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Death, Bones and Souls

26 Feb

I want to close my eyes and hear my father’s voice. I want to remember what it sounded like when he called my name, “Rachel.”

Shit, I can’t remember, 30 years have gone by, he is still dead. I have a headstone to look at now, I would prefer his head and not that marble slab. That marble slab that I have called my dad for 30 years. It’s somewhere in New Jersey, I don’t even know the town. My last visit home we got lost trying to get there. I was so ashamed of myself. How could you get lost going to find your dad, going home? I should have it tattooed in my brain. Go here on the interstate, get off on that exit, enter the cemetery, go down to the far left corner and there it is, five rows back. I don’t have it in my brain, so I call my aunt and she tells me where to go.

I stand and read those beautiful words, “You are my sunshine……under you light we shall grow.” I stand there and get really freaked out. He is in a coffin under me. Yuck, I don’t want to be buried. I want to be cremated and my ashes scattered at sea. So I stand there and feel bad, I am standing on top of my father, it is so morbid. I look around and see that just a few rows away is our family friend Susan. She is near my dad, maybe they keep each other company. Maybe they reminisce about old times, when they were young and funny. I look further back and see the four jewish stars. The big stars that make up the headstone of the four children who died in the fire. I knew that story my whole life. I cried for them my whole life. I cried for their parents. I used to think my dad would look out for them too. He must have had a big job, trying to make all those souls laugh, he was such a funny man. Mel the Jew. I miss you Mel the Jew.

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(My dad is a teenager here)

What would you look like if you hadn’t died? Would all of your hair have gone? You would still have those mesmerizing blue eyes, big like saucers. Would you still be skinny? A skinny man with no hair and big blue eyes. Wondering does no good because you are still dead, Mel the Jew is still dead. My dad is still dead. He isn’t going to put on that wig and dress up the Bert and Ernie dolls ever again.

Stuck in time and space. That is what happens when you die, I think. I am a big believer that your soul leaves your physical self and moves on. Stuck somewhere in time and space, watching over us, or maybe coming into another form. My memory doesn’t change, my memory doesn’t leave. Your body is the same in my visions. Mel the Jew will always look the same, he will always be the same. He will always be 38 years old, a big bald spot in his head, blue eyes like saucers, skinny legs in tiny cut off jean shorts. That is how you will always be, even if you aren’t, not really that person anymore at all.

The soul leaves but our memories stay. My step father Carl will always be strong and healthy with a thick head of hair and a big smile, his body gone, but not my memory. That is how he shall stay with me, just like that. My beautiful cousin Natalie. She will always be tall with those incredibly white teeth. She will always have those gorgeous big lips that red lipstick looked stunning on. She will always be young and perfect, just like that. My friend Pat who died 15 years ago, alone in a hotel room, he isn’t that. He is handsome and fit, he is the produce manager at the health food store, he loves Frank Zappa. That is what he looks like in my permanent record. I returned home at 5am from my sleep study. Half awake I opened my computer. The first thing that opened up on the screen was a picture of Ronan. I immediately fly away to New Mexico and think of his mom. How is she? I ran my fingers across the screen and touched his beautiful 2-year-old face. I thought this is his permanent record. He shall remain like this forever in time and space. Beautiful and golden.

Death will come to us all. I learned that far too young. Death means I will see you no more, not in the physical realm anyway. Death meant that your bones left, they went somewhere that I didn’t care to know about. It was your soul that I was more interested in. I needed to know that you could still hear me and see me, even though you were out of reach.

So your bones are in a coffin somewhere, or your ashes are out to sea, and your soul is floating up in the sky, but your picture is as it were when you were perfect and here. Your memory is when you breathed and laughed and called my name, “Rachel”.

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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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Will You Forgive?

16 Feb

Saturday night and I am cozy in my bed with my two little kittens by my side. It is freezing outside. A beautiful sunny day has turned into a cloudy and bitterly cold evening. I turned up the heat and got under the blankets. I am all alone in my room as I turn on the Beyonce interview on OWN. She spends quite a bit of time talking about her daughter and being a mom and all that comes with being a parent.

There was a scene where Beyonce is filming herself at home in her bed. She looks at the camera and talks about feeling the baby move for the first time, the excitement that comes with those first kicks.

I immediately shutter. I try not to think about things like that regarding my own pregnancies. I have not forgiven myself yet.

I have not forgiven myself yet.

My sister wrote a beautiful essay about our sweet angel Ronan and his passing on February 15th. She wrote  when something like this happens, when a child dies, you realize why lie. Why lie about anything.So here I am. Being as real and raw as I can be. As I sat and watch this woman on television talk about how she felt her baby kick and how exciting that was I realize that I still feel like a failure. I feel like I let Blaise down. Why wasn’t I one of those women counting every kick, monitoring every moment in the womb. If I had would things have been different? Could I have changed things in his life? Would I have saved him and I from three years of suffering. All of the tests were fine when I was pregnant. I did feel his body move inside me, but there were no big baby kicks, like the ones everybody talks about. Some babies are quiet in the womb, the doctors told me .

Why didn’t I question that more? Why didn’t I push more? Why didn’t I do more. More Period.

It still weighs on me that he wasn’t diagnosed with Prader Willi Syndrome for three years. Of course it took me a year of testing to get that diagnosis. I did all I could once I knew there was work to be done, but there is always the feeling of not soon enough. It still weighs me down in my few moments alone. I still feel that it was up to me to protect him, and I didn’t, not soon enough.I try not to watch things regarding pregnancies. They bring up such raw and unnerving feelings for me. I push these things down and away. I want to believe that I have come to terms with the way things transpired in my life, in his life. Things happen exactly as they are supposed to, I want to believe this, but I  am left feeling that I got it wrong somewhere.

I don’t wan to lie anymore. I still feel that in some way I could have done more. It leaves me feeling incomplete. I want to say that I have been the best most powerful and dedicated mother. I worry sometimes that I wasn’t dedicated enough or strong enough in the beginning, in the first moments when it mattered the most. Does that set the stage for the future?

This is the most honest and human I can be.

Where is your honesty wanting to come out. Post below and share it now.

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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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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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Love Me Forever

27 Sep

Will you love me forever?

Will you always be my friend?

Will you release judgement of others and stay true to yourself?

Will you always be my best friend and my brother?

These are the thoughts I had today as I watched my boys play together in the back seat of the car. I thought if Blaise could communicate how he was feeling it would sound like that, or at least that is how I imagine it to be. As I watch my angels play together and love each other I pray that it will always be this way.

In my private secret moments I worry about the future of their bond. I worry about what happens when my youngest angel grows up and is barraged with the voices of others. What happens when others aren’t as accepting and open to his beloved brother. Will he have the strength to stand tall? Will he have the strength to push past the negative chatter and believe in his brother as he does now? My heart aches when I think about it, I feel a burning sensation in my soul.

When my children grow into adults will they still laugh and play as they did today? Will they look into each others eyes with love and concern? Will they walk to the ends of the earth for each other? Will they LOVE EACH OTHER FOREVER?

For many of you reading this blog the concept I am presenting may seem foolish or silly. Of course they will love each other, they are brothers. It is actually not foolish at all. We live in a harsh world. We live in a world where our youth are bombarded with the idea that they have to “fit” in to be accepted. They have to look right, act right, and “BE” right. So as my beloved ‘special’ child grows up I worry about the day that my baby may be on the opposite end of hate. I worry about my littlest angel wanting to be accepted and fit in and feeling resentment for being the sibling of a ‘special child’. You may think I am harsh for writing this but it is an unfortunate reality.

So I sit and bathe in these extraordinary moments of love between the two beautiful creatures I call my sons. I send them all my love and hope that it envelopes them and wraps them in pure goodness. I pray that this will all be enough to keep them together forever. I imagine that when my ‘special’ angel asks his brother, “Will You Love Me Forever?” baby brother angel replies, “Till the end of time!”

namaste and happy loving!

The Special Child

7 Aug

 

Dear my special child,

Today marks your second day of kindergarten, I can’t believe how far you have come. You truly are my special child, but not for the reasons found on your medical records.

You are a shining example of what it means to live from your heart. “He is such a love,” they said to me as you left the bus. Of course this I already know. Your “special-ness” can’t be seen on an x-ray or revealed through a blood test. Your “special-ness” resides somewhere much deeper.

A sense of peace comes now as I think about your future. I know that you walk on a path that was set in place before I ever held you in my arms. You are special in more ways than one.

I am so honored that you have entrusted me to care for you. I am so lucky to have such a special child to call my own.

You have exceeded all of my expectations and more. I am amazed by you every moment of every day. I am in awe of you. I am constantly in a state of wonder at the magnificence you possess.

Thank you for always giving me something to believe in and have faith in.

I love you forever my special child.

 

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