Advertisements
Tag Archives: MOM
Quote

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.

Advertisements

I AM BLESSED

9 Jun

Saturday is Karate day at our house. Blaise get’s all suited up and off we go for a half an hour of watching him kick butt. today was something very special. Blaise was on fire, he performed like a champ.

He never ceases to surprise me with what he is able to do. He was following directions, jumping, running, laughing, and full of pride. Oh my god, my heart was overflowing. I felt so much joy for him. He felt pride for himself, and that is all I want for him. I want both my children to be proud of themselves. I am leading by example because that is how I feel about myself now, PROUD!

The luck really comes into play in a rather simple way. I am lucky to be the parent of a special needs child.. I am lucky to reveal in all the little miracles that happen everyday. I am lucky is what came to me as I listened to the wind today.

I spent the rest of the afternoon just sitting with my family. I watched as my children rode their bikes, swam in the in the little pool and enjoyed the sunshine. We laughed and just enjoyed the company. It was what I call a perfect day. I take these days very seriously. Life can be way to serious around here most of the time. Today was all about relaxing and enjoying the present moment.

I was well aware that my meditation this morning helped my mood, and I loved every minute of it. I think sometimes we are so caught up in the media world, the medical world, or the stressed out parent world to stop and enjoy the moment.

Today I did. It was AWESOME.

Everyday Like Today

28 May

I wish everyday was like today, period!!!

It was a perfect day. I got to spend the entire day outside with my kids and watch them swim in the mini pool. I watched my husband cook on the grill (yay for me no cooking at all), I had some wonderful conversations with my in-laws and I got to enjoy a beautiful glass of Pinot noir. Dare I ask what more could there be? Well okay, if my sister and mom and dad were here it would have been the most PERFECT of days, close enough though.

My in-laws bought a mini pool, it is big enough for me to swim in, the water is about 3 feet deep. I found myself just floating and staring up at the sky. I watched the most beautiful clouds swirl above my head, and I was so relaxed. I thought, “why can’t everyday be like today?” So much peace, no fighting, everybody doing their own thing but feeling very connected, and so much life all around us. I floated in the pool like that for quite some time, listening to the silence, or how all the sounds seem so much slower and quieter. I felt my body as it appeared to weigh almost nothing, all the heaviness just drifted away. I wasn’t worried about how I looked in my bathing suit, or did I remember to pay this bill, or do that thing, all I thought about was just drifting slowly and enjoying the moment as I relished the quiet outside and inside.

It was wonderful eating a great meal and watching my kids play and play and laugh all day long. I felt no pressure or stress. My entire family felt very relaxed and at ease. This is why I wish everyday was like today.

I spoke to my sister on the phone today and I told her that I finally cemented in my mind what SUCCESS is to me. To me success is peace. Of course there is a small idea of money in there, but it really is only to the point; where there is no stress to pay a bill or provide for my children. I truly define success as peacefulness in my life. Freedom from constant arguing, complaining, worrying about money, and let’s not forget the forever screaming. Success to me means having a job that I truly love and working is a “get to” not a “have to.” I will be successful when I get paid to do what I love and my family is functioning harmoniously. This is the definition I have finally come to claim in my mind.

Today felt very much like what I see in my head. Everybody was calm, happy, living in the present moment and enjoying all the blessings that life has bestowed upon us.

I feel extremely grateful to be alive today. I am still on an incredible journey of self-awareness and learning to live my best life, and I am so enjoying every moment of it.

We are Special

26 May

I received a message yesterday from my sister to call her right away. I was physically and emotionally exhausted but I called. As I listened to her on the other end of the line say, “My friend has a friend with a 5 week old baby just diagnosed with Prader Willi Syndrome, can you call her please?” Normally I would have hung up  the phone and called her straight away, however I live by the new principle of I CAN’T GIVE TO YOU WHAT I DON’T HAVE!  So I told my sister to give me 2 hours and that I would call her. I did call and left a message. Blaise then called her a few times too, haha!

We finally connected this morning and it was beautiful. It felt really amazing and interesting to be the one comforting. I sat and thought to myself what would I want to hear if my child was newly diagnosed? What would I say to me 3 years ago? What are the most important things to really get across?

So I started with the most obvious. Please allow yourself time to grieve. There is a grieving process and we often overlook it and the role it plays in the healing process. Then it was the obvious things to be HONEST. Here is the truth my son is amazing, Prader Willi Syndrome sucks but we are a pretty normal family, living a pretty normal life. I also found myself saying something that nobody said to me in those first few days. It makes such sense to me. FIND WHAT WORKS FOR YOUR FAMILY AND DO THAT! As long as your child is healthy, their labs are good and they are growing then you just do what you need to do to make your family work. I love how natural that felt. I love how it releases you from so much guilt over doing things the “right” way or the “wrong” way.

I shared honestly with this beautiful woman that there will be down days, but there will be so many up days. So many days filled with joyl

The most important things I found myself saying to her was very real and true to my heart. I told her the following:

AS THE PARENT OF A CHILD WITH SPECIAL NEEDS YOU LEARN TO APPRECIATE EVERYTHING even the smallest things mean so much. This not only applies to your child with special needs, but all your children. You take nothing for granted and learn to see the beauty in all the things that your kids do.

It all felt so natural coming out of my mouth,it all felt so real. When my sweet angel was diagnosed I was blessed to talk with 2 amazing people in that first day who have family with PWS. It was a life saver for me, it was my life raft because I was drowning in sadness.

Now I tell you this: 3 years later PWS is just a part of my life, it is my “normal.” I LOVE MY SON WITH EVERY OUNCE OF MY BEING. I don’t sit around and wish he didn’t have PWS I don’t him any other way. He is blossoming into such an amazing young man, and he and his brother are growing up to such amazing young men. I am blessed. My child says please and thank you, he tells me he loves me, and he smiles all day long. I don’t care what that genetic test says, he is perfect in my eyes.

Yes, I have my Broken Heart Syndrome moments, but they are getting less and less these days. As I am on my spiritual journey and deepening my love for myself and practicing loving myself, it is easier to accept all others around me. I love my child just the way he is PWS, Autism and all the rest of the wacky things that his body decided to give him.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

Time for Healing

23 May

I believe there are some people who manage the stress of life and never let it get to a dangerous level. I believe there are people who don’t let stress effect them at all, and then there are the people who push it down and down until eventually they explode or sometimes it feels like an implosion.

I was told yesterday that I am a caretaker. I was told that being the mother of two young children is challenging enough, then you add a medical condition or special needs in the mix and it’s a whole new bag of worms. I was telling this woman that I am tired, depleted, feeling as if I have cracked and can’t snap out of it. She told me that was common for caretakers, that we are often tired, overwhelmed, and drained of energy.

I don’t mind being a caretaker, in fact it is quite an honor, but I have decided to not make apologies anymore. I am taking the time to heal. I DESERVE IT. I need to heal my soul, my spirit, and my physical body.

Yoga and meditation have been a life saver for me. When I am in the yoga studio the whole entire world melts away. All the stress of my life just disappears and I am totally present in doing the practice. When I am meditating it is my time, my time to heal, my time to go inward and get what I need.

I realize that I struggle with that. I struggle with just merely saying, I am tired I need rest. I am tired I don’t want to cook tonight, I am tired I want to sit quietly alone, or I am tired and I just don’t have any energy to hug or be there for you.

It’s ok. Remember we can’t give from what we don’t have.

I don’t know if it’s my age, or just my commitment to my life, or renewed commitment to myself, but I am deep in the healing process. I am more alive than I have ever been before while simultaneously going to places that I have shut down or never even opened before.

As my yoga teacher training progresses I am not only pushing my body to new physical limits but my mind as well. There is so much more to yoga than just the asana practice. For me it is a way of living. How can I best serve my spirit, my body, and those around me?This is the reality I live in nowadays. I am in love with it all.

I do believe that the extreme fatigue I am feeling is a by product of an extremely deep detoxification of the soul, and eventually purification.

I believe something very powerful happened to me recently. I don’t want to call it a nervous breakdown, but more like a “nervous breakthrough!” Something very powerful just clicked inside me. I just knew it right at that moment that I needed to heal, slow down, and move forward. It was an earth moving sensation and I haven’t stopped to look back. I am deserving, I am deserving, I am deserving. This is my mantra currently. It is helping me deal with the guilt of asking for what I should always have readily available, time to love and nourish myself.

So I will end this post tonight with all my fellow caretakers in mind. Before you all go to bed tonight say the mantra to yourself at least 3 times.

I AM DESERVING, I AM DESERVING, I AM DESERVING.

Angels in Heaven

22 May

I have convinced myself that every time somebody I love passes they become angels. I created this idea in my head at the ripe old age of 5, after the passing of my beloved father. I not only believed he was my angel but I believed that he was the brightest star in the sky at night. There have been hundreds of nights over the last almost 30 years where I have looked up at night, seen that star and thought to myself, “hi dad, I miss you and thanks for looking out for me.”

The thought sounds nice right, it is just one way I chose to learn to deal with grief. When my beloved Gunner, our first dog, was laid to rest I told my children now they had another angel in heaven looking down on them. This they understand and once again I find comfort in knowing I have a whole bunch of amazing people on my side, up there.

All that being said it brings little comfort as the news comes of another Prader Willi Syndrome child who lost their life from the syndrome. Dear sweet Lexus, who I never met, but none the less feel a connection with. Only 17 years old and a week before graduation Lexus has made her way to heaven. I know that she will be another angel looking down and protecting us, but it still doesn’t feel fair.

My heart aches for her family, she was the first thing I thought of this morning as I opened my eyes. She was the last thing I thought of last night as I closed my eyes. It is a very real wake up call to all PWS families. Not only is the thought of losing a child beyond terrifying, but our kids have PWS, it could be one of our kids next. That hits really close to home.

I had an incident this week with Blaise ingesting medication, even with the child safety lock on he managed to get the lid off and drink the bottle. My heart stopped and it hit me like a sledge hammer to the head. My child could DIE because he is so hungry he would drink medicine because it tastes good.

I don’t want to sit here and slam PWS and say how much I hate it and what it does to all those who suffer from it, that is a given. I want to say this. WE MUST FIND A CURE, A TREATMENT, A PLAN OF ACTION TO SAVE OUR KIDS. I am committed in every way that I can be to letting Blaise reach his full potential and live a long and full life. I want this for all kids and adults with PWS. They all deserve a chance.

The thought of this syndrome taking my son’s life is beyond my realm of thought. I will never give up the hope of a better future for him.

If there ever was a cause that needed your support I believe it is helping to find a cure for PWS. How can we do this? We can through research. Please consider taking the time to learn more and even consider making a small donation.

please visit

www.fpwr.org

www.pwsausa.org

I am hosting a One Small Step walk here in Georgia for my son Blaise.

Come and join us and help us find a cure.

Maria Lin: 6 Things You Don’t Know About a Special Needs Parent

10 Mar

Yesterday as I scrolled through Facebook I came across an article posted by numerous friends.

The title struck me, “6 Things You Don’t Know about a Special Needs Parent.”

I must read this I am a Special Needs Parent. I opened the article up immediately, wow!


This article was beautiful and spoke to me, and for me.  I am not the only one. I lost count at how many times the article posted  online.

I read the article and it hit me immediately. I tapped into exactly why this article was so important, why it was touching so many lives. It goes back to what the amazing storyteller and researcher Brene Brown writes in her books and shares in her videos.

We all need to feel connected, we all want a sense of belonging.

This article does all that. For the millions of moms and dads who raise special needs kids it is a reminder that we are not alone. Then the icing on the cake is the connection that you feel to the author, and even greater the millions of others who feel as you do.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs.

via Maria Lin: 6 Things You Don’t Know About a Special Needs Parent.

I read this brilliant article and immediately wanted to know who was this amazing woman, I had to find out. I immediately tracked her down on twitter and beyond. I found her private email and sent her a letter straight away. I want to be friends with this poetic writer of special needs truths, this everyday normal mom just like me.

Who is Maria Lin?

Maria Lin is the editor in chief of LearnVest, the preeminent website for women and their money, where she writes about money, time and human behaviors. She was the co-founder of cult lifestyle site UrbanDaddy, and has written for publications such asReal SimpleNew York magazine, Time Out New York, and has appeared in The Washington PostABC NewsFox Business NewsThe Wall Street Journal, and theBBC. She graduated from Swarthmore College and Berkeley Law School, and attended the Columbia Graduate School of Journalism. She lives in Manhattan with her son. www.marialin.com

She blew me away. She wrote back. She was kind and humble. I asked if I could share her blog and she said, “YES!” I am so thrilled.

If you are one of the few people who hasn’t read this article please take the time to do so now.

Parents of special needs children will rejoice that you are not alone.

Even if you don’t have a child with special needs, this article will open your eyes and your hearts to our everyday struggles.

Thank you so much Maria Lin. You have made so many families feel a sense of connection and belonging. I am so very grateful for that!

%d bloggers like this: