Genetically alone

I got a message yesterday that confirmed something I have been feeling for awhile.  A lady from Ohio got my name off an inactive facebook group and wanted to know if I or anyone I knew has Miyoshi Myopathy.  I was shocked and kind of excited.  This was the first person I have ever had any contact with that has the same disability as me.


Her husband had just been diagnosed and she was looking for information.  I have finally found someone who is experiencing the same thing as me.  I found one group on facebook, but as I mentioned, no one was actively involved in it.  It's pretty rare, but type 2B is even more rare.  I even found out this past fall that my Doctor ... a world renowned specialist ... only has one patient with type 2B ... that would be me.

This may mean nothing to you, but to me it would feel so good having someone to talk with .. or even read something about someone who understands.  I am so blessed with people in my life who understand my limitations ... Matthew, Julia, Denielle, Ryan, Nancy, my parents, but sometimes it would be nice to not feel so alone in this.  I'm not sitting here feeling sorry for myself, but sometimes I feel scared.  Feels like too often I'm finding something new I can't do anymore.  Always assessing everything to see if my children and I will be safe.  Not being able to go places because there is one pesky little step.  Watching other people experience things with my children.  There are certainly lots of people who experience far worse things that I have, but this is my story and my experience. 

I guess I could feel "genetically alone" ... or perhaps I'm just so unique.  So unique in the way God knit me inside my Mother.  When he created me he must have thought ... I have a special plan for this girl.  So unique.  Hmmm.  I'm pretty ordinary to most people ... well, except the limp and the cane.  That gets a lot of stares.  I do have different coloured eyes .. that's unique.  Well, I'm not going to figure it all out tonight.  I just have to hold to the belief that I am the way God wants me to be.

Perhaps I should be that first person to post something on youtube or share my story.  According to this lady there must be at least 2 other people out there feeling the way I do ... I'm sure there's more though.  I guess I'm not alone.  

Sometimes I think it's so weird that Matthew has abnormally muscular legs ... my weakest spot.  Perhaps it's not about finding people who are like us and more about how we connect into other people's lives creating a diverse strong unit.  Learning from eachother and growing from each person's unique set up.  I certainly do fit into that picture.  I wrote about that in my last post about Matthew.  I just pray I bring enough to the table.