The Importance Of A Snowflake??? …….Fighting Stiff Person Syndrome xxx

One may ask “why a snowflake ???”  , well let me tell you 🙂

 

The snowflake, firstly is deeply symbolic to me, as it represents the close bond between my sister and I. Lisa, dedicated the song “Do You Want To Build A Snowman” to me, singing it gently to me whilst cradling me through another bone breaking, muscle ripping spasm. Lisa says it reminds her of when we were children, such a close bond, which has continued into adulthood 🙂 Lisa has a smile that sparkles, when she sees it beginning to snow, her smile can light up a room…..I too love the pure, grace of the fist fall of a snowflake. 

The pure grace, elegance and purity of the snow flake is astounding. No two snowflakes ever the same……very similar, but not identical. Each snowflake that glides from the sky, has its own beauty and sweetness, just like all my beautiful friends with Stiff Person Syndrome. We may be one in a million, but we each vary a little differently in the way the condition presents and its implications on our life’s. We are just like snowflakes, very unique, but sharing similarities.

I am stamped as an individual snowflake…..full of purity, hope and wondrous of my future, not knowing where I may drift. However, what I do know, at this precise moment in time, is that my life has frozen. I lay here in my bed, wishing that the ice around me would melt. I fight everyday for a bright, happy, future with my precious children. Yet I am imprisoned in my own body, praying the compacted snowflakes will melt and release me one day…..so I am able to live my fairytale once more. This comes in the hope of raising enough funds for a Stem Cell Transplant, in the hope it cures my Stiff Person Syndrome, and for many others to have this opportunity also. The HSCT is still in its trial stages for a cure of Stiff Person Syndrome, however it has been successful with three beautiful SPS sufferers in Canada,  another two  people will be having the procedure in Denver very shortly and another in Russia.  I have my heart and soul crossed for each person in my SPS family,  and so far so good. I wish with all that I am to be rid of this ghost , as soon as I can financial fund the much needed procedure.

So as you can see, the snowflake has paramount importance in my life. I will carry this with me always, and pray that one day, I will be able to build a  snowman again with my sister and my precious tot’s. Until that day arrives, I will continue to hold on to my single snowflake of hope, and fight this illness…..and when I think I can not fight any more…..I will fight even harder.

The importance of a snowflake …….Hope 

 

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