Rambling in my mind

     Island life

 I really don’t know how much I truly have to offer someone, how much comfort can a struggling, broken, single mother really give?!?!?
But I keep sharing our journey and I keep writing because I must.



But you see we live on an island. It is called a rare genetic disorder, it is called a genetic mutation, it is called an orphan disease because there are less than 50 in the whole world. It is dangerous. It is my life.  I call it POMC Island.

 I landed here in 2010 May 6 … flat on my face. At first I was numb I did not feel anything I did not think about what this all really meant. I did not research anything I did very little reading. But then the storms came… Oh how the storms ravaged, and for oh so long I could only cry and mourn. Then ever so slowly and cautiously I reached out…
I went thru the stages of loss and grief of denial and acceptance. It was not easy. And I still have all of these feelings and more. I have joined all sort of support group and organization trying to make a match a fit someone that when I speak about POMC Island they will say. “Yes. I know.” Or  “Me too”.  But I was not fully content with joining others, oh indeed that is what I wanted…to join in and be a part of something already made/ established. I was not fully content it was not enough! I wanted to know I was not really REALLY alone I wanted a true FIT…And so I created POMC Island and I used this idea of being dropped on a deserted island to compare how I felt when I learned my son had this rare disorder and there was no one around to share with or ask questions of not even the doctors knew anything! I dug and I searched and I asked questions and I put myself ‘out there’. There is not a day that goes by that my heart is not stabbed deeply with pain for my son. He is my joy and I want him to have the moon.
I was facing tsunami after tsunami and I knew that I could… because I must.
And I have.
In the special needs world there are several good stories/poems that we use to ‘explain’ our feeling to family or friends. One such story is called “Holland” well I won’t go into it just here. Suffice to say it is a good enough story and many like it.   But the reason I speak of someone else’s story now is because I too have written of my efforts and because  I have put my story… my life on POMC Island ‘out there’ we too have indeed found someone else with this rare disorder.FINALLY
  And they actually live in Holland. Oh, how can that story that comforting explanation really help this new family?? It just does not seem to be a good story ‘fit’ to me. Truthfully when I put myself in that position of someone trying to comfort me with a story about Holland and how this someone does not want to be where they are...well, I was crushed, confused and offended. I don’t see our life as a vacation/trip but more of a whirlwind coming and swooping me up off my feet and landing me face first on a deserted island.
 LOST AND ALONE.
 I have been thinking and thinking of how or what if anything I could say that would bring comfort? I don’t think I have anything. I can only tell of how I feel on this island. It is not a country that others have heard of it is not a place anyone plans on visiting. There are no exotic sites to see. It is focusing on what health issues come our way and how to deal with them.
I don’t know if I what I say or do brings and help or comfort or enlightenment to anyone. But I try. I really do. I worry about other families and how they may be feeling over-whelmed much like I am. I want to be a support I want to be a port in the storm. Please help me, SHARE our story! Share our page!  If you or your family is dealing with a rare genetic disorder or a rare disease my story may ring true in your ears and if you have never met anyone like us thank you for reading this far. I cannot change what has happened to land us on this island I can only make the best of it and I can only share my experience so that others may learn and have comfort too. It is not easy but we are blessed to be surrounded by 'An Ocean of Friends' and we have other neighboring Islands that have proven to be valuable support.