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Information Agency News Sometimes, it is just better to know
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A Parent's Point of View
Sometimes, it is just better to know
by John P. Cleary
February 20, 2010
That's what I thought last week when a genetic counselor explained to my wife our youngest daughter, Lizzie, almost 3, has a tiny duplication of material on one of her chromosomes. Among chromosomal disorders, Lizzie's is pretty rare, but it has been seen often enough the counselor could paint a general picture of what lies ahead for Lizzie.
What the genetic screenings have revealed is something called 15q duplication. She has some extra genetic material on her 15th chromosome. That is why she is so small, was physically weak as an infant and toddler, why her expressive language is so limited and why she is intellectually disabled.
Hearing such news can be devastating for a family. It is a confirmation your child might never be like her peers, no matter how hard you hope she will be, no matter how much love and attention and intervention you provide. By reasons completely outside of anyone's control, Lizzie's potential is, to some degree, limited. It's not the kind of thing you want to hear about your loved one.
There is a bright side, and it is why we pushed for the testing. Knowing there is a genetic base for Lizzie's issues, and knowing what others with that condition have endured and accomplished, is incredibly useful. Every child is different, but at least now we have a frame of reference for our expectations. We know now, for example, we should pay closer attention to the minor heart defect Lizzie has, because it has had serious consequences for other patients. We can now better plan Lizzie's schooling and therapeutic options and better understand her relationships to us and her siblings.
And we can begin planning for her future with the understanding and acceptance that she may need lifelong supports and care even after my wife and I are gone.
What putting a name to Lizzie's problems doesn't do is change our feelings for her. She is joyful and tender, curious and caring. She will have an amazing life full of achievements and happy experiences. We are happy she has come into our lives, and grateful for the opportunity to be her parents.
Now that we know what Lizzie's weaknesses are likely to be, we can get on with helping her live the best life possible. For us, more than ever, knowledge is power.
John Cleary is a former Neighbors columnist for the Star-Gazette.
This is a reprint of an article that appeared in the February 20, 2010 Elmira Star Gazette.
(John Cleary is the parent of children with developmental disabilities and a writer/journalist who resides in the Southern Tier of New York.) |
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