Tuesday, June 24, 2014


This is a hard one to write,  sometimes even think about... But I am scared. Scared of the future, what it will be like without my baby boy,  my superboy.  I'm scared for Becca, Brian,  our extended family, me,  the list could go on.  I know the inevitable will happen, just not when.  It could happen in a second, all it could take is one plug or it could continue slowly over time robbing his ability to do what little he still can. Ian is doing well at this time, we are seeing small signs of disease progression; I wanted to make sure everyone knows this. Over the past few months we have seen upper body muscle spasms,  him having a harder time saying his "s",  every once in a while taking naps during the day.  Overall, he is doing well.

Over the years, Ian story has gotten out there. We have worked hard for that,  not wanting another family to go thru what we have to get a diagnosis. Education about PCH1A (VRK1) is so important to us. Letting others know this disease is out there, maybe someone will read our story and know someone else who sounds like Ian.  The unknown was horrible, while knowing is also horrible but still better. Typing that last sentence does not really make sense yet it does, knowing Ian's diagnosis is horrible because the diagnosis is horrible,  the unknown of what each day will bring,  but isn't that the same for everyone.  It is but in our case it is still a little different...

As Ian's story has gotten out there, the support has been unbelievable. The words from others... "you are an inspiration", " your family is amazing",  "xo",
" Your blog post updates inspire me constantly. You are one hell of a woman and you have one heck of a family. " I am sharing these comments because to me I am not these things,  my family is not these things.  We are just a family who was dealt a shitty hand trying to make the best of it.  Brian and I are taking care of our kids the best way we can.  We are trying to raise Becca to find the positive side of every situation, because if you look hard enough there is one. I don't want any of us,  especially Becca,  Brian and myself to have regrets when Ian is gone. Thank you all for the first continued support,  for being a part of our village and for sharing our story.

I am scared...

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