Advertisements
Tag Archives: Facebook
Quote

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.

little_lion_man_by_bigdaddyez-d32ec9t

 

 

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?

Advertisements
Quote

Connections, Connecting, Connector

23 Feb

It feels like a Sunday morning, it’s not, it’s Saturday. Typical Saturdays at our house are so hectic, I should be out the door for karate now, not sitting and watching tv and drinking coffee. I was meant to be here, on my big plush green microfiber sofa. I was meant to sit and sip my coffee out of my new coffee mug, the one my mom bought me that reads, “Life is Good.”

I love Oprah. I really love Oprah. I cried when her show ended. I was elated to find her having her own network, The OWN network. I love it to the umpteenth degree. I have a new favorite show called, “The Trouble Next Door.” Here is the premise. A family in the neighborhood is in some type of crisis, desperate and running low on options. They call a neighborhood meeting and the family, who most don’t know, ask all of the neighborhood for help. Tons of neighbors show up to the meeting to meet this family in peril, they show up and take it on all the way.

This episode is serendipitous. This single mother has 5 children, one who is severely autistic, and one with major behavioral issues. Oh my heart beats for her. I feel like our hearts are connected. I don’t know her, she most certainly doesn’t know me, but I wish we could. Hey, this family is from just here in the Atlanta area, it could happen.

This mother is drained, she is sad, she is desperate, all emotions I have felt often. As the episode moves forward you see these connections building. They start out small, maybe like a flimsy wood suspension bridge, but then they build. Now they are the Golden Gate bridge. Miracles happen everyday, you have to ask for them. My heart is pounding as I see the courage it took for this mother to reach out to these stranger and just ask for HELP.

What changes will take place in her life? Has the course of her life been altered forever because she chose to connect, get connected, be a connector. It is powerful.

When Blaise was first diagnosed with Prader Willi Syndrome I was defeated. I was lost, angry, and hopeless. That never stopped me before in my life, why would I go there now. I got on the phone and started making connections. In 24 hours I was on the phone with two PWS families.That was nothing compared to meeting the Georgia chapter of PWS USA. I was so nervous that day. My stomach was way down by my feet. I felt the earth giving in underneath me with each step. I just kept telling myself, “put one foot in front of the other, keep walking, keep breathing.” I was completely unprepared for what was to follow. It was family, it was connection instantly, it was a group of people who genuinely looked in my eyes and let me know, “we are connected, you are one of us now, we have your back.”

I look back on that day over 3 years ago. Life changing and eye-opening. It was a day full of promise for me, a day filled with opportunity and hope that my boy would be part of something in his life.

My writing has brought me connections that would other wise never have appeared. I feel a sense of utter calm when I am in a room full of connected souls. That is what we all want. We want to feel connected. We want connections. We want to know:

WE ARE NOT ALONE, YOU AREN’T!

making-connections

Connections provide that safety net, that harness that holds you up in a ropes course. When I was 20 years old I did such a ropes course. I had to climb to the top of a tree, I don’t know it was like 80 feet high, probably not but it was really high. I had to then climb on a disc placed at the top of such tree, and jump. Oh, I had to jump and catch a trapeze. When I got to the top of the tree I could make it on the disc. My stomach was churning. I am getting nervous just thinking of that day, that moment in time. I remember yelling down, “I am going to throw up on all of you.” A voice came from down below, it was a friend I had made named Eliza. I could barely make out her words at first, she kept repeating them. “We are here for you, you can do this, we are all doing this together, keep going.” I don’t know but I just gave one big push and up I went. I said, “shit Rachel, I can’t believe this.” and then I jumped. I screamed as I leapt through the air, but I knew the 20 folks on the ground were there for me.

leap

In your dark night of the soul, or your brightest day of light sending, find your connections. Be a connector. I have this feeling crawling up inside of me. It is creeping up through my restless legs at night, it is finding a home in my belly, it is finding its way up to my heart. This is what i want to do. I want to make connections, keep connecting, and be a CONNECTOR.

Have you connected your soul to another yet? I say go out and make connections. Facebook connections are great, but make those real face to face connections. Get out there. Make plans with your friends even when your tired. Call up your friends on the phone, instead of texting. Make genuine and authentic connections, and then sit back and watch what unfolds for you.

hands2

 

You could reach down in your soul and find more than enough things to connect with. I look at my own life and realize I am full of connections waiting to happen.

I am connected to Special Needs Families

I am connected to recovering addicts

I am connected to the Jewish community

I am connected to people from Philadelphia

I am connected to people who love the Bay area in California

I am connected to people who lost their parents too young

I am connected to those who love yoga.

I could go on forever. Sometimes I pick and choose which connection I want that day. Sometimes it is more than one. All the time I know that they are there and waiting to bust out.

Are you a connector or are you searching for connections? Share below

 

Quote

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

its-a-mystery-500x325

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.

kripalu1

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.

faith

Image

Doesn’t Feel Good

28 Oct
Cover of "Life Is a Verb: 37 Days to Wake...

Cover via Amazon

I am reading an amazing book called, ‘Life is a Verb: 37 Days to Wake Up, Be Mindful, and Live Intentionally‘ by Patti Digh. I picked up this book and have been unable to put it down. Wanting to live a life full of intention is my main focus every single day.

At the end of each chapter there are two exercises for the reader to follow. One is to be done right away, the second is a daily practice. The second exercise is the one that you keep coming back to until it becomes part of you, this is the one I am most interested in.

The chapter I am currently reading deals with the theme of ‘judgement’, most importantly how to live a life without passing judgement. An irony not lost on me as I was on the phone with a friend. I have a friend who is in a romantic relationship that I would have a difficult time partaking in. I spoke this out loud and even used the words that I thought it was a ‘strange’ situation. I immediately felt unsettled inside. I knew instantly that I was doing something that was not congruent with the way I want to live my life. I want to find peace in my world. When I pass judgement on others, I invite them to do the same to me.

I caught myself trying to defend myself and say that I wasn’t judging but…We all know that was not the truth. My friend on the other end of the phone said, “Well, I guess it’s a good thing you don’t have to live their life.” I realized just how foolish I sound. Who am I to think that their life is strange or weird?

I felt terrible when I hung up the phone. It doesn’t feel good to be judgmental. It doesn’t feel good to gossip. It doesn’t feel good to be in-congruent.Certain things become clear to me, as I keep going deeper and deeper in a life of living intentionally.

It doesn’t feel good to be one way in the world, and another way in your private thoughts. They need to match up. They need to be consistent.

I need to be consistent.

My inner world needs to match my outer world. I am still a student. I am always willing to keep looking in and making the changes and shifts needed to live a life full of meaningful moments. We don’t remember days we remember moments. I want to remember my moments as ones that were compassionate, loving, joyful, caring, authentic, and kind.

I was recently told by a friend to do it all with kindness. Even when it is hard, do it with kindness. This is a practice I plan to take very seriously.

Where in your life can you “Do it with kindness?”

Who I Am

14 Sep

The response from my blog last night was overwhelming. I couldn’t have imagined just how many people who have reacted to my post.

I am so full of gratitude for all those who read it and felt that it moved you in some way, big or small.

As I sat and reflected today upon my post from last night, and the positive response to it, something became clear to me. It seems to me that when I write, as I always try to, from a deeply authentic  place, I reach more people.

I truly love to share posts about things that are uplifting, positive, and inspiring as much as possible. Those are all needed. We also need some real honest talks about the stuff that we all wish didn’t exist, the stuff that some of us like to hide.

I wanted to reach out and share what I feel is most important to share.

I haven’t written this in a while so I will repost.

 

Who I am:

I am a yoga teacher and I don’t weigh ninety pounds. I am a woman and I have curves.

Although I quit smoking 7 months ago, it took me 20 years to quit.

I sometimes yell at my children, loudly yell at my children.

My house is messy more than it is clean.

My car looks like a war zone on the inside.

I haven’t meditated in weeks.

I don’t call people back like I should.

I am at times not a good friend.

I am at times a cranky wife.

I love cheesy pop music. I rock out to it in my car.

I love making connections with people. A simple positive connection can change my whole week around.

If I could I would eat cheese and bread for breakfast lunch and dinner everyday of the week.

Every time I walk into my yoga studio I am terrified to teach, but I do it anyway.

You get my point. I am not perfect and my life is not pretty, but it is interesting. We are all in the same boat. Don’t let people’s Facebook pages fool you. We are no different from the person next to us. We all breathe the same air and we all have blood pumping through our veins.

I promise to keep writing about being real, about being a real mom, a real woman, and a real human in this crazy world. I promise to always be here to remind you that “perfect” doesn’t exist and we are all fighting hard battles.

 

Namaste-

One Precious Life

24 Jul

 

I was in a poetry mood today and decided to read some of Mary Oliver‘s work. I stumbled upon a poem that truly spoke to me at this very moment. Entitled “A Summer’s Day” it is a beautiful piece and the last sentence is my favorite.

Tell me, what is it you plan to do with your one wild and precious life?-Mary Oliver

So I immediately started thinking, what is it that I plan to do with my “one wild and precious life?” This topic has been on my mind all week-long. I have been under the weather and possibly have an auto immune disease, or so my doctor thinks. This of course brings up a ton of stuff for me. I go into a straight panic when I think about not being there for my children, in fact I get physically ill even thinking about it. I decided almost a year ago that it was time to really get healthy, not just “sorta” healthy, but all the way healthy. I did the first thing and that was to give up cigarettes. I started exercising regularly and eating really healthy. I know I can’t prevent lighting from striking me, but I don’t have to do bad things to my body to make me sick. I am preventative!

That takes care of the body conversation, now what about all the other stuff, like living each and every moment authentically. The first part of that journey for me was taking teacher training and doing something that I love. Continuing on the journey to truly live my one precious life is to take risks and have faith in myself. I am not saying that I am going to jump out of an airplane tomorrow, but I am definitely stepping out of my box more.

I read my sister’s blog today on saying “YES” and it really got me thinking. Where in my life can I say yes? I am going to start saying yes to myself, yes to my ability, and yes to reaching for the stars in my life.

 

%d bloggers like this: