. I love reading and I see a bright future for myself. I think privately, “I am smart. I AM SMART.”
After reading my sister’s latest essay about the turns we take in life, the left turns and right turns, I thought about my life. Who would I be if I had taken a different turn? Would I have been a scholar? A history teacher (my major in college), An author? The owner of a multi million dollar company? Maybe, Maybe not. Maybe all the turns I took are exactly the right turns. Maybe instead of right turns I took left turns, that sounds like me, I never listen to what people tell me anyway. Maybe those left turns are the ones that will make my new-found love of writing more interesting. I most definitely lived some wild and crazy moments, maybe those are the left turns I needed to have. It never really is possible to know what, if any, of the choices we make are right or wrong, they just are.
I see the bookcase in my room in 1985 California. It is pine, completely filled to the rim with every category of book, mostly books on marine biology, another early love of mine. I sit and remember what those books smelled like and how they made my insides swirl with excitement. Here I stand now that same girl, filled with the same desire and joy to fill my soul with words and knowledge.
Here I am ready to change the story, to make a right turn.
“I AM SMART. I DO FINISH THINGS. I AM A LOVER OF ALL THINGS BEAUTIFUL.”
The boat ride leaving the yoga retreat in Mexico lasted a lifetime. I watched as the palapa’s in the mountain became smaller and more difficult to make out. The tops of the mountains began to disappear into the clouds. I felt the wind whipping across my face and into my eyes as they grew heavy with sadness. It was a life changing experience for me. It felt like my own tiny piece of heaven, I wasn’t ready to come back down to earth yet. I left with two temporary tattoos on my arm, one of them read: COURAGE.
My sticky note from Mexico reads:
I came back home and that tattoo stayed on my inner arm for almost a week. When the letters started to fade, when they started to peel off my skin, I felt a sense of loss. What was the next thing I needed to do? What could I do to get them back? The only obvious choice for me was to get the real thing done. I called up my tattoo artist and said I am coming back in, I just been in a few months earlier for a large piece on my shoulder. I had a beautiful cherry blossom and the jewish symbol CHAI placed on my right shoulder. Symbolizing for me new beginnings and embracing all the best that my life has to offer. I wanted the word COURAGE tattooed on my right wrist. I wanted it facing me. I want to see those words blaring at me when ever I use my hand. I want a constant reminder of what is possible for me. Oh and by the way put a heart and a dove with it. Let’ s add some love and hope with that courage.
A year has passed since that tattoo needle pierced my skin and forever imprinted my courage. I found my courage in a myriad of places in the past 365 days. I found most times when I never even thought it was there. A year has passed, another long year. Another year full of opportunity to rise up with my courage.
Time makes things dwindle. Too much time can suck the inspiration out of you. With each day passing your courage can get eaten by its evil twins fear and doubt. At times I am playing hide and seek with my courage. It’s mine, I am frustrated that I can’t find it. Where did you go? Why do you allude me, why when I need you most?
Here is a quote from Brene Brown. When I read her words it hit me like the slap in my face from my mother when I was 15. I had pushed her to the limit, there was anywhere left for her to go. It was eye-opening and life altering. I had to make a shift. I had to weave my courage into every thing that I was.
The root of the word courage is cor—the Latin word for heart. In one of its earliest forms, the word courage literally had a very different definition than it does today. Courage originally meant “To speak one’s mind by telling all one’s heart.” Over time, this definition has actually changed, and today, courage is synonymous with being heroic or performing brave deeds
I have fallen of course just slightly. I had temporarily lost my courage. It takes practice for me to keep it so close to my heart. I struggle with consistency like that. My courage is calling me. I believe in the motto ‘Fake it till you make it’ but, I don’t want to fake it anymore. I desire the freedom that comes with speaking ones mind and telling ones heart. I long for that full and total expression of joy that comes with owning up to who you are and what you stand for.
I am peeking over the edge now. Lately I have noticed hints of that courage popping up in my life. I want to turn those hints into full-blown courage attacks.
Attacks of massive courage that take complete control over my soul.
Are you ready for your courage attack?
It was a beautiful day today in Georgia. The weather was brisk, but sunny outside. My little guy had asked me to ride bikes with him around our property. I had received a beautiful mountain bike from my husband for Christmas. It has just sat in the garage since the day I received it. I had absolutely no energy to ride it, just looking at it made me tired. After almost 8 weeks of feeling as if I am living an out-of-body experience I decided to dust it off and give it a try. I will admit, I was a bit scared. I haven’t rode a bike in a million and a half years. I got going and it was fun. My son looked so ecstatic to see me outside and playing with him, I felt that feeling of warm satisfaction come over me. The warmth reminded me of something that my sister said in her workshop this past weekend. What are the 5 most beautiful things around you.
5 most beautiful things in that moment: 1: the sun is shining, 2: my son was laughing, 3: I had the wind in my hair as I sailed through the yard on my bike, 4: I was well enough to enjoy time playing with my little guy, 5: The sky was unbelievably blue without a cloud for a hundred miles.
I rode the bike for a few minutes, I ran down a hill that was bigger than I thought. I giggled as I slid my feet on the ground to balance and protect myself from crashing into a tree. I was rather amused at how silly I must look. I had one of those moments where you are laughing and your heart is racing, your body doesn’t know if you should be scared or yell yippee at the tops of your lungs.The energy was short-lived, the overwhelming fatigue I have settled in.I decided to go back inside and sit down.
I took the last 9 days as a break from the endless doctor appointments I have been through. I felt so defeated as I sat in the doctor’s office last Tuesday, my birthday, as the doctor said my MRI was normal. It wasn’t the MRI my regular doctor even wanted. So I walked away having given a small fortune to one doctor only to discover that I would need to seek a new Neurologist and start all over again.
The last week has given me a plenitude of time to think about my life, my body, and what it is that has taken over my physical self. I really want an answer. I really want to know what it is that isn’t working inside my skeleton. I really want to know why I don’t feel the way I think I ‘should’. That being said I also really want to not have anything wrong with me, especially things that could potentially rob me of the life I desire to have.
A few months back I was on Facebook and I came across the profile of a mom that I know from a moms group. She came up in my news feed. She was posting pictures of herself, she was bald in all of them. The next week she posted references to her surgery. I knew of course she had breast cancer. She is so young, she is my age, she just had a baby for crying out loud. It hits home for you when you see people who represent you, people in the same stage of life that you are, getting sick. I can’t handle the thought of all of this.
I am in limbo with my health. I have days of normalcy and days where I feel like a person who is very ill, not a pleasant feeling. I have no diagnosis. I have no explanation. I have no proof of illness. I have nothing except for the ever-growing lists of symptoms that have overtaken my body. When you don’t know what is ‘wrong’ with you it is scary, definitely scary. I don’t think the glitch in my body is fatal, but you get scared in your private moments
I am scared! What this mystery ‘thing’ is inside of me
When my son Blaise was 2 years old we saw every doctor under the sun. As he got heavier and heavier I knew something more was wrong with him, it was more than just low muscle tone. We saw cardiologists, pulmonologist, G.I. and so on. Finally at the rheumatologist office, a well respected man with horrible bed side manner, did we start to get closer to finding the root of it all. As this tall man with his white hair and hardened face looked at me, I felt small and uncomfortable, I wanted to shrink and disappear. He said to me, there was nothing wrong with my son, I fed him too much simply put he was JUST fat. I knew this wasn’t the case and I said no,no, no. After going back and forth we finally agreed my son hadn’t received the right genetic test for PWS. I told him order it, I forced him to order it and so he did. Twenty one days later I got the news that Blaise indeed had PWS. Had I just taken that doctor for his word that Blaise was just fat he would still be undiagnosed today. This is where I stand. I KNOW THAT SOMETHING IS NOT WORKING INSIDE MY BODY. I know I have to be an advocate for myself. I will find the right doctor, I will take all the tests I need, and I will make sure that I am not slipping through the cracks.
I am traveling to Kripalu to assist my sister next week for another retreat. I worry that I will have an attack while I am away. I worry that I won’t have the energy I need to be a support for her. I worry that I won’t experience this wonderful place the way I would have before I got sick. All that being said I am still going. I am taking a leap of faith. I have faith that I will not be sick while I am there, I will find the energy I need, and I will meditate and find some peace while on this trip.
At this stage all I can do is have faith. I have always been a firm believer that the Universe has big plans for me. I know that this is all just a roadblock for me. I promise to keep everybody informed of any new news on my health. Thanks to you all for sticking by me through all of this.
I sit here and stare at my Vision Board which was made over a year ago. I stare at it because I have given up writing my book for the night and I decide to write a blog and one of the ways I think is by staring. When I stare I soar into the depths of my imagination. When I stare, I am not on Facebook or distracting myself in any other way. I am simply there or here, more aptly. Just staring into my mind and its abyss of possibilities.
Read more here via Update Your Vision. « The Manifest-Station.
Have you lost your wonder?
I sit and watch my 3-year-old watch his favorite television show. It is a show all about nature on the Animal Planet network. He is in such wonder at all the information he sees. He listens with such intent at every morsel of science and nature coming his way. Tomorrow as we go about our day he will recall all the material he learned a day earlier. He is a little sponge.
I watch my son and think to myself, “Have I lost my wonder?” If so, when did I lose it? I would like to think that I am still in wonder of the many amazing things that surround me, there is always room to have more.
Be Awe. Be Wonder – Jennifer Pastiloff
This past weekend I spent 48 hours in Ojai Valley, California. I was there assisting my sister on her Manifestation Yoga retreat. It was amazing! I was definitely in wonder of my surroundings, the people, and the energy.
(the view of the pool and valley at Casa Barranca in Ojai Valley, California)
Then real life happens.
Upon returning home yesterday I found that I had lost my steam. I felt deflated. I was missing my wonder. As I put my head down for sleep last night I asked myself a question. “How can I be in wonder in real life? How can I be in wonder when I am doing laundry or washing the dishes? Wonder is one of the beautiful things that look different for all of us. It is not quantifiable or measurable, it just is.
I feel wonder when I stop focusing on myself.
I spent the morning today surrounded by 3 year olds at my youngest son’s preschool. We sang, danced, painted, and played. It is hard not to feel wonder in the presence of smiling and laughing children. I truly had so much fun. They are so full of pride and joy. They experience wonder at least a dozen times an hour.
I am in wonder of the body that moves me.
I am in wonder of my children.
I am in wonder of the amazing weather today.
I am in wonder of the delicious food on my table.
I am in wonder of the curiosity of my dogs.
I am in wonder of the love of new friends.
What is your wonder today?