Directions/ Why it's Okay to Have Hope

Declan wrapped in a blanket from B4SMA

 So when I wrote to Families of SMA and requested an info packet they were all to happy to help.  In the packet were these magazines which they publish and send out.  It is full of information about SMA.  Research updates, info about the upcoming conferences, fundraising material, etc.  One of my, I don't want to say favorite part but it definitely means a great deal to me is the section that is dedicated to the children that lost the fight but are never forgotten.  It's called loving memories.  It is full of stories about other parents that went through the same thing we are but weren't able to fight against the odds.  I read these stories and I am brought to tears every time.  We are losing so many babies to this disease, it is unbearable.  My heart breaks every time I hear about a new death, but it makes me hold onto my hope that much stronger.  It's all we have.
   
  Which brings me to my next post I hope I don't get into trouble for it but I wanted to add some stories from this magazine onto my blog.  I see it as the more information we have about SMA/SMARD out there the better.  I hope to add stories here and there from the FSMA Directions.
 
   In the Fall 2010 V17 issue 11 of Directions in the Family Letters section page 92 for those that want to go read the whole story.
There is a letter from a mother, and she wrote about hope that I wanted to quote because I truly believe it expresses what I am going through.
      

Why it's Okay to Have Hope     By: Lisa W. Kay

     On several occasions, I have gotten the impression that someone (often a medical professional) was trying to remind me of the grim prognosis that SMA Type I carries.  I have heard of other, often more frustrating, stories from other parents.  Some individuals seem to be concerned that the parents might have "false hope."
      What I would really like to know is, how can hope ever be false?  Is hope "false" just because that for which we hope is unlikely?  Having hope would be easy if we always hoped for the likely outcome, wouldn't it?  I think I will hope that Ohio State has a winning season in football.  Maybe I will hope that Oprah make lots of money this year.  Then I would have "true" hope, right? 
       Is there a cut-off of some sort-- a point at which hope becomes false?  If the event in question only has a 5% chance of happening, then is hope false?  Maybe a 2% cut-off would be appropriate.  That's ludicrous, isn't it?
      Why is it that some folks feel it is their responsibility to bring us down to earth and give us a reality check?  I can tell you from experience that parents who have children with special needs live with reality smacking them in the face daily.  There is no way to escape the demands that Julia's condition has placed upon me; there is no running away from the latest update telling me that yet another child with SMA has died.  Having hope doesn't mean letting go of reality; it means living with joy, dignity and determination in spite of it.


I mean WOW. I loved it, that's how I feel.  I am sending a big Thank You to that mother for putting it into words for me. Great job.
There are tons of stories in these magazines, and I hope I can spread the word.
Help us find a cure go to Cure SMA.