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The Broken Glasses

22 Oct

I am always navigating through a crazy maze of trials in my life. Always trying to figure out if the “what is” now is “what it’s supposed to be.”  I constantly examine this concept with myself and especially my children.

Last Tuesday was an especially difficult day. I struggled through the day and my kids weren’t even home from school yet. Once my little ones arrived home things went from hard to climbing Mt. Everest. Blaise my sweet boy who has Prader Willi Syndrome and Autism was in a state of destruction. As dinner approached I asked my sweet angel where his glasses where. Very nonchalantly he responded that they are broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses, broken, twisted and shattered in little pieces. I found myself cracking into those little pieces too. I lost my patience and started yelling, I hate that part of me that comes out when my soul cracks.

I screamed at him, “Why, Why, Why?”

He never answered, he didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue, they are at the surface, they are the like the skin, they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be normal? Why doesn’t my sons brain work?

There it is the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive, tough but working. In reality it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself, I cried for the stress that his syndrome can create in me, but mostly I cried for him. I cried for what I thought was missing. I was quiet after I let it all out, I was quiet all through the days that followed. Something had opened up and I had to finally face it and deal.

I had to accept what is.


Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failures or “lack of’s” in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my ah ha moment that I can accept what is now and trust that things may look different in the future. I have to let go of what I think it is “supposed” to look like in my life, and my kids lives.

As the parent of a special needs child I tend to be on a roller coaster of emotions daily. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgement to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

Put Your Awareness Where It Counts

9 May

For the last 4 years May has been my favorite month. May is a beautiful month, perfect weather here in the the south, and the bugs haven’t come home to roost yet. The sun is mostly shining, our garden has sprouted and the trees are lush and deep green. That is all lovely, but the reason I love May is that it is National Prader Willi Syndrome Awareness month, also recognized in Canada. Over the previous 9 days I have read hundreds of amazing FB status updates all about PWS and the awesome kids we love who have it.

May is a very emotional month for many of us. We spend hours reviewing old photos and videos of our kids as we spread awareness for pws. As the computers roll the old footage out, the bandages are ripped open again. We get to relive the old experiences over and over again. It can be really tough to go through year after year.

The same is true in other areas of our lives. I am getting ready to fly back to California today, of course it is a mad rush to get the house in order before I leave. In cleaning up my bedroom I found a book my mom had just given me with old photos inside. They fell out as I picked up the book. There I was 15 years old in photos that appeared to be candid shots, who knows it could have been staged. Crystal clear blue eyes, perfect skin, that same look on my face that has lived there since I was probably 5 years old. My hair was long, dark brown and pulled up, messy but naturally beautiful. I couldn’t believe how perfectly perfect and beautiful I was, braces and all. Flawless. I never ever once thought that at that age, or any age. There were always flaws, always something not quite right with who I was, inside or out.

20 years have passed since that flawless face existed. Dr. Wayne Dyer talks often about how we are not our bodies. He speaks of how many bodies he has lived in since he has been on this earth. A 2 year olds body, a teenagers body, a middle aged mans body, and so on. The same is true for all of us. I didn’t realize then that I wasn’t that body, I didn’t realize for 20 years that I wasn’t that body, that body is just one of many bodies that I will posess in this life. I maintain this truth as I struggle with a diagnosis of hypothyroidism, fatigue and weight gain.

What we put awareness to becomes real!

A week ago I was back at the doctor, just routine blood work. They made me get on the scale, I normally refuse. I got on and OMG. I was up another 5lbs. I was waiting for my heart to start racing, my breath to speed up and my sadness to settle into my skin. I waited. I waited some more and then, nothing. It never came. I just sat with it. I didn’t put my awareness to what was wrong with me, or the lie that my body represents who I am.

I read a quote the other day that said something like this:

If you knew how important you were to the world, you wouldn’t be unkind to yourself anymore. (That is not the exact quote, I couldn’t find it)

I realized that what we put our awareness on becomes that which fills our minds and takes up space in our souls. I am not interested in the self bashing of my soul anymore. The nasties that have lived rent free in my head have been evicted.

I realized how important I am in this world.

In honor of PWS awareness I also put this out there as food for thought. We often have enormous expectations of our children. As parents of PWS children we are constantly striving to have our kids fit in intellectually and physically with other children. In our society as a whole we put huge stressors on our kids. Our awareness is put on all the things that we think they should or shouldn’t be doing in life.


Spend some time this weekend paying attention to all the simple little blessings your children provide. What does your child’s hair look like when the wind blows through it? Does the light shine on your childs eyes and make them change color? Can the laugh of your little sidekick egnite laughter deep inside? These are the things we should put our awareness on. When all is said and done all the other things won’t matter.



There’s Never a “Right” Time. | The Manifest-Station

23 Apr

This is one of the most magnificent pieces my sister has written. It is a must read.


There’s Never a “Right” Time. | The Manifest-Station.


What to Learn from a 6 Year Old Who Has Autism « Positively Positive

28 Mar

Choosing something different. Choosing to shift, be different, move on, move forward, or live something new.

You don’t need to ask permission or wait for the okay. You just need to say the words. I’m all done now. I choose something different.

via What to Learn from a 6 Year Old Who Has Autism « Positively Positive.

19 Mar

A must read. Another amazing and truthful gut wrenching essay from my sister.

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