My latest essay on MindBodyGreen. Share and comment if inspired.
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.
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.
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?
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.
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.
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.
(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”.
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.
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?
My teacher in the 4th grade was Mrs. Wheeler. A small petite woman with white hair and a raspy voice. She wore skirts that came to her knees and I always remember her fondness for plaid. One afternoon she came up and whispered in my ear that she wanted to talk with me privately. She had assembled a list of students whom she had created a special program for, it was a creative writing program. I was so honored. I couldn’t believe it. Every day at lunch while all the other children ate their Bologne sandwiches, we went to the library and wrote stories. I still loved reading and writing then, it still brought me joy.
When I entered middle school my love of learning started to fade. I replaced it with boys, cigarettes and pot. Once I found a new love my books and poems just got old and collected dust. My grades began to fall, and school was just a meeting place, it wasn’t a place of adventure anymore. I felt tinges of sadness when my poor english class grades came in, I felt ashamed because I loved to read and write, but it was quickly replaced with my latest crush, or the next party.
I dropped out of high school in the middle of my junior year. This is a very touchy subject in my family. I don’t have any regrets but there is always a wonder. I was to enroll in community college and get my GED, nothing ever works out as planned. Instead I went to work got a job managing a big health food store, I got life lessons. I always convinced myself they were more valuable than any book could give me. Truth be told, I wanted those books, I wanted the words swirling around in my head, I wanted to have a vernacular that would make people’s heads spin.
So my story got stuck there in the middle of my junior year. My “I AM NOT SMART ENOUGH. I AM NOT SMART ENOUGH TO BE A WRITER.” I got stuck there. I was like Robin Wright Penn in “The Princess Bride,” I was in the quicksand, but I didn’t have a prince to pull me out. So there my story stayed, for years it pulled me down.
I finally got my GED went to college, of course left a year shy of getting my BA. New story takes in. I CAN NEVER FINISH ANYTHING, AND I AM NOT SMART ENOUGH. They are perfect for each other, they go well together. Like a good wine pairing.
Over the years I dabbled in finding my love of books again, finding my love of words and writing. Nothing ever truly stuck with me. 35 years old now and I have that flutter in my soul again. I am giddy with excitement again over a good book. I am stealing away moments to fill myself with words on pages that I run my fingers through, scenes where I pretend I am there, lines I wish I had written. My sister reminded me lately, “If you want to write you have to read, and read all the time.” I listened intently to those words, I took them to heart, I sewed them inside my chest where I think my heart would be. So I read, and I read. I read essay’s, books, magazines, just anything I can.
I am time traveling. I am traveling back to the early 80’s in California. I am just 5 or 6 years old. I am a great reader, I am one of the best in my 1st grade class. I love reading and I see a bright future for myself. I think privately, “I am smart. I AM SMART.”
After reading my sister’s latest essay about the turns we take in life, the left turns and right turns, I thought about my life. Who would I be if I had taken a different turn? Would I have been a scholar? A history teacher (my major in college), An author? The owner of a multi million dollar company? Maybe, Maybe not. Maybe all the turns I took are exactly the right turns. Maybe instead of right turns I took left turns, that sounds like me, I never listen to what people tell me anyway. Maybe those left turns are the ones that will make my new-found love of writing more interesting. I most definitely lived some wild and crazy moments, maybe those are the left turns I needed to have. It never really is possible to know what, if any, of the choices we make are right or wrong, they just are.
I see the bookcase in my room in 1985 California. It is pine, completely filled to the rim with every category of book, mostly books on marine biology, another early love of mine. I sit and remember what those books smelled like and how they made my insides swirl with excitement. Here I stand now that same girl, filled with the same desire and joy to fill my soul with words and knowledge.
Here I am ready to change the story, to make a right turn.
“I AM SMART. I DO FINISH THINGS. I AM A LOVER OF ALL THINGS BEAUTIFUL.”