Monday, June 18, 2012

2 years


Grief is a horrible thing; the pain and sorrow that you experience is so deep and consuming.  We often think of grief in terms of death but grief is not just about the end of a life; we grieve over the loss of a loved one, the end of a relationship, the end of dreams and expectations and hope.  For me grief relates to the diagnosis of my daughter, my Eilidh, with a genetic condition which means that she is unable to walk, a condition which may mean that she doesn't live to see her adulthood.  I grieve for the baby, the toddler, the child, the teenager and the adult that Eilidh could have been before SMA.  I grieve for the broken dreams of my child, my family, myself.  I grieve for my normal life pre-SMA.

This form of grief should not be belittled – and I might have done just that had I never experienced it myself.  I have been told that grieving in such circumstances is normal, but complex and to me it is real and insurmountable and feels at times to be never ending.  And I know that I am not alone - other parents of children with special needs feel it too...


A little over two years has passed since Eilidh's diagnosis.  (Where has the time gone?  Has it really been that long, for there are times when the enormity of Eilidh's diagnosis is as painful as it was that day in May...)  The diagnosis (damn you, SMA! DAMN YOU!)  remains unchanged, Eilidh knows no different (for the moment at least...) and my broken heart is (I think) healing...  A profound fault line still remains, a weakness in my heart which could fracture with little warning, with little or no provocation.  I teeter above a chasm of grief, not moving through the chronological stages of denial, anger, bargaining, depression and acceptance but flitting between them as a knight would move.


My feelings towards this disease - this god damn awful disease - change frequently and can do so as the minute changes or as the hour passes.  A situation will demand or the experience command a reaction, an emotion, a feeling, and some days I am at the mercy of my emotions - on others, I carry on regardless, seemingly numb to my thoughts and feelings.  I get through the days any which way I can, present in the day - for there is really no other way to live when you have a child with special needs.  There is no right or wrong way, there is only my way.  There is no natural chronological order to my grief and by realising this I feel more free; I am no longer governed by my anger or frustration or wavering acceptance,  for what I am feeling is natural and, after all, it's only been two years...  Two years, I have been told, is nothing in terms of grief, but, in this case, living with a child with special needs, I sincerely doubt that there will be a return to normality with time, that acceptance will ever truly be reached.





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5 comments:

Midlife Singlemum said...

I can understand your grief because you now have a different Eilidh from the one you had in your dreams for her future. That's a big thing to lose even if it was never a reality, it was your reality. It should have been Eilidh's reality. My heart goes out to you. xxx

h0peful mummy said...

had i not experienced it, rachel, i would still underestimate the loss, but i now realise what a momentous loss it is to lose a dream. thank you, as ever, for being there x

Ellen Arnison said...

What a moving post and so honest. x

h0peful mummy said...

thank you, ellen. i thought that i should have moved through to acceptance by now but realise that this isn't and doesn't have to be the case x

BavarianSojourn said...

I would never belittle anyone for this type of grief, it's just as relevent, and I imagine just as painful. You are a very brave lady Mrs, and Eilidh is just amazing xx