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It Finds You

4 Mar

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.

juice fast

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.

Rewind:

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?

hate the scale

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.

elephant-on-the-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.

monster slayer

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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!

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

 

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The Gate Keepers

22 Feb
Elie Wiesel aged 15, late 1943 or early 1944

Elie Wiesel aged 15, late 1943 or early 1944 (Photo credit: Wikipedia)

 

Finally, two hours all to myself, I headed to the bookstore. I would  peruse the isles and touch all the books. I was going to get down on my knees and drop my bag and jacket and take up space. I love going to the bookstore. I love the smell and the order of all those words.

 

I entered the store, not a huge bookstore, but just big enough. Right in the very front is the book ‘Night’ by Elie Wiesel. I have heard my sister refer to his writing and words, I picked up the book to buy it. Two more books eventually made their home with me, but ‘Night’ was silently calling my name.

 

From the first word on the first page I am hooked. It isn’t a long book, it isn’t a difficult book. It is simple and pure. I can’t put the book down it is an addiction in the purest form. I feel my fingers run across the page and I close my eyes, the words are so gripping, in my soul I feel as if I am there with him. I see him as a 15-year-old boy in Transylvania, lost in a world of chaos.

 

When I read accounts of the holocaust it stirs up something deep in my soul. I am jewish. I know that most of my family escaped Europe before the war, but what if? What if my long-lost great-uncle Moishe was in Auschwitz. Will I ever know? Probably not. It doesn’t really matter. I still feel a connection. There is a massive web and I am part of it. I am Jewish and that is my heritage. I read the words of Elie Wiesel and my heart begins to hurt, it burns, my breathing slows down, I am immediately taken there.

 

How could anybody survive such atrocity? How could humanity have survived such madness?

 

I think it is immensely important that we never forget the times that called humanity into question. I will never forget. I will hold all those souls in my heart.

 

There is a beautiful line in the beginning of the book. As a boy Elie Wiesel was intrigued by religion and jewish mysticism. He was a student to the core, he read and studied and eagerly looked for a master to teach him the Kabbalah. Elie befriended a lonely, poverty-stricken outcast in town, Moishe the Beadle. This frail old man knew things that intrigued Elie. The two would sit and study together for hours and days. A special bond that jumped off the page at me. I recognized their connection, it is one that is so powerful it keeps you coming back, even when all those around you think you too have gone mad.  One afternoon after everybody had left the temple Elie remained with Moishe the Beadle, the two of them reading, praying, and questioning their faith together. Elie recounts that moment:

 

And in the course of those evening I became convinced that Moishe the Beadle would help me enter eternity, into that time when question and answer would become ONE.

 

I absolutely am obsessed with this line. I love this idea.

 

When question and answer are ONE.

 

I am absolutely moved to share with you the importance of this book. This work of art. Read it, re read it, and share it with a friend.

 

God Bless you Elie Weisel.

 

Thank you for being a Gate Keeper of History

 

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Find Me Now

21 Feb

Life is full of surfacey things. Chock full of material things to fill out time. Jobs, cars, iPad, and gym memberships, all things to keep us busy and paint a pretty picture of who we ARE.

I can stay busy all day writing in my blog or reading a book. I can play with my secret diary on my iPad or paint my nails. I can cook elaborate and beautiful meals for my family without any planning at all. I can do so many things. Is that who I am? I can make a list of all the things I think I am:

Mother, Daughter, Sister, Wife, Friend, Yoga Teacher, Aspiring Chef, Aspiring artist, Aspiring author, blog owner and so on.

Is that who I am?

i_am

I am a questioner and lover of the grandiose picture of life, the big picture. I want to know, when do we find out who we really are, what our real I AM-NESS truly is.

Do we find it during the happy and joyful times. Maybe we find that we are blissful and loving and a lover when we get married, maybe that is who we are. Maybe we give birth to a beautiful baby and see those tiny eyes and think, I am a dedicated soul for this little human, okay I get it, this is who I am. Maybe you get the career of your dreams and travel the world while getting paid buckets of money to do exactly what you love, you sit back and say. HOLY SHIT THIS IS WHO I AM, AND I LOVE IT.

Or is that not it at all. Is it found when you are in the dark places. The hollow and shallow place where no light can come in. The cave where you are all alone and can only hear the echo of your own raspy and tired voice. Is this where you find yourself? Is it when the call comes in that your child has an incurable condition, one that you can’t fix, is this where you find out you are warrior, that you have strength you never knew lived inside. Maybe you find out that your baby is going to die and you will have to spend two years watching his body slow down until it is no more. Is it then that you find you are filled with words and compassion and thousands of people will be changed by your words put to pen and paper. Maybe after years of anger and rage you finally reach the point to which your soul can take no more, you can finally rise up and stand again on your own two feet. Is this the moment?

I can’t answer any of the questions. I have a secret to share. I keep waiting for somebody to answer that question for me. I keep waiting for somebody to come and share with me the wisdom of this world. Where is this mythical creature who will show me the path, shine the light, and get me to my destination safely. My savior.

I can’t be the only one, in fact of course I am not. I think we all have a small desire in us to have somebody else help us along the way. I think the harsh reality is this, nobody is going to come and share their wisdom with me. It will be their wisdom and not mine anyway.

Where will you find yourself? Will it be in the lightness or the darkness? If has already happened, is it earth shattering?

earth-shattering

Please share and help shine your light for others.

 

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To Be Special

10 Feb

“My daddy has a tractor, my daddy has a key for that tractor.”

This is what my little guy squeals out as we walked through the Tractor Supply store yesterday. I would like to state for the record that I never thought I would be shopping at a tractor supply store. Yet here I am writing about it as if I were discussing shopping at CVS.

“My daddy wears boots. My daddy hunts pigs and deer.”

It reminded me of a memory I had of myself when I was in the 5th grade. After living five amazing years in California it was time to move back to New Jersey. It was an incredibly tough time for me. I loved California. I loved my life there. I loathed Cherry Hill, New Jersey. We lived with some close family friends while my mom searched for a house to buy and call home. Our family friends were actually my godparents and I called them aunt and uncle. They had two sons I had always revered as my cousins. Both were boys and were athletic, popular and well liked in our town.

We finally found a house and began the move in process. Two houses down there was a boy who was 2 grades ahead of me. He was in the same grade as one of my “cousins.” I had an overwhelming feeling of wanting to belong. It was such a strong need and I didn’t feel I possessed anything special inside me. I remember meeting the boy who lived two doors down and the first thing I said to him was, “My cousin is _____ .” I said that to quite a few people. I thought well that would get me in. That would give me that sense of belonging, that sense of worth.

Years later the boy next door and I were best friends, as close as friends could be. One night while we sat on the  swing on my front porch, as we always did, he reminded me of the first thing I ever said to him. He laughed when he recalled the story for me as we swung and smoked cigarettes. I felt so silly, so many years had passed and as an older woman of now 14 years old, I laughed at my 10-year-old silly self.

I WANT TO BELONG. I WANT TO BE PART OF SOMETHING. I WANT TO BE SPECIAL.

I see this now in my little angel. I see that same expression in my little ones eyes. He so desperately wants to be special, to be wanted, to be needed, to be loved.

If you follow my writing than you know my youngest has some emotional issues. I worry about him and what his future looks like if his struggles continue to escalate. Recently a new issue has come up for him. If I look at him a certain way or confront him on misbehaving than his response to me is, “You hate me, you don’t love me anymore.”  My heart breaks into a million little pieces when he says that.

I felt that same tinge as I listen to him tell people about his special daddy. I am happy that he loves and admires his father, it is the intense desire and need to be special that makes my heart ache. It is that desperate need to feel like he is part of something, special and that he is wanted. I want him to feel that way all on his own. I want him to know he is special without validation from an outside source.

We all have a need to feel special and be wanted and loved. Some of us search for it harder than others, some of us are more content to find that specialness within. I was much more quiet this past weekend at the yoga retreat at Kripalu than I usually am. I still walked away with 30 plus new friends, and 30 plus people who thought I was great. I started to think long and hard about how can you share your specialness without throwing it out there in someone’s face. What are the ways that I can share my light with others without stealing the spotlight?

I want to share this idea with my children. We spoke a ton about this at Kripalu. We talked about letting out light shine for others. I want to teach my children to share their specialness with the world by shining their lights for others.

I don’t think we are ever to young to take a look inside.

I am curious to see the different aspects of myself that shall arise as I focus on being a light sender in my life?

If you shifted from wanting to be in the spotlight to being the light sender, what would shift in your life?

special

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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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Home Depot Men

2 Nov

There is a Home Depot on Ponce De Leon Avenue in Atlanta. It is in the same shopping center as Whole Foods, you can imagine how busy this place is. On the corner as you turn in there is always a host of men waiting there, looking to get hired as ‘Day Laborers’. I have never  been one to look down on the men waiting there for work but,  I have been guilty of not looking at them.

I am not feeling well today, and with two sick kids in tow it has just been slow-moving. After an hour of sitting at the doctor’s office and x-rays we headed off to Whole Foods for a slice of pizza and some steamed veggies. When we were through eating I exited the parking lot at the corner where the Home Depot men stand. I got to the intersection right as the light turned red. It is a long light and for some reason I was compelled to look over at the men. There was probably about ten or twelve men there but, one stood out from the rest. He was dressed nicely. He was wearing a really nice pair of shoes, clean jeans, a nice button down long-sleeved shirt, and a clean white baseball hat. I couldn’t help but watch him. I started to create a story about him.

He didn’t look homeless. He didn’t look like a drug addict. He looked like a regular guy, a ‘normal’ guy, whatever ‘normal’ is. I started thinking what if he has lost his job and can’t find work in his field? What if he is a father and has kids to feed? What amazing character he has to go out and do whatever it takes to take care of your family. What a great example for his kids. I was deep in this fantasy about a complete stranger.

Of course my story doesn’t mean anything, and probably most of it isn’t even true. For all I know he could be a wife-beating drug addict who was arrested 49 times since last year. We shall never know, but I like my story better.

I started immediately to think deeper. What if my story is true? How many times have you passed a homeless person on the street and not given them a second look? That could be any of us, really it could. If you follow my blog then you know that the economy has hit my family really hard. We have had to give up everything and start over. We are still okay and we have great family that has stood by us. What if you don’t have any family? What do you do then?

I really think we need to start thinking like a community. I think we need to start looking at people and seeing them for who they are, not where they live or what they have. I think we should reach out and connect with people. I am not suggesting that you run out and try to save every homeless person you meet but, a smile is a start. A kind gesture goes a long way.

I didn’t grow up having a lot. We grew up in a modest home, had food in our stomachs, and clothes on our backs. I always knew that I would be taken care of, but I also knew as a young child that everything could be taken away in an instant. I think that has been the saving grace in my life over the last few years. These are tough times we are living in now. The comforts that we have grown accustomed to could be taken away and then what? What do you do when it’s all gone? Who are you, if you don’t have your ‘things?”

Are these people that we see on the street sub-human because they don’t have homes?

What if they were you in a not so distant past? I think we have a habit of sympathizing with things only when they relate to us. I think we need to remember that pain, hurt and loss don’t know economic lines or ethnic background. We can all be affected by these issues.

Go out in your world and take the time to really look at someone. Take the time to see the people who you have chosen to eliminate from your field of vision. Go home and write about what you saw in their faces. Read it to yourself and think about what you saw that you never did before.

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