Welcome to our Island....
(Original post) February 13, 2013 at 11:16pm
Let me tell you a little story: I made " POMC Island" sometime in 2012 But we were 'living' on it for quite a while before it had a name....
Nathaniel was diagnosed May of 2010..
The Dr gave me case studies and told me to take notes as there was NO support group, and very little was known about this.... as you can imagine it was very hard to comprehend. A few weeks later both my younger sister and then my Dad died suddenly, a week apart. Needless to say I was having a very low, very dark and painful time and of course I was still trying to come to grips with having a child with a rare disorder and not being able to even find anyone else with Pro-opiomelanocortin Deficiency even though the studies I had read, the studies I had right there in my hands told me that there are other families out there ...
I have not been able to contact them...
And so I thought ''Great! here I am, all alone on a desert island....NO ONE to help NO ONE that understands....ALONE".
*Fume~~
and then...
as it will happen and it often does if you open yourself
someone said something that helped me to turn it around, it helped me to find the good in all this vast sea of BAD that I was facing...... He said ''I wish I could live on my own Island"
well at first I laughed it off but then I thought about it...after all who doesn't want to live on their own Island...sun, sand, surf...and Lo' and Behold here I was having landed on my very own island.
True it wasn't much but I took the thought and I dug deep, I planted it and I started to make it grow and I kept holding on to the positive side of it all...
and then...
I realized that we were NOT all alone... we are in fact surrounded by an "Ocean of friends"....friends that have been there for us, friends that we have met face to face and friends that we have yet to meet friends that want to know us, friends that help us and...
we are thankful...
and grateful...
and BLESSED
and then...
I started to see other Islands,again and again I have met other families...not with POMC, but all with rare disorders...each different, each alone on their own islands all of them...part of my family...an archipelago. Each of us dealing with the various storms that hit us,and also enjoying the sun and surf when we can.
Each of us here for each other.....
THIS IS WHAT POMC ISLAND IS.
P.S. I am so happy to add to this post that the past few years we have actually been contacted by OTHER families that are dealing with POMC also!!! sadly they are in Europe! :(
we are still the only one in the USA. but I keep searching the horizon in the hope that someday we may get to physically meet other families.
P.P.S...Oh and what a THRILL to be contacted again and again! there is a family in Hawaii! Yes, I know still too far to get to meet them! but we are no longer alone in the USA!
P.P.P.S...And today I find myself coming back to this blog to report another contact!! A new family in the states!! I hope to meet them someday! What a funny thing though, Nate is still the only boy we know.
P.P.P.P.S....We have been connected with the people that are involved with the clinical trials working on a PARTIAL cure for one of the big issues of POMC!! AND more people with POMC!!
sadly some of the families are not even online!! ( I cannot fathom?!?!?!) but there is a teenage BOY among them. Yes, I know we have a dad with POMC but he isn't online either, and English is not his first language, I'm not even sure he speaks English now that I think of it...but we are also now including some LEPR families because they too deal with many similar issues...hummm...that should be another topic for a blog HUH?
P.P.P.P.P.S.
I think I have updated this enough times..HAHAHA but I am so happy to have made such good friends and connections on our 'ISLAND'!!! we have TEN!! yes, 10 families!!!! <3 ( no, we haven't met any YET) but some of the families in Europe have met each other several times!!! YES I am so VERY JEALOUS!!!
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