Wednesday, December 8, 2010

To All My Sisters Out There

I wanted to dedicate this entry to a very special "sister" out there. I wanted to remind all of my sisters out there how amazing you are.

I have always been fascinated by how we see ourselves versus how others see us.

I wanted to let you all know that I "see" you for the amazing and phenomenal women that you are. I see the fearless champion that you are for your children and all of your loved ones. I see the light that shines in you that at times you can't see.

How could we ever feel lonely when we are so loved and so admired?

Well, I admire all of you. I admire your strength for never giving up and never giving in. I see your passion to make a difference and to make change. I see the love that you show all the new "sisters who arrive into our club. Sure, none of us wanted to be in this club, but we wouldn't change it for the world.

I sit and wonder do you know how much I admire you all? Do you know how I look to you and say, "she is amazing and I have so much to learn from her?" You all are a force to be reckoned with! I have learned so many things from all my sisters, each has something beautiful to teach me. All my sisters have had such a profound impact on my life, you all have touched my soul. I have learned patience and persistence to keep myself grounded. You have taught me tolerance and action to make the change I want in the world. Most of all you have all taught me how to love and accept, the two most important things I need to have a life filled with hope and beauty.

So to all my sisters out there during this holiday time when we are to be thankful, I want to say this to you. I am thankful for you. I am grateful for you. You are the warriors and the champions. Please remember this in your quiet moments when you feel like you can't see yourself. Remember that we all see you, all of your sisters see you. You are a gift so precious. You were chosen.

Tuesday, November 9, 2010

Staying Strong in Tough Times

I look around everyday and see people struggling in these tough times. As I look as these people I see they fall into two very different groups. There are those that always keep their heads up and keep moving forward, and there are those that are eaten alive by their conditions. I don't want to fall into the latter group. Everyday I wake up and continue to remind myself that we are going to make it, we are going to see the other side. I have to be strong. I learned as a young child that just because I was a woman doesn't mean that I can't be strong, that I can't lead my family to success. I try everyday to possess the type of strength that I want my children to possess. I want my children to always feel safe and secure, even if the world is falling in around us. I am blessed to have family members who teach this to me all the time. I believe that if I keep my head up and keep smiling that I can overcome whatever challenges arise in my life. I know these times are hard, but I refuse to let it take me down. I am committed to staying calm and staying focused. I will take it day by day, hour by hour, and minute by minute. If I get to far ahead of myself I know disaster is waiting on the other side. I continually find strength in myself that I never knew existed. I have decided to be the rock in my family. I will be the one to hold us up and push us through, and I will do so with a smile on my face. How will I do this? I will live in a constant state of gratitude. I am grateful, I am grateful, I am grateful. I am grateful for all that I have in my life. What are you grateful for today?

Sunday, October 10, 2010

The Playground

My Breakthrough at the Playground

My life is fairly routine, in fact almost ritualistic. The last seven days are part in parcel of what a typical week looks like in my life. I did the same thing every night for the last seven days, exactly the same thing. There was one big difference about these last seven days. The "same thing" we did every night, was a different something than usual. I spent every night this week at the playground with my two amazing boys. This was not a special playground, in fact it was pretty ordinary. It wasn't the playground that was so special, it was the moments we had inside those metal frames and plastic slides. I had some of the best moments of my life in the past week with my children at this playground, our playground.

You have to understand that I have spent the last two years, at least, trying to get Blaise to enjoy the playground. Nothing I did made a difference, he really could have cared less. Well times have certainly changed and his world is the playground, or as he calls it, "the grey ground!" I love hearing him say that word in all its mixed up glory. When he looks at me with those big beautiful blue eyes and asks me to go play with him, I just melt.

It is not just how much he loves to play there, it is that he is actually playing. How could it get better than this? He not only wants to play, but he wants to play with his brother. They run and laugh and chase each other up and down the slide. This is all that I could have ever asked for in life. These are things I think way to many of you take for granted. Please no offense to all you moms out there with "typically" developing children. I just know that as the mom of a child with special needs I rejoice in all that my children do, even the smallest and simplest of things. Every situation allows me the opportunity to learn, grow and find joy. I have never been more aware of how much I have to be thankful for in this life.


I had one of those spiritual experiences tonight, the kind that only happens a few times in your life. I was swinging on the swings with my kids. Everything about this night was perfect. The sky was perfectly blue and clear, there was a light breeze blowing and the sun was just about to set. I started swinging and I was going really fast and really high in no time. I thought for a second that I might go over the top, it made my heart race. All of a sudden I forgot where I was, or really who I was. I was zipping through the air I lost all feeling of sadness or stress, it was as if all the heaviness of my life just went away. I was so taken over by just being in that moment. I couldn't hear anything except my breath. It was the most peaceful I have been in the last decade, at least. I love that feeling, I want to recreate that feeling in my life.

This journey of manifestation that I have embarked on has not been easy. I still struggle everyday, but I am making great progress. I have never been more aware of my mind, my thoughts, my actions and so on. I felt joy again this last week. I really am loving finding my joy.

Monday, October 4, 2010

Learning to Love Yourself

Today was not a great day. I am running on very few hours of sleep and that began the downward spiral. I am battling my old demons today. I spent hours today focusing on my outward appearance, my skin, my weight, and so on and so on. It is such a burden and so insignificant. My god I have so many more important things to worry about. This brings me to my final realization tonight. If I focus on all the things that I don't like about myself than I don't have to think about what is really going on in my life. If I focus on how sad I am that I gained 5 lbs then I don't have to think about my son's medical problems. So I avoid. The cycle goes on and on. Yes, I am the type of person who is vocal about the events in my life. I will accept them and try and move on. I also know that I am human being. Sometimes it can be such a daunting task having so much on your plate, so I avoid. I avoid by obsessing on my appearance and all the other things that I am lacking. I believe it is also a self fulfilling prophecy. If I gain weight, if I don't pay a bill on time, if I turn in a letter to my son's school late, then I am a failure. I suppose this is a conversation I made up about myself years ago. So the more I look for something to feel bad about the more I get what I want. I get to validate my conversation about "who I am!"

I was feeling so low today and so I practiced loving myself. There is no better time to start loving yourself then when you are at the bottom. Everytime I walked past the mirror I would get sad. I would walk away and come back and say, "You are beautiful." I did this about 10 times today. I realized that it is so strange that practicing self love is such a struggle. I should wake up everyday and think I am beautiful, I am a wonderful mom, I am a great friend, and I deserve love. These things shouldn't be such a struggle. I am dedicated more than ever to make it through this.

I am not just doing this for myself, although I am the driving force. I am also doing this for my children. I want to teach them through action that they are deserving of love, and perfect the way they are. I want to raise them to know that they are loved. I want them to know that they are deserving of all that life has to offer. This can't just be said in words, it must be put into practice daily. They have to see me setting an example for them. This is the best gift I could ever give to myself and my children.

I read this quote the other day. I found it beautiful so I decided to share it with all of you.

"Loving everything about yourself—even the parts you consider unacceptable—is an act of personal power. It is the beginning of healing."

—Dr. Christiane Northrup

Friday, October 1, 2010

There is no manual for this!

When you are pregnant there are a million books to read to help guide you through those 9 months. Almost everybody reads, "What to Expect When Your Expecting." Then after the first year you run out and get more books. There are so many to choose from, the list is endless. There is however one book that is missing. It is the book that tells you how to navigate being a mom of a child who is in constant pain. Sure there are a plethora of books on how to raise a child with special needs, but what about the child who pains physically and emotionally. That manual doesn't exist.

I held Blaise last night close in my arms. Normally he will go right to sleep, but last night he was in pain. He sobbed uncontrollably wanting something to soothe his tummy. He cried for more drink, more vitamin, or just one more almond. I mean are we serious that I actually have to think about giving him one more almond, just one. Yes, this is his reality. We are navigating life pretty well, I think he and I are a great team. Together we do a pretty good job of handling all of the little crisis that arise. But....yes, there is always a but, it is so hard. My heart hurt so bad last night. I mean the deepest hurt that you could imagine, it stung. I want to take his pain away, I want to trade his pain in and keep it for my own.

I sat and looked into those big beautiful eyes of his and watched the tears pouring down his cheeks. He wrapped his arms around me and held on so tight. I know in his mind he believes that I can take all of his hurt away. Most of the time I can make the boo boo disappear and make the hurt go away. The times that I can't it tears me to pieces. Intellectually I know that if I am strong for him he sees my strength and rises up to meet me. Emotionally I am running scared.

I know that all children with special needs can be a challenge, but Prader-Willi Syndrome is a beast all unto its own. At times I feel drained from knowing that his life is literally in my hands. We aren't supposed to say that out loud, we aren't supposed to let people know how scared we are. Well, I am scared. I know that I can handle it and I know that I am the perfect mom for Blaise, but this doesn't' mean that I can't be human.

Thank God For My Extended PWS Family!

As we approach the holidays I am grateful for many things. I am grateful that Blaise was diagnosed last year. I am grateful that he is getting the treatment he needs to grow and get stronger. I am especially grateful for my PWS family. I truly don't know what I would do without all of these amazing people in my life. Everybody in our little community is like a dear old friend, we all live the same strange experience that is PWS. I am grateful to have such a dedicated group of people who all are committed to our loved ones with PWS, it inspires me everyday to go on.

A dear friend once told me that life is full of valleys and peaks. She told me that in the beginning you will spend most of your time in the valley, but as time goes on you are there less and less. It is ok to say that today I am in a valley, but I know that I will rise out of this once again. I will leave you with this poem that this same dear friend shared with me. I will read it all day to remind myself why I am here.

Welcome To Holland

Thursday, September 30, 2010

Slow Going

I said I would be honest about my journey of transformation. I knew this would not be easy.

The last 2 days were really hard!

I can't believe how hard the last two days have been. I caught myself on numerous occasions thinking about all the things I am not doing right. Really I spend so much time thinking about what I am just not doing. I did practice redirecting my negative thoughts with something constructive. I found that it did take away some of the anxiety. This is not easy. My sister always reminds me that the brain takes the path of least resistance. For me it is to always beat myself up, or to find something to feel guilty about. In fact I believe this challenge may just be my biggest hurdle. If I had a nickel for every time I started a sentence with, "I feel so bad" I would be a millionaire. This is very sad. That is why I have started this journey, that is why I committed to making a change. I want to be free of these rules I have set for myself.

Learning a new trick!

I am preparing to leave on a trip home at the end of October. I have not visited my family and friends in over six years. I am so excited and yet feel a tremendous amount of anxiety over the journey. I realized that I have spent the last two weeks thinking of how much weight I can lose before I go. I guess old habits die hard. I still fall so quickly into the same routine of needing to feel perfect when I see people from my past. I believe at some point in my life I made the connection that if I look perfect than others will be believe that I am doing great. There is nobody that I am visiting on this trip who cares at all what I look like, and yet I still feel a desire to fix myself. I spent some alone time yesterday looking inward and thinking about this behavior and what it represents. It is the cycle of feeling like a failure, or feeling not good enough. This is exactly what this journey is all about. I am determined to break this wall down. I already feel so uncomfortable. So I decided I am going to go home looking the way I look and to accept that. I will spent the next three weeks acknowledging to myself everyday that I am beautiful. In essence I will fake it till I make it. I am going to look in the mirror and find one thing that I find beautiful in myself everyday. I will not turn away when I am undressed in front of the mirror. I am going to allow myself to feel uncomfortable so I can make it through this. This has already become harder than I thought.

Tuesday, September 28, 2010

Not doing Enough

I never feel like I am doing enough!

I spent the last weekend at an amazing picnic with some extraordinary people. As I sat and talked with my fellow moms I heard the same conversation, "I feel like I am not doing enough..." I was one of those people speaking those words out loud. How could this be? Why is it that we all feel this way? The gathering we had was for families who have children with Prader-Willi Syndrome.PWS is a rare genetic disorder that my oldest son Blaise suffers from. When you are a parent of a child with PWS it consumes your life. If there was ever a group of people who do more than enough for their kids, it is this group. So how could it be that we all feel that we are not enough and our caring is not enough?

The media tells us so!

Every time we turn on the t.v. or read a magazine we are bombarded with images of what a perfect mom looks like. I spend so many hours thinking about what I am not doing that other moms are doing. We are programmed to think that we are to keep a neat house, our kids clean and we are never supposed to be tired. This is a bunch of you know what. We aren't perfect, or at least I am not. I am fed up with not feeling that my love, my nurturing and my dedication isn't enough. I am a great mom and yes, my house is often in disarray, my kids have dirty faces at times, and I am tired all the time. No, I don't cart my kids off to a million activities everyday and we don't ban our kids from watching t.v. Does this mean that I am not a good mother? Of course not, and I finally believe it. My kids are so loved and happy. I fight the urge everyday to compare myself to other moms, it is so defeating. My life is MY LIFE and not theirs. My kids are different, my husband is different, and I am different. How can we all be the same kind of mom with all the variables involved? So I make this promise to myself. I will not allow myself to say anything negative about my mothering for the next 7 days. I will be totally honest about whether or not I am keeping my word. I know this seems like an easy task, but let me tell you it is not. I will replace my negative self deprecating thoughts with something positive. Every time I think something bad I will tell myself one good thing that I did for my kids today. Will you join me and do the same? I am extremely curious to see how different I feel after the next seven days.

Here I Go

I can't believe that my 33rd birthday is right around the corner. Now, I don't mind being 33, but I am stunned at how fast the last 33 years have gone by. I am married now with two beautiful boys. I live in a beautiful home and well, I guess you could say have settled nicely into domestication. For those of you who know me you might have to think twice about me being a stay at home mom living in suburbia. I was always the wild child. I traded in my dancing shoes for sandals, and my sexy clothes for nursing bras. Isn't this what happens to most moms?

Where does that wild child go when we become a mom?

I woke up one morning recently and realized that I didn't know who I was anymore. Sure I am a wife and a mother, and I love being those things, but where am I? I spend every waking moment thinking about what needs to be done for my family, what task needs to be accomplished for my kids, and what to cook for dinner? If you ask me how much time I spend thinking about myself I would say NONE! So slowly but surely I have become lost in the abyss.

Here I Go!

So off I go. Yes, I am the manifesting mommy. Starting with today I am creating my new life. It sounds so cliched but who cares. I am just one of millions of women feeling the same emptiness inside, the same feeling of being overwhelmed, and the same feeling of longing for some part of herself back. I have made a promise to myself to make a change. I decided if I was going to be a great mom then I need to be a great me. This will be a honest and real account of my journey. I promise you it won't be pretty. I am going to do things that are uncomfortable and difficult. I am going to tear down all the walls that continually get in my way. If you stick with me on this journey you will get a glimpse of what real life is like for a young mommy today.

What are you manifesting today?