I heard a quote once that went something like, "The best thing to do with skeletons in the closet is to take them out and dance with them."
I come from a long line of secret-keepers. There are plenty of skeletons in
our closets and as I find out about them, I do my best to take them out,
dance a little, but more importantly, learn from them.
A few weeks ago, my sister and I had this conversation while talking about my sister-in-law's recent amniocentesis.
Alison: "Do you realize that Grandma was only 30 when Ruth was born?"
Me: "Yeah, I knew that."
Alison: "But considering Ruth."
Me: "What are you talking about?"
Alison: "Because she had Down Syndrome."
Me: "She did?"
Alison: "You didn't know that? It was severe. She died because of complications related to it."
This was the first I remember hearing of this. A family secret, though I can't figure out why it would need to be kept secret.
This aunt was born in 1934, and died at the age of four, in 1938. My father never mentioned anything to me about it. My grandmother never mentioned anything about it. My living aunt, born three years after Ruth's death, never mentioned anything about it. It turns out that my living aunt didn't even know that Ruth had Down Syndrome until she was 41. My sister mentioned something about it at a family gathering in the early 80s (she had been told by our mother who thought it was common knowledge). I don't remember the scene, but my sister says my aunt sat stoned-faced at hearing this news and my grandmother later yelled at my sister for half an hour for mentioning it.
I don't get it. The information did give me a greater appreciation of my grandmother's sometimes hard life, but I don't understand why the silence. What so wrong or awful about having a child that is different? I suspect there are some social aspects of the times that I am not understanding, but Grandma was the type of feisty lady who would have been more likely to break with the norms of the day. Or, more simply, Ruth's life and death may have been too much pain for my grandmother to comprehend - Ruth was the second child she lost. My son is named after an uncle who died before the age of two.
The chromosomal difference my aunt had probably was trisomy-21, the most common form of Down's, and I am not at any greater risk for having a Down Syndrome child myself. Although the risks of chromosomal and genetic abnormalities rise if the mother is over 35, a trisomy-21 child can be born to a mother of any age. This news does have me thinking about the tests offered to pregnant women, however.
Next week, I have the option of having some blood drawn for the triple screen test (alpha fetoprotein, human chorionic gonadotropin and estriol levels). There are pros and cons for having this test. While some reports say that it has fairly good accuracy for picking up structural and genetic disorders, others say that the rate of false results is significant, and unless one is specifically at risk, the stress can be worse than the test itself.
When I was pregnant with my son, I had the test and it came back fine. I didn't think much about it. I chose to approach it as just another blood test. If the test had come back with any abnormal results, I might have been given the option of having an amniocentesis to check things out further.
As I approach the time to decide whether to have the test this time, I think about my motivations for having it or not having it. If the test came back with abnormal results, would I have the additional tests to figure out if this little one is different in some way? Probably, but I don't know for sure. Would such news change how I feel about the baby? I don't think so. I' m already attached to this little one. I love him or her. How could that change? I think, for me, I would just want to be prepared. I would want to have time to research conditions and options and possibilities so that when the child actually arrived, I would have a base knowledge of what to expect for initial tests and early development.
I also think about what it might be like to have a child with special needs. Although I know that I do not have any significant risk factors for having a child with Down's or some other condition, learning about my aunt and thinking about how her short life was so hushed up makes me think of how I might act differently if the situation were my own. Of course I am afraid of it. Not in a negative sense, I think, but fearful that I couldn't be a good enough mother to such a child. I already love this child unconditionally, afterall. How would I meet the challenge? How would I learn from this family skeleton? These are questions I should be asking myself regardless of test results or family history. The truth is that learning about my aunt brings me back to the reality that none of us are immune to the myriad challenges and complexities of life. None of us are invincible. None of us are perfect.
It's true that I don't know anything of Ruth's actual life. My father is the
only one left who knows anything of it, and he's not talking. And that's
interesting, in a way, because my dad is a history buff and one of his
favorite quotes is, "Progress, far from consisting of change, depends on
retentiveness... Those who cannot remember the past are condemned to repeat