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Tag Archives: health
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Little Lion Man

25 Feb

I never knew how to be a guarded person. I always felt completely at ease sharing with others. That is part of the “story” of who I am. Sharing personal issues, triumphs, victories, and defeats all comes with the territory.

I am the proud mother of 2 young boys. I love them both dearly. They are little tiny heartbeats of mine walking around this earth. They are each a  little tiny phenom. I am in love. I have loved them both since their first breath, and our first touch.

Saturday evening I decided to keep my word and leave the house. An old friend, a woman I have not seen in 20 years, had come to Atlanta for a visit. I was so tired, not a shock, so I really debated going or not. I heard a little voice in my head tell me, “Your word is all you have. Have integrity and go.” I went and took Blaise with me. We went on a date as he shouted so eloquently across the Barnes and Noble parking lot. Prior to the bookstore Blaise and I enjoyed a wonderful dinner with our dear friend and her husband. Two hours we sat there, he was a perfect gentleman. He looks so “NORMAL” it really is the bain of my existence. It is confusing to the world when your child looks “normal” on the outside, but is fighting a full-fledged war inside. After almost 4 years of dealing with Prader Willi Syndrome and Autism I think I got this. I am doing well. I go out in public, I travel with my kids, I go on living my life. That is not where it ends. Remember I have 2 children. My second child, “my typical” child is anything but “typical.” I have written of this before, and it is worth re visiting.

I recently saw an article posted on Facebook regarding medicating small children. The article was long and some of their argument alluded to the fact that; these children have nothing wrong with them, the drug companies just want to make money. Now, I am no fool. I know we live in a capitalistic society, but I also know there is a real possibility that my Little Lion Man has mental health issues. It’s not his fault, but it’s there. It lives there.

There is nothing wrong with him. You are a first time mom. Your first child is disabled, you weren’t able to parent him. You don’t have a clue with your second. This is normal behavior.”

I ducked when that sentence came flying out at me. I was in front of the big spinning wheel as the magician is throwing knives at me.

YOU ARE A FIRST TIME MOTHER. YOUR FIRST CHILD DOESN’T COUNT.

The knife went in deeper. I could feel the warm blood starting to pour out of my chest. It stung. I put a bandage on it, covered it up gtfvwith two layers of clothes and moved on. The cut was just superficial, painful, but not deep enough to kill me.

Here is the truth, my second heartbeat, my Little Lion Man, has mental health issues. They are real. A mother knows. A mother can feel when her heartbeat is hurting. A mother can feel when her heartbeat fades in and out.

My little man turns to me and says, “You hate me. You think I am stupid. I know you think I am stupid.” Those words have never crossed my lips, never. Where does it come from? Where does this glitch start? Where can I go in with my tools and repair the loose wires.

As I drive my normal route home I pass a sign on a PreSchool billboard. It reads:

“How we talk to our children becomes their inner voice”

I always tell him I love him. You are smart little man. You are loved little man. You are the best thing in my life little man.

Those should be his inner voice, but they aren’t. My son is diagnosed as having a mood disorder and ADHD. Yes, he is 3 years old, the doctors didn’t even think twice. They knew he could hurt himself or us.

Sadly I had to take him off the medication, again. Insurance won’t cover mental health. Nobody wants to talk about mental health in small children. It is taboo, We need to talk about this, it is a real issue. I am not here to debate the issue of medicating young children. I am here to say lets call it what it is. Let’s talk about it. Let’s offer help to the families who feel helpless. Mental health effects people of all ages, even Little Lion Men.

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In life things may seem perfect and tidy on the outside. They may pass all the tests, they may make all the marks. My hope is that we have the courage to take our looking glass and look a wee bit closer. Take a loving look inside. There are little lion men all over who don’t show that their little heartbeat is hurting. My little lion man is brave and courageous.

How many little lion men do you think you pass everyday? Do you see them in the store, the movies, at school? Where are they in your life?

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You is kind. You is smart. You is Important.

12 Feb

When I finally got around to watching the movie “The Help” I sat speechless during one very significant scene. It is the scene with Viola Davis speaking to the little baby Mae Mobley and she say’s to her,

“Remember what I told you. You is kind. You is smart. You is important.”

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Tears came rolling down my face. I immediately thought of Blaise. It came crashing over my bones with such force it knocked my head back. This is how it is. Others will try their best to knock him down. I will not let them. I will be right there by his side to remind him.

YOU IS KIND. YOU IS SMART. YOU IS IMPORTANT.

My heart is full tonight. I dedicated my class tonight to opening up the heart space. Opening up and loving, loving even those who choose not to love us for who we are. Truth be told I couldn’t fill my heart space with that. I am filled, frustration, and sadness.

I knew when my children were born that I was here for them, and not the other way around. I knew that it is my job to protect them, stand up for them, love them, and help show them the way.

I need to fill my lungs up like hot air balloons and climb to the top of the mountain. I am ready-I am about to let it rip. The whole world will feel the vibration from what I say. So here me now.

God doesn’t make mistakes. My child is not a mistake. My child is perfect in every way imaginable. 

If you have ever had the pleasure to meet such a sweet soul you would understand. The glow that emanates off of his body while he sleeps. The high-pitched shrill that creeps through the house when he wakes in the morning, full of love for you and the day. The pure acceptance that he has for you when he embraces you, with his body that struggles to hold on to yours. If you are lucky enough to have somebody like this in your life than you are feeling those warm and fuzzies in your heart. You too understand the perfection I speak of.

My sweet angel will face much adversity in his life. I will be by his side the entire time to champion him. I will honor him always. I am working on opening up my heart space, I am trying to love those who don’t accept my son for who he is. I sit and attempt to fill my heart space with love for those who think of my child as a burden, as a problem, as something less than an made-up  standard of perfection.

I can still recall those first days of my baby boys life. I sat at home smelling his baby hat for hours, all the while he was in the NICU trying to get stronger and come home. My memories are of  so many sweet days smelling his delicious baby smell, laughing with him, watching his first teeth come shooting out of his little mouth, and sweet middle of the day naps shared in our secret space. I can remember all that. What I don’t remember is ever once feeling that he was anything less than he was meant to be. I never had anything but love in my heart for my first-born and magnificent child.

There are no guarantees in life. There is no manual, no rule book. My child was born missing a chromosome. My friend Emily’s child is dying of Tay Sachs’, a horrible unfair and cruel disease. We both know the beast we are up against. There are millions of children in the world, millions of different and unbelievably powerful little brains getting ready to run our world.  Millions of different circumstances. God doesn’t make guarantees. I know with all of me, I know this down to the tiniest part of my DNA. God doesn’t make mistakes!

If you haven’t met my child yet, or haven’t met a child yet who can fill your soul with light-I encourage you to do so. If you have a friend with such a child, or maybe family, practice acceptance. It is the greatest gift you could ever give.

 

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The Body Mystery

24 Jan

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

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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.

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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.

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The One on Neurologists, Drugs & Turning 35.

6 Jan

I have spent many hours contemplating whether or not I should write this piece. I have gone back and  forth in my head about the repercussions of writing such a thing. I almost put pen to paper, or fingers to keys this summer, but alas I stopped myself. I think I finally came to terms with what it is that was holding me back. It is always the same thing.

What will THEY think of me?

I will be 35 years old in 9 days. I believe after 35 years on this earth I need not care what people think. I need only care about what it is that brings me joy, what it is that inspires me, and what it is that is part of my purpose here on earth.

Do you believe in the mind body connection? I absolutely do, I absolutely do.

5 weeks ago I became ill, and haven’t gotten better. It seems that all of my myseterious symptoms from the last 6 years have come home to roost all together now. After many doctor appointments I ended up at the neurologist running through every test possible. As I sat and listened to the doctor say to me that he is going to tell it to me straight, “I am looking for some very serious things here, cancer, brain tumors, MS and so on.” He then left the room. It was as if my insides began to convulse and found their way to the outside of my body.

Cancer and Brain Tumors, oh no this is not in my plans. I will not be fitting those things into my week, ok.

I wept in my mothers arms, the tears came out of me while my body shook. I wanted to make it stop. I wanted the noise in my head to go away. I just kept hearing cancer, cancer, cancer, cancer. Such a bad dream.

Ever since that moment I realized that life is really too short. I know I have a purpose here on earth and life is short. When you get sick and are in limbo you realize there is no time to waste. I need to get busy living and get busy being real, again. Today I picked up my “Light on Yoga” book and started reading again. I was reading some of my favorite parts about the Yama’s and Niyama’s. I always come back to the Yama, Satya, this also happened to be my speech in teacher training.

Satya, truth, truthfulness and honesty.

So here goes what it is that I have been holding back all these years.

Exactly 7 years ago today was the last time I touched a substance. I can feel my heart beating out of my chest now as I write this, my hands are shaking and I feel dizzy. It is a hard thing to share and let go off. 7 years ago today I was an addict. 7 years ago today I was living in a world of sadness, loneliness, danger and fear.

One day I woke up and realized that this couldn’t be my purpose, this couldn’t be what I was born to do. I called my sister on the phone and said I am done. I need some strength and love and there she was to be by my side. I was ready to feel love again in my life, I was ready to feel safe again in my life, and I was ready to be the woman I was before I fell into my Alice in Wonderland hole and followed the rabbit for tea.

I have never looked back and never thought twice about my decision. Now here I am 7 years later. A better woman, a woman with love, a woman with purpose, and a woman who found her courage.

As I drove down to Florida today for my son’s doctor appointment the date hit me on the head. I looked up the endless sky in the flat boring land that goes on for miles in South Georgia, and thought to myself, “Girl you have come so far and it feels damn good.”

I love who I am and I don’t look back and hate who I was before. I feel sad when I think of that version of myself, but I still love that Rachel. I am a warrior. I look back and show my gratitude for that version of me. I look back at that Rachel, the one who weighed 100lbs, the one who watched too many sunrises and sunsets with no break in between, and the one who felt disappointment from her loved ones, and I am grateful for her. She was such a lesson to be learned.

I WAS AN ADDICT

I was an addict. I was not the fist rate version of myself that I strive for in my life. After 7 years I finally get it, it doesn’t matter. I am not that Rachel anymore. I am not the Rachel I was 5 minutes ago. I get to practice Satya every moment of my life, and I chose to start here.

I am released of this burden and guilt. I am better for owning my life and the woman who resides in this body.

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It’s Closing Time

31 Dec

What a year 2012 as turned out to be!

I quit smoking

I graduated my yoga teacher training.

I opened my yoga studio.

I traveled to Mexico.

I started my blog.

I held my first One Small Step walk for Prader Willi Syndrome and raised 10k dollars to find a cure for my son.

I wrote some amazing articles for Positively Positive.

I watched my sister Jennifer Pastiloff become to writing and yoga practice explode.

I cut all my hair off and dyed it platinum blonde(Thanks to my amazing friend Julie Goeddeke) it was such a fun change

I learned to meditate and connect with my true Self.

Did I mention I quit smoking?

I couldn’t talk about this year without talking about how  my ‘family’ grew. In the past year I have become friends with some of the most amazing and wonderful souls. Individuals that are so near and dear to my heart.

I have so much to be thankful for as this year comes to a close. I have had another amazing year to sit and watch my children grow into stunningly handsome and wonderful young men. I have come to watch myself as an outsider and continue to grow and practice my path of self-awareness.

I am so glad to have this year come to a close and not have any regrets, I don’t feel that anything is left undone. All the amazing things that I wasn’t able to fulfill in the days gone by are just new journeys waiting to unfold in my future.

I have had an amazing tough year and through it all I can say I AM BLESSED BEYOND BELIEF.

Lately I have had some health issues, the kind that make you really question your life and all that you have left to do.  As it would turn out my mother happened to be visiting me as I became ill. It has been during this time that I have come to learn what the true meaning of family is. The days when I couldn’t use my hands to dress myself, she was there. The days where I couldn’t get my children’s shoes on to go to school, she was there. I have always known what an amazing mom I had, but when it comes down to it she would but her own life aside so that mine would be better. That is the type of mother I strive to be in my life. My dad and sister call everyday to see how I am and the love I feel through the phone fills my heart so much so that it could almost explode. As this year comes to a close I am so aware of how my family is even closer, inseparable, and filled with truly deep and honest love for each other.

That being said I am still able to walk, talk, and use my body. For that I am grateful, for that I am blessed.

I want to say HAPPY NEW YEAR to all of the amazing people in my life, those I know well and those I have yet to spend time with. I want to wish a blessed new year to all the souls who walk this earth and make it a more interesting place.

Some great pics that represent this amazing year.

Here I Am

16 Dec

I feel a sense that something is missing in my life.

Oh yes, I have found it, it is writing and connecting with all of you.

The past six weeks I have been absent. In fact I have been completely silent. I have received many messages from all of you asking if I am ok.

I recently moved and was without internet for a bit. I resolved all my tech issues and  I was ready to get back on track and find my way home to writing.

Roughly 12 days ago I came down with some pretty scary medical issues. I spent all day Friday at the doctors and hospital with my mother to get numerous tests run.

I am officially diagnosed as having Fibromyalgia and am now awaiting test results for Rheumatoid Arthritis. The pain I have been feeling in my hands made typing low on the list of things I felt I could do.

I am praying that I don’t have RA, but I am in desperate need of an answer. The idea of having RA is absolutely terrifying. I have been feeling physically challenged lately, but I will not lie I am most definitely feeling a bit down and worried.

I hope you all have not given up on me and I look forward to writing again on a regular basis very soon.

 

Namaste and happy holidays to you all.

 

I thought I would add this photo of my kids with Santa today at Bass Pro Shop. It is definitely a classic.

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Rachel

 

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Believing in Divinity

1 Nov

How do you just convince yourself that everything will be ok? How do you do this when that overwhelming sense of panic sets in?

My heart starts to beat rapidly and the sound is reverberating in my head. My jaws are clenched tightly, so tightly that I can feel my teeth becoming dull. My feet and fingers are cold. I am feeling really nervous and the butterflies are swirling in my stomach. How can I stop all this? This is truly what I consider to be the mind body connection. There is a real fear here, a fear that started emotionally and has turned into a physiological reaction.I can sit an tell myself that everything will be okay, and remind myself not to get caught up in worry. Trust in the Universe that all we be right.

How can there be suffering in the world if you could just wish it away?  If I can just wish away my stress, then why can’t others have the same luxury?

Are we built to worry? Is it in my genetic makeup to be the type of individual who resides in a home of fear? I wonder this all the time. Was I born this way or have I created this monster myself? If I created this fear monster I better kill it quick. I would die to see this transferred onto my children.

I am coming clean. I have a fear of not having enough.

 I have a fear of running out of money, clothes, food, and everything in between why does this live in me?  There are individuals who have much less than I do, and still live in a world of pure abundance. These folks live in a world free of fear of lacking. What do these people possess that I don’t? Intellectually I know that things will always find a way to appear in my life. I am well aware that they may look different than I expected, but they will be there.  My work right now is on letting go. I am letting go of the constraints of a living a life of lacking and worrying.

A beautiful woman in California told me the following, “ You need to trust in the Universe and believe in your divine self.” I know what truly scares me is the possibility that deep down I don’t believe in my own divinity. I know that all of the fear comes down to “not knowing.” I live in a world of uncertainty even in myself. I can’t live in that place anymore.

 I don’t want to have cold feet, worn down teeth, and a heart that grew tired of beating too fast. 

 

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