Prader Willi Syndrome, Q & A Series

The Manifestation Q&A Series. Rachel Pastiloff: Writer, Yogi & SuperMom.

July 20, 2012

Welcome to The Manifestation Q&A Series.

I am Jennifer Pastiloff and this series is designed to introduce the world to someone I find incredible. Someone who is manifesting their dreams on a daily basis.

Ok, maybe I am a bit biased because Rachel Pastiloff is my sister but she is the coolest person I know. She is an amazing mom, yogi and writer. In fact, she writes my favorite blog called 3 Words For 365. She is also the founder of the Facebook page I Am A Fan of Somebody with Prader Willi Syndrome (my nephew has Prader Willi Syndrome.)

Below find her inspiring Q&A where she talks about being a mom of a child with special needs, quitting smoking and becoming a yoga teacher among other fabulous gems.

I am so proud of my sister, who also happens to be my closest friend. I have invited her to assist me at my Manifestation Ojai Retreat Oct 19-21 in Ojai, which is almost sold out. Click here is you want to sign up. She will also be assisting me at Kriplau at my weekend program there Feb 1-3, 2013. (Email me to sign up for Kripalu weekend in the Berkshire of Massachusetts.)

Get ready Atlanta, because Rachel will be taking Manifestation Yoga to new heights. 

Put down whatever you are doing and read about her inspiring journey and her love of meditating, pizza and her boys.

My sister Rachel and I with our beloved Steve Bridges who passed away shortly after my Mexico retreat. This was taken in Mexico at my retreat.

Jennifer Pastiloff: What are you most proud to have manifested in your life?

Rachel Pastiloff: I am proud of manifesting my children. They are my greatest gift in life. They are my teachers, my best friends, and the most honest people I know in this world. They give my life purpose and a reason to wake up and smile at the sun everyday. I am proud to have manifested amazing relationships in my life with my family and new and old friends. I am blessed to have the most amazing relationship with my mentor, the incredible Jennifer Pastiloff, the one who inspired me to Yoga Teacher Training, and to start writing my blog. I feel blessed to have people who believe in me.

Jennifer Pastiloff: What is the greatest lesson you have learned this past year about yourself?

Rachel Pastiloff: That is really an interesting question. I have learned so many lessons about myself this last year. I have learned that I am lovable and worthy of being loved in the truest form.  I have learned not to have expectations. I think the most important lesson I learned this year was how to communicate with people in an authentic nature. We take communication for granted. We hide behind our emails and texts and forget what it feels like to be part of a community. The greatest lesson I learned was to have courage to live with my heart, that helps me communicate much more effectively with not only my children and husband, but my community at large.

Jennifer Pastiloff: What is the greatest lesson you have learned from your boys?

Rachel Pastiloff: The greatest lesson I learned from my boys is to wave your Freak Flag high. We all are different. We all love differently, learn differenlty, look differently, but inside we all want the same thing. TO BE LOVED. My children are such resilliant little creatures full of wonder and they are oblivious to much of the discrimination that fills our world. I get strength from them to realize it is ok to be different, in fact I am rather fond of being “Not Normal” it fits me and my personality just fine.

Jennifer Pastiloff: From having a child with Special Needs?

Rachel Pastiloff: Having a child with special needs is a challenge, but one that I happily face everyday. I have always been what I considered a strong person, but this challenge took me to new heights. I have learned how to have real compassion, real strength, and unconditional acceptance. There are days that go by with no problems, not most, but some.  Then there are days where I feel like I am drowning. All these days offer me the gift to grow and learn and keep building compassion in my life. As the parent of a special needs child I see all the things he does as miracles, things that many parents of “typical” children take for granted. I celebrate all the moments, be they big victories, or just small baby steps. I am filled with pride for all that my child accomplishes everyday. He is definitely not a quitter, and it pushes me on to higher mountains with him everyday.

Blaise, who has PWS, rocking out! He loves music.

Jennifer Pastiloff: Can you tell us about Prader Willi Syndrome? I think most people do not know what it is.

Rachel Pastiloff: Prader-Willi Syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity. The symptoms of Prader-Willi Syndrome are thought to be caused by dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including hunger and satiety, temperature and pain regulation, sleep-wake balance, fluid balance, emotions, and fertility. Although hypothalamic dysfunction is believed to lead to the symptoms of PWS, it is not yet clear how the genetic abnormality causes hypothalamic dysfunction.

Basically, to sum it up it can be said that it is a syndrome of STARVATION. To learn more please visit www.fpwr.org.

Jennifer Pastiloff: What is your vision of yourself in 1 years time?

Rachel Pastiloff: In one year from now I will be teaching yoga full time. I will have my meditation practice down to a definite everyday not matter what. I will have surrounded myself with amazing people and infinite possibilities. I plan on traveling with my sis Jennifer as much as possible. Doing yoga as much as possible, oh and let’s not forget that I will be writing a book. I hope to have my book out in 2014. If you need inspiration I got plenty to go around.

Jennifer Pastiloff: What has been the toughest decision you have ever made?

Rachel Pastiloff: The toughest decision I ever made choosing to live a life of sobriety and health, simultaneously I moved to the other side of the country from my family, the people I am more in love with then anyone. It was the toughest and the sweetest thing I ever did for myself and my body. I am such a blessed person now to have seen the other side of a the “dark knight” that we all have at least one of in our lives. I am 34 years old now and loving every minute of my life.

Jennifer Pastiloff: Who/what inspires you the most?

Rachel Pastiloff: I am inspired when I see people being kind to my son, not because they have too, but because they want to . I was inspired the other day as I watched a car drive by and offer an umbrella to her mom and baby in the rain. I am inspired when my family and friends live their dreams and happiness in their lives. I inspired by real love and real friendships. I am inspired by myself and who I am today, as I look back on who I was 7 years ago. It is pretty damn close to a miracle.

Jennifer Pastiloff: What do you think your Dharma or you’re your calling is?

Rachel Pastiloff: I believe that my calling is to work with people. I can’t say that it is limited to yoga, but I am here to connect people. I think I am here to inspire people to live their fullest potential. It may be that it happens through my book, my blog, my yoga teaching, or my energy work that I plan on studying soon. I feel as sense of onenes with the world and that is “Where I live!”

Jennifer Pastiloff: What was your “aha” moment that this was what you were meant to do with your life?

Rachel Pastiloff: At the hospital recently with my father in law. He was in severe pain and I just put my hands on his legs. He asked me what I was doing? My reply was energy work. I was focused on sending all the light inside of me to his legs where the pain was. He told me that he felt it very strongly and that it was working. I knew right then that there is a light in me that burns bright, and I am just on the verge of recognizing it.

Jennifer Pastiloff: Who has been your greatest teacher?

Rachel Pastiloff: Oh such an easy one to answer. You, my dear sister have been my greatest teacher. I am so overwhelmed at your dedication to me, your faith in me, and your constant hand that is always there to hold. It has without a doubt brought me to the place I am today.

Jennifer Pastiloff: I love how after my Mexico Retreat, you came home and decided to quit smoking and sign up for a yoga teacher training in Atlanta. Tell us about that.

Rachel Pastiloff: WOW….I came back from Mexico, but not as me; as somebody else. I left the old me back in Xinalani. I realized that smoking did not serve me anymore and with no help at all, I put those smokes down and never looked back and that was over 4 months ago. As nervous as I was to start teacher training it was the ultimate gift I ever gave myself. I am a new woman. One who loves her self. Takes care of herself and, oh yeah can do a handstand. Oh yeah baby!

Jennifer Pastiloff: What would a snapshot of Rachel Pastiloff’s day look like?

Rachel Pastiloff: Are you sure you want an answer to that? Ha.

Today I have been up since 4:30 with Maddock, and he never napped. I spend all day running around trying to keep the children active and happy and away from food as much as possible. I usually don’t ever get a minute to sit down, and yes there are days where I just feel that I have been given more than I can handle, but those days are rare. Every day is a new day, a fresh start. Life is hard having a child with PWS and Autism and another child with a mood disorder and severe ADHD. As long as I am meditating I can stay calm through the storm. It has saved my life, literally.

Jennifer Pastiloff: I remember 3 years ago when Blaise was diagnosed with Prader Willi Syndrome like it was yesterday. What would you say to someone who just found out their child has PWS?

Rachel Pastiloff: Don’t panic, all will be OK. It is the scariest diagnosis to receive but our kids are amazing. My son has accomplished all and more than I ever could have imagined. My heart hurts that he feels hunger, but that will be gone one day as we find a cure. Reach out the PWS community. We are large and strong and a definite family. You will never feel alone. Our kids are unstoppable and capable of climbing the highest mountains with the right guidance.

Jennifer Pastiloff: What would you say to your 16 year old self?

Rachel Pastiloff: I would definitely say to myself that boys are just not that important and to focus more on what matters to me. HA HA. I think really what I would say is have confidence in yourself. Find what fulfills you and fill your heart with love. The most important thing I would tell young me is that you can’t ever fill the void in your heart from the outside in. All good starts within you and doesn’t’ come form the validation of others.

Jennifer Pastiloff: Gratitude is the greatest force In my life. Most of my classes are set to this theme. If you could say thank you right now, who would it be to?

Rachel Pastiloff: I would say thank you to my mom and dad. Although my dad has been gone for almost 35 years he gave me life, and big blue eyes, so thank you. Thank you to my mom for teaching me how to be a woman who can do anything on her own. Thank you to my step-dad Jack, the man who has been with me through my teenage and adult years. The man who is always there if I need him, the man I feel true strength and comfort with. Thank you to my sister for being the the push that I needed in life.

Jennifer Pastiloff: What fulfills you?

Rachel Pastiloff: A good meal fulfills me, especially a good pizza. No, OK. I am fulfilled when I am fully self expressed, and when I am not looking outwardly for confirmation of who I am. When others see me as a calm and together person I feel so fulfilled.

Jennifer Pastiloff: I know these past few years have been really hard for you. What has been the silver lining to come out of those years?

Rachel Pastiloff: Yes, the last few years have been really tough. The silver lining is easy. I live everyday as a new day. I never ever think of myself as broke and I always believe that things can work themselves out. This keeps me going everyday of my life.

Jennifer Pastiloff: What are some words you live by?

Rachel Pastiloff: Words to live by are:

Integrity,

Faith,

Love,

 Kindness.

Jennifer Pastiloff: How do you stay connected to your own bliss and sense of self while dealing with 2 children, one of whom has Special Needs. I know you spend almost every day at a doctor or therapy appointment.

Rachel Pastiloff: I stay connected with my bliss by meditating. I take those few minutes to myself and it is truly blissful. I also take time for myself before where that was a fantasy in the past. I live bliss now, even when I can’t get my private time, I make time for me to write, or read, or meditate, or rest. My body shall be neglected no more.

Jennifer Pastiloff: What are your favorite 3 memories?

Rachel Pastiloff: Driving cross county with you and mom is one of them. The other two are easy. The day Blaise was born and the day Maddock was born. My life changed forever. I am happy to say for the better.

Jennifer Pastiloff: Can you share with us about your yoga/meditation practice?

Rachel Pastiloff: I meditate every day for 15 minutes twice a day and that is what keeps me sane. I take as many yoga classes as I can in a week. When I am home with the kids I start doing yoga in the house all around their chaos. If they are playing I will do a bridge pose and they can play under me. You do what you can. You get creative when you are a mom.

Jennifer Pastiloff: What’s up next for Rachel Pastiloff?

Rachel Pastiloff: Opening my own yoga studio. Traveling as much as possible. Reading at least one book a week, and studying energy healing. I think that is as much as I can fit into my day as possible. 😉

Blaise and Maddock having the giggles.

Rachel and Blaise

Rachel and Maddock when he was a baby

Connect with Rachel on Facebook here. 

Connect with Rachel on Twitter @manifestingmom

Follow her awesome blog 3WordsFor365

Rachel’s family.

 

Maddock chilling out!

Taken in Mexico at the life-changing retreat

taken in Mexico!

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No Comments

  • Reply melkrellMelody July 20, 2012 at 11:16 am

    How Inspiring! So happy for you Rachel. I know you have faced a lot of challenges in your life, and to hear you and see how much you have overcome with grace and perserverence keeps me in check when I start feeling like life isn’t fair. What a family unit you guys are–your Mom must be so beyond words proud and grateful. What an inspiring way to start my day! Love to you and your family!

  • Reply Marina July 20, 2012 at 12:19 pm

    I sure hope the title of the book will be “Freak Flag”!!!! Love it!!

    • Reply Rachel Pastiloff July 20, 2012 at 1:43 pm

      I love it Marina. I think that is an awesome title for a book.

  • Reply Brandi July 20, 2012 at 1:35 pm

    The two of you continue to be an inspiration to me! Xinalani was truly a magical trip, with a magical group of people, and will always hold a very special place in my heart!

    • Reply Rachel Pastiloff July 20, 2012 at 1:45 pm

      Thank you so much Brandi. Mexico was magical and so much more.

  • Reply The Manifestation Q&A Series. Rachel Pastiloff: Writer, Yogi & SuperMom. « Manifestation Station | 3wordsfor365 July 20, 2012 at 4:26 pm

    […] The Manifestation Q&A Series. Rachel Pastiloff: Writer, Yogi & SuperMom. « Manifestation St…. Share this:Like this:LikeBe the first to like this. […]

  • Reply Frank Gjata July 20, 2012 at 6:18 pm

    Beautiful! I really applaud your strength, willingness and courage Rachel. You’re an inspiration! Jen…you’re not so bad yourself;-) I just love these Pastiloff sistas!
    Frank

  • Reply Melissa July 20, 2012 at 8:44 pm

    Rachel, you have always been a shining star, you are just shining brighter than ever now. I have loved you from the second we met and feel more connected to you now than ever. Even though we are far in miles, we have always been walking the same path, side by side. Love you!

  • Reply barbarapotter August 11, 2012 at 5:53 pm

    Wow how did I miss this one. Love it and my girls.

  • Reply Joys of Motherhood | 3wordsfor365 August 20, 2012 at 6:16 am

    […] The Manifestation Q&A Series. Rachel Pastiloff: Writer, Yogi & SuperMom. (manifestationyoga.com) […]

  • Reply Careful When Judging | 3wordsfor365 September 13, 2012 at 5:19 pm

    […] The Manifestation Q&A Series. Rachel Pastiloff: Writer, Yogi & SuperMom. (manifestationyoga.com) Share this:Like this:LikeBe the first to like this. Child, Genetic disorder, health, piece of my mind, Prader Willi Syndrome, Prader–Willi syndrome, PWS, special needs, staring, staring is rude […]

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