Many parents will tell you that when they found out that their son or daughter had a disability or additional needs they too went through a process of grieving; grieving for the loss of the hopes and expectations they had for their child, and for their own life.
This is perfectly understandable; perfectly natural.
When we try to imagine our future, we all hold certain assumptions about how our lives will pan out. These are usually based on the kind of lives lead by our families, friends and peers, though we may dream of achieving something different, something better. When it comes to picturing our future children, the babies we see in our mind’s eye are regular, typically-developing, cherubs (just a bit cuter and more talented than other people’s, of course). They reach all the milestones right on cue, they grow up and become independent, they have the kind of careers we could only dream of, and they give us grandchildren (but not until we’re ready).
For those parents who have a healthy child who falls victim to some devastating disease or accident the grief must be especially sharp and poignant. For them ‘what might have been’ was once reality. Their hopes were, at one time, tangibly within reach.
But when I was told that Freddie has Down’s Syndrome I did not experience this reaction.
I can honestly say, hand on heart, that I have never felt a single pang of regret for the boy he might have been. Not once have I felt that we were cheated of the future he should have had. This is not because I am the sort of placid, saintly, or martyr-esque person who simply bows her head and willingly accepts every circumstance without question. This is not because I had come to terms with it before he was born – having found out in early pregnancy that the chances of my baby being born with Down’s were very high.
I think this is because Down’s Syndrome is a condition that occurs at the moment of conception.
The extra chromosomal material that causes it is knitted into the fabric of every single cell, and always has been from the very first spark of life. Down’s Syndrome is as much a part of my child as the blue eyes he inherited from his father and me.
There is no Freddie without Down’s Syndrome.
The life, and the future, he has is the only one he ever could have had.