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Tag Archives: Georgia
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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!

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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.

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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.

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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

 

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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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All Grown Up

22 Aug

 

Sara Blakely 2012 Shankbone

Sara Blakely 2012 Shankbone (Photo credit: david_shankbone)

 

 

Did you ever think that you would be married to a skateboarder with two kids and living in Georgia? I did imagine all those things, except for living in Georgia. Yes I always knew my life would look relatively close to what it does.

 

I always knew that I would have tattoos. I also knew that I would most likely marry somebody who also had prominent ink. I always had a thing for skateboarders, so no real stretch there. I always knew that I would marry somebody that was a bit like me, somebody who lived more on the edge, than on the fence. I always knew that I would have children who would possess a great amount of spunk. I always knew that I would not always fit in with “typical” suburbia. I love suburbia, but at times I am all too aware that I am a round peg in a square hole.

 

 

I recalled the story last night about when I met the owner of Spanx®, Sara Blakely. I was recounting how amazingly down to earth she was. I spoke about how friendly and warm and approachable she was, oh and she just happens to be a BILLIONAIRE. That statement really got me thinking. Does money really changes people?  Of course money can change you slightly, but I don’t believe it can intrinsically  change who you are on the inside. I truly believe that if I was suddenly rich that I would still be me, the same me that I am now. I can’t imagine being altered to such a degree that my true self  is not recognizable. I believe that the people who become successful and distance themselves from the common folk, or believe themselves to be somehow inherently better, were always like that inside, or at least partly like that deep down.

 

Two years ago we lived in a big house, had beautiful things, and lived a pretty good life. Last year we lost our home, moved into a very modest house to rent, and gave up many of our ‘things.’ That all being said I am still the same person I was when I had the big house. I didn’t change because of the square footage of my house. I haven’t changed because of the quantity, or lack of quantity of ‘things‘ in my life.

 

 

Having these type of dialogues have become frequent for me lately. I am always striving to be more self-aware, more conscious of who I am in the world. I always hope that I can show people by my actions that it is always a safe bet just to be yourself.

 

 

 

 

My Secret Confession

6 Jul

I thought I would lighten the mood tonight and come forward with my super secret confession.

Since I was in the 6th grade and fell in love with The New Kids on the Block, I have loved Pop music. Yes, I said it! Cheezy pop music that you don’t dare admit you like.

My friend Emily who writes an amazing blog about her journey with her son with Tay-Sachs. She had written awhile back about listening to pop music in her car, singing at the top of her lungs, and just feeling good. I read that and thought. Oh my god that is totally me. Of course this is not the only music I listen too, but when I am in my car it just gets me going, gets my kids dancing, and suddenly sometimes things just seem not so bad.

It was another scorching hot day here in Georgia. We drove with the air conditioner on full blast, as in arctic chill cold. Then I hear those little voices from the back seat, “put on a song mommy!” So pop music it is, and they are rocking out, and so am I. We are bopping our heads, moving our bodies, and singing like we don’t care who hears us. It brings such a smile to my face. I am so grateful for moments like that, moments that exist amidst the chaotic storm that is usually brewing all around me.

As Kelly Clarkson‘s “Stronger” came on everybody was singing. So yes, it’s true I love Kelly Clarkson. I feel stronger when I am singing that song. Of course I am not singing about being broken-hearted, but I am singing about being stronger. I have always heard, thought, and said….WHAT DOESN’T KILL YOU MAKES YOU STRONGER.

I this to myself all the time when I think of losing my dad, living thousands of miles away from my family, and the diagnosis that both my children carry. So yeah when Kelly is singing I am singing right there with her. It makes me feel good, and I can not lie, I really like feeling good these days.

Amazing how you can relearn to do things. I learned how to feel good and find joy in my life from the inside out, not from the outside in. It really has been a bumpy road, but I am getting so much better. I felt a feeling all day that wouldn’t go away. It is a great feeling. I wish everybody felt this feeling. What is this feeling?

I am grateful. I am so very grateful.

As I sing and dance to cheesy pop music in my car, I am reminded how grateful I am to have ears to hear music with, a voice to sing with, and a body to dance with. I am grateful to have kids that think my singing is awesome, and that when I talk to myself in the car it is funny. I am grateful today and everyday.

 

So rise up with me and confess what makes you feel good, what brings you joy, what makes you grateful?

You Can Make It Anywhere

12 Dec

What is a family?

I have always moved around in my life. There have been many years where I lived far away from my entire family. So what I learned early on is that I had to make a family for myself, for all the days that I couldn’t be with my blood family. I have always know that people can be family to you, even if that weren’t blood related. I have had the amazing opportunity to have so many amazing friends in my life who I consider family.

In 2006 I moved to 

Unfortunately my family still lives in

This separation brought on a whole new meaning once my kids were born. For those of you who know me, my mom, my dad, and my sister, you know that we are a pretty tight bunch. I know the distance apart is I think just as hard on them as it is on me.

I moved to Georgia knowing not a single person other than Jona, my then boyfriend, now husband. It was really not easy to make friends here. I really struggled, and to be quite honest, that was a first for me.

Now, 6 years later, here I sit happy full of family in my life. I have great friends who are family and now a great family by marriage.

I have always been close with my husbands parents, but as the years have gone on, we have gotten closer and closer. I know of for a lot of you out there, you really couldn’t imagine yourself just going over to your in laws house to hang out, with out your spouse. I DO ALL THE TIME! YOU SHOULD TRY IT, IT’S FUN!!!

I really miss my family, I mean I really miss my family every minute of every day. The thing is this, I had to see that I had other people right in front of me who wanted to help fill that void for me.

In the years since I have been here I have blessed to have made my family grow. I have great girlfriends who are like sisters to me, great in-laws are look after me like my own parents, and I have many more people to meet in the years to come.

To me it is really important, to build and grow relationships that are strong and meaningful.

I really wanted to write this post during this holiday time. Of course this is a time when families get together. For so many people going home is stressful, they don’t get along with their in-laws, they fight with their siblings, or they have to see old friends who have left their life  from the town they grew up in.

Family is what you make it. You can make a family anywhere. If for some reason things are strained with your real family, look to the people around you. You may have a really strong family and didn’t even recognize that it was in front of you the whole time.

There is another really important family in my life it is my PWS family. I don’t know how I would have survived the last 2 + years since Blaise’s diagnosis without them. Every time I meet a new PWS family there is an instant connection, like we have known each other all along. I love this family of mine. Thousands strong and always getting stronger. We are an amazing family. I have never seen a group of people, many who have never met but online, many who are thousands of miles apart, do so much for each other. This is a family like no other I have ever seen. This is a family that at first I didn’t want to be in, but now can’t imagine my life without. Check out our fan page on Facebook to see some of the amazing folks I am talking about.

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