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Tag Archives: Mother
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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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Tiny Beautiful Things

18 Feb

It was so cold today. The sun was shining but the wind  and the air were bitter. My fatigue had set in deeply. My bones felt weak and the cold air felt as if my body was thrust into an ice bath. The burning that comes before your body parts eventually go numb. I drove home from teaching tonight with my seat warmer on and the heat on full blast. I had no need for music as I drove home. I was craving complete silence. I could only hear the wind as it rushed past my windows on the outside of my car.

My thoughts are heavy tonight, shackles weighing me down. I keep thinking I love what I do. I love teaching yoga. I love being a mom. I love writing my blog. I love so many things, but… I feel like I haven’t found my dharma yet. Is there some magical feeling that takes over when you know you have found your dharma? Is there a true physical feeling that comes over your body when you know you are doing the right thing in your life?

dharma-572

I couldn’t stop thinking I am 35 and I still haven’t found my calling, I don’t think. Is it supposed to look a certain way? Oh I wish for the answers. I had this conversation running around inside my head driving home t through the black cold night.

I needed to clear my head so I picked up one of my new favorite books. “Tiny Beautiful Things” by Cheryl Strayed. An amazing book, written in question and answer. The questions are written to Dear Sugar( she is sort of like Dear Abby, but more fascinating). A truly brilliant read. I opened up a page and couldn’t believe what I was reading. A 26-year-old girl, a writer, had written her Dear Sugar letter about exactly what I am going through. A feeling of despair, a feeling of why hasn’t this happened yet,  a feeling of did I make the right choices in my life? There are no accidents, I opened this book up right when I meant to. I opened the book up right to that page. It was clearly calling me.

Tiny_Beautiful_Things_book_cover

Sugar responded to this young and despondent 26-year-old writer with beautiful prose. My soul understood exactly what she was saying, even though she wasn’t saying it to me. Sugar writes, although she herself had grandiose plans  that hadn’t come to fruition at a young age. Sugar writes, it took a plethora of things to take place before her first major piece of work. Things had to happen before it was to come out of her soul. She had a life to live, relationships to have, sentences to write that would go absolutely now where, and so on and so on.

Is this where I am now? Working on sentences that are going nowhere. Am I working on relationships that are just the building blocks for what is to be my grandiose final calling in life?

At the yoga retreat in Boston my sister asked a question to the room  full of 35 people. She asked, “what is possible for you?” I was assisting that weekend so I chose not to partake in the excercise. Now I want to answer.

It is possible for me to stay consistent. It is possible for me start something and  finish it. It is possible for me to find my calling and know it  in my soul.

WhatIsPossible

It is so easy to get wrapped up in the lives around you. The lives of your friends, your family, your neighbors. They can easily seem to have so much, to have  a sense of love and contentment in their lives, something that you easily feel is missing. It is much harder to just send those people love and turn that attention on your own soul.

I want to find my dharma and sit with it. I want my dharma to feel like a bean bag chair. I want to sit in that bean bag chair with the feeling that you can’t or don’t want to get up.

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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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COMPASSION….COMPASSIONATE

8 Apr

Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others.Compassion becomes real when we recognize our shared humanity

 by Pema Chodron

I just returned home from easter dinner and decided I needed to read my Brene Brown book “The Gifts of Imperfection.” I came right to the page with the quote above. It really spoke volumes to me this evening. I am completely stuck on this idea of compassion not only for my son, but for humanity in general. I realized after Blaise was diagnosed that I had not practiced enough compassion in my life. When you have a child with special needs or a medical condition of any kind you change your ways really fast. I not only began practicing compassion, but made it a full life changing event for me. I have compassion every where I go. I look at everybody I meet and think to myself the same thing over and over, “You never know what somebody is going through, you never know what it is like to walk a mile in their shoes.” So I just send people love.

I can’t help it when it comes to my son that I wish people would have more compassion for him. I don’t want people to pity him, he is an amazing individual, but compassion for the challenges he has. It breaks my heart into a million pieces when I can see that people don’t have compassion for him, when they don’t even realize the faces they are making when they look at him, and how those faces can really hurt. I can always tell when somebody is looking at my child like he is less than, and that really gets me going. I want to go to the top of a mountain and scream to the world.

WHY CAN’T YOU SEE ALL THAT HE IS, INSTEAD OF ALL THAT HE ISN’T!!!!!!!!!!!!!!

I can see all these things in him. I see an extremely loving child that can make anybody smile. I see a child that will never forget your face or name after meeting you just once. I see a child that lights up when his family walks in the room. I see a child that has a unique gift with becoming one with music. I see a child that can memorize things I still can’t as an adult. I see a child with the gift of laughter. I see a child that has pure joy running through his veins. I see so many things, why can’t everybody see these things too?

I will never stop fighting for him. I will never stop correcting people when they say hurtful things to him. I will never ever stop standing by his side and telling him to stand tall. I will always let my son know that he has a place in this world.

I wish that all people realized how in reality we are all just one people. That we are all a shared humanity. My life has opened up tremendously since I came to that realization myself. I have opened my heart up and I have been overflowing with joy and abundance of love. It is a sad and lonely place when we can share our experiences with one another. It is a cold and dark place where we sit in judgement of our fellow-man. I prefer to sit in the light of allowing myself to feel joy for others and pain for others.

3 words for today

BE COMPASSIONATE NOW

I will teach both of my children the same lessons I live by. If you want love, then you must be love. If you want joy, then you must give joy. If you want COMPASSION in your life, then you must have compassion. You must BE all the things you desire to have in your life. It’s that simple and that real.

I know this may seem like the rant of a pissed off mom, and you may be right. When I gave birth to my son I had no idea how my life would change, how much he would change me. I am so blessed that he chose me to be his mother, that he chose me. That is a very powerful statement, and true.

HE CHOSE ME TO BE HIS MOTHER. 

That is a big responsibility and I intend to live up to his expectations. I will help hold him up to the light until he can see his light shining on his own. He is a force in this world and I am here to clear a path for him. I will walk with him to the end, no matter what it takes.

This was a post one of my PWS moms posted on her page. It is brilliant and I have been wanting to share with the world. Thank you Janis!

In Our world, Nobody should have anything negative to say about a person with special needs. If you only knew what they have gone through to get to where they are. The years of different therapies, special diets, multiple doctors appointments and special equipment. Every milestone is a miracle. Don’t look down your nose at tehm, admire them for their perseverance and their ability to still smile after all they have been through.
WE ARE THE VOICE OF 
PRADER-WILLI SYNDROME
 
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