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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