Saturday, April 02, 2011

A Reality Check

We've been very careful how much we tell our family about SMA.  We haven't wanted to scare them or upset them: actually, moreover, we have wanted to protect them.  We thought that if they wanted to know more that they would ask us or get in contact with Jennifer's Trust or even do their own research.  Some have done their own research, to quite their detriment unfortunately while others have been hoping and praying for miracles...

D was talking to one family member about home adaptations recently and they said "But will she not be able to walk a little, perhaps with the help of crutches?" and I think that his heart sank; no wonder they had been hoping and praying, we had never mentioned that Eilidh will never walk.

Our moments of clarity, realisation and acceptance may come slowly and gently upon us or hit us square between the eyes at one hundred miles an hour: we will, most probably, reach these moments at different points in our journey through life (with or without SMA).  One thing is certain, we will all feel and react differently during these moments, but, with our family and friends by our sides carrying us high,  we will cope and survive and carry on living a truly blessed life.



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