So. Apparently there is a lot of ignorance and even hatred out there about individuals with Down syndrome. I’m sure I’ll blog about this again at some point, but I want to put this out there now. I want to talk about how this feels after 16 weeks.
When we received Rowenna’s diagnosis, I was immediately afraid of her being judged on her appearance alone. This is a condition people think they can “diagnose” based on sight. Think about it – even if you know someone is deaf or has a cognitive disability, there is no way for you to immediately know what caused it.
Not so true with Down syndrome. Yes, there are certain facial characteristics that are common to many individuals with Down syndrome. You can pick an individual out of the crowd. What you can’t do is know exactly what his or her abilities are. There is definitely a feeling out there that all individuals with Down syndrome have extreme cognitive disabilities, extreme to the point of needing institutionalization from toddlerhood on.
The truth is that the abilities associated with Down syndrome fall along a very wide spectrum. Yes, it is possible my child may halt at a level of development that would one day require her to live in a nursing home. It is far more likely (and this is supported by myriad scientific studies) that she will at least achieve a level of ability where she can read, write, and advocate for herself. Is she going to read War and Peace? Well, maybe not. But I ask you, those of you who have the intellectual ability to tackle such a tome, have you read War and Peace? It is also possible that she may have a job or volunteer position in the community, attend a modified academic program at a well-respected college, and live on her own. And for goodness sake, for the truly ignorant out there, my child will walk, talk, be potty trained, and feed herself. We don’t even worry about those milestones because we know they’re coming, just at her own pace.
A common complaint of us optimistic Down syndrome mommas is that we lie about the abilities of our children to put a sunny face on to the world. Believe me, we are all well aware of the possible limitations coming down the road, but what is it about a snuggly, smiley, walking-talking-potty-trained 4 year old that requires institutionalization? In what way is it a sad exaggeration to be proud of a two year old who is talking? I didn’t realize that when I received Rowenna’s diagnosis I was supposed to hang my head in shame and apologize to the world for her “burden.” I also didn’t realize that for the comfort of everyone else I should hide her from the world so you don’t have to feel uncomfortable.
I also hear and read a lot about how “these kids” shouldn’t be brought into the world. I am not here to debate the issue of abortion. What I do want to point out is not all parents have the “choice” to “interrupt” their pregnancies due to Down syndrome. Looking at my child and wondering why I didn’t abort, or telling me to my face that I should have aborted, is a completely futile exercise because, well, we just didn’t know she had Down syndrome. Her diagnosis was a complete surprise and here she is. To silently judge parents for “allowing” their child to live is beyond ignorant and is truly hateful. Feel what you want about raising a special needs child, but to be upset that our children exist at all, to call us ignorant, to tell us our children are a burden…that is pointless. You may as well shake your fist at the sun for shining.
I guess my question is this: if you truly feel a child with Down syndrome should not be born, what do you propose I do now that she’s already here? Should all women be required to have an amnio or cvs procedure to determine if genetic conditions are present? And then should we all “interrupt” our pregnancies? What about conditions that can’t be found prenatally? Diabetes, childhood cancer, autism? Should all of these kids also not be alive because it is “less than optimal” to experience this? Should we just send all of them to live in a home? Where do you draw the line? I genuinely wonder about this because the logic of some people just does not compute. Believe what you will about abortion and aborting for chromosomal abnormalities, but I truly do not understand the belief that only perfect human beings are allowed to live.
I guess what I’m getting at here is that to spew hate over Down syndrome is pretty bold. Life is incredibly fragile. We are all a car accident away from a cognitive or physical disability. In a way, knowing our child will have limitations and possibly need special care as an adult is a gift. We can prepare now for her future. We can prepare now for the scenario in which she has no parents. Our daughter will not be a burden on this world.
So this is my stake in the ground: my daughter is valuable. Our life will have challenges. She is here, and here to stay. A person’s worth should not be based on their financial or intellectual contributions to this world. A person’s worth is in her virtues and in the kindnesses she shows others. Whether she works or not, reads or not, talks our not, our daughter will bring value to this world.