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.

Swinging

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.

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

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.

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