Our Extended Families

We spent a great deal commiserating with our extended families over the course of the convention this last week.  A tremendous amount of emotions exuded from inside my heart….love, understanding, grief, familiarity, and vulnerability – as well as hope and excitement for new connections.

Most of my emotions were a natural course to the situation.  I felt love and understanding for the parents – especially the newbies who were about to embark on a journey that is all too familiar with ours (Ian’s and other older RSS children).  The grief was in part a rememberance of my first encounter with the convention – in that I had cried the entire first three days with the overwhelming amount of information and fear of the unknown.  These emotions rang true through the course of the last several days.  New parents admitted their fears, their denial of their newfound diagnoses and the wonderment of so many other families of children that looked “just like their children”.  And of course, the vulnerability – of again – opening my heart to others whom I have never met before and offering my support and love to those I hope will have successful and less turbulent rollercoaster rides as many of us do….during the early years of an RSS child.

But it was the hope and excitement of the new information that lit up in everyone’s faces.  The “older” crowd proud to know that many of their children were doing very well with their treatment protcols, and the individuals such as my son Ian – who could have used the information we know now – five years ago – but, happy to know that the children up and coming into their new diagnoses will have even more knowledge and better treatment options based on experiences that have been so valuable to so many of us through the years……..

There was an even more special moment for me and Ian on Saturday.  We were at the pool and a 10 year old boy by the name of Jacob – came up to me and asked what Ian’s name.  Apparently, Jacob explained to me that he thought Ian was “another” RSS boy that he had met earlier in the week.  I was amazed at how Jacob looked SO much like Ian, as was Jacob suprised to see yet “another” boy – other than the one he was looking for – that looked so much like himself.  I introduced Jacob to Ian – and they smiled and exchanged a few typical child-like comments to one another – and then they went off on their merry way.  Playing their original games – as if nothing knew had happened between them.  But, I knew otherwise.  I knew this was, and would always be in some way – a special moment for both boys.  Whether they would take this encounter with each other as a grain of salt for now – I knew they would ultimately catalog this moment in their minds as a comfort in their hearts – knowing….they were not alone on their journey.  That there ARE other children with similar features, going through similar experiences, with similar futures…..together.  It was a beautiful moment. 

I’m happy to say that I have renewed and made new acquaintances, friendships and bonds again this year.  I am so blessed that I can be a part of such loving individuals who are passionate about their children and their lives.  And I pray that my support and guidance, love and friendship is as invaluable to everyone I meet – as it has been for me.

Blessings my friends.  I look forward to seeing you again in the future.

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