Flashback #4 - Didn't you have the test?
Friday, 29 April 2016
Didn't you have the test?
This is the question I am most asked when people discover Emma has Down Syndrome.
'But didn't you have the test?'
We did have some testing, and when that came back with a 1 in 750 chance of Down Syndrome we chose not to test further. The result wouldn't have changed our decision whether to keep her or not, so there was no point in having further, more invasive, testing. I probably would have agonized for months over how this would affect our lives, so in a way I'm glad that we didn't know before she was born. It may have been good, though, to know, so that we could have been connected with support much earlier.
The question I ask now though, is 'What would the world look like without Down Syndrome?'
In the 8 short weeks since Emma was born, I have been shown a world full of love, a world full of challenges, a world full of support. I have met people whose lives have been forever altered by having a child with Down Syndrome. I have, however, not met someone whose life has been destroyed by having a child with Down Syndrome. The people I have met are full of positive stories, of challenging stories, of funny stories about how their lives have changed. Not one of those people wishes their child to be without Down Syndrome. If you took it away, they wouldn't be the same person, would they?
There has been some talk about the ability of science to remove Down Syndrome. To discover and remove the extra gene, therefore 'curing' it. I'm fairly sure this is not able to be done after a person is born, but who knows how it will happen once science catches up with itself. What would the outcome be? What would the point be?
I know that Emma will face some challenges in her life, but all people face challenges. I know that Emma may struggle to learn to walk or talk as quickly as a typically developing child, but some typically developing children also struggle with learning things. I know that when the time comes for Emma to get a boyfriend (or a girlfriend!), move out of home, and live independently, I will struggle with letting her go. I'm sure I will also struggle with those things with any other children we may have. There's nothing that she can't try, nothing that she can't do, if she wants to.
There are many people who find out that their child will have Down Syndrome that do not have the same view as I do. That presented with the facts, cannot see themselves raising a child with Down Syndrome. They choose to not raise this child, and instead terminate, or put the child up for adoption. The reality of the world is that some people believe that they are not equipped to handle whatever it is that Down Syndrome may bring to their lives. I cannot judge these people, because I do not walk in their shoes. That decision must be the toughest one to make, and they are very brave to make it. Loss is horrendous, whether you choose it or the choice is made for you.
I don't want a world without difference. Difference is what makes us unique. Difference is what makes us love and appreciate ourselves and our family. Difference is how we learn to be ourselves.
I don't want science to take Emma's difference away.
'But didn't you have the test?'
We did have some testing, and when that came back with a 1 in 750 chance of Down Syndrome we chose not to test further. The result wouldn't have changed our decision whether to keep her or not, so there was no point in having further, more invasive, testing. I probably would have agonized for months over how this would affect our lives, so in a way I'm glad that we didn't know before she was born. It may have been good, though, to know, so that we could have been connected with support much earlier.
The question I ask now though, is 'What would the world look like without Down Syndrome?'
In the 8 short weeks since Emma was born, I have been shown a world full of love, a world full of challenges, a world full of support. I have met people whose lives have been forever altered by having a child with Down Syndrome. I have, however, not met someone whose life has been destroyed by having a child with Down Syndrome. The people I have met are full of positive stories, of challenging stories, of funny stories about how their lives have changed. Not one of those people wishes their child to be without Down Syndrome. If you took it away, they wouldn't be the same person, would they?
There has been some talk about the ability of science to remove Down Syndrome. To discover and remove the extra gene, therefore 'curing' it. I'm fairly sure this is not able to be done after a person is born, but who knows how it will happen once science catches up with itself. What would the outcome be? What would the point be?
I know that Emma will face some challenges in her life, but all people face challenges. I know that Emma may struggle to learn to walk or talk as quickly as a typically developing child, but some typically developing children also struggle with learning things. I know that when the time comes for Emma to get a boyfriend (or a girlfriend!), move out of home, and live independently, I will struggle with letting her go. I'm sure I will also struggle with those things with any other children we may have. There's nothing that she can't try, nothing that she can't do, if she wants to.
There are many people who find out that their child will have Down Syndrome that do not have the same view as I do. That presented with the facts, cannot see themselves raising a child with Down Syndrome. They choose to not raise this child, and instead terminate, or put the child up for adoption. The reality of the world is that some people believe that they are not equipped to handle whatever it is that Down Syndrome may bring to their lives. I cannot judge these people, because I do not walk in their shoes. That decision must be the toughest one to make, and they are very brave to make it. Loss is horrendous, whether you choose it or the choice is made for you.
I don't want a world without difference. Difference is what makes us unique. Difference is what makes us love and appreciate ourselves and our family. Difference is how we learn to be ourselves.
I don't want science to take Emma's difference away.
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