I will be clear about it from the start. I have two children with Down syndrome. A biological 5 year old and an adopted 4 year old. I've read many articles about special needs..."5 things a mom of a special needs kid wants you to know"...:what it really means when your kid is special needs"..."This mom doesn't want your pity".
I was compelled to write this post to address some comments I've seen recently that a few people have written. When the topic of Down syndrome comes up I see an inevitable comment that goes something like the following "parents of a special needs kid must be delusional because of course their child is a burden, how can they not see it." Now I understand that sometime these things are sad to rile people up. These "trolls" like to stir the pot. Well they got my thinking stirred up for sure.
When I first saw these statements I had to sit back and think, are my two daughters a burden? I first went to the dictionary. I wanted to make sure I was clear on how a burden was defined. I found several descriptions, but two definitions seemed to fit. 1. a load, especially a heavy one 2. a duty or misfortune that causes hardship, anxiety, or grief; a nuisance.
As I started thinking about how my children with Down syndrome could possibly be a burden, what immediately jumped to mind was what my family had just been through to adopt our youngest Yes, it was a huge burden to go through the many loads of paperwork and then travel to rescue my now daughter from a foreign land that didn't want her. Yet, this is no different from what people do when they adopt a typical kid, so I don't think it counts as a "burden" simply because my child has Down Syndrome.
My 5 year old had Leukemia when she was 2, went through a course of chemotherapy, got an infection, was put on life support and survived after being given less than a 5% chance of living. Was this a burden? No, because I know several typical children who have had the same type of cancer and have died because of it.
Both my children need speech therapy on a weekly basis. Is this a burden? No, because there are typical children who do various therapies every week for their various issues.
I thought through several other scenarios, but came to the same conclusion. These things I thought of couldn't count as burdens because again typical children experience them as well. They weren't unique to me simply because of Down syndrome. They are just the things that come with being a parent of a child.
As I thought through this it hit me. These people who make these silly comments see my children or others with special needs as burdens. They don't value people for their individuality and uniqueness. They value people for what they can do in the world. If you can't meet or attain a certain amount of success...notoriety or simply usefulness, then you are a burden. I couldn't disagree more.
My 2 daughters have taught me more than my typical kids ever have. They have also taught my typical kids as well. These things that I have learned from them aren't tangible. They didn't teach me to change out a transmission or choose the right stock.
They have taught me that a 4 or 5 year old can persevere more than me, be more patient than me, show more unconditional love, not hold grudges, give hugs to everyone, be joyful in a difficult situation, dance to any song, treat others with kindness and bring people of all different kinds of beliefs together. They have made our world smaller by bringing us into a larger world we weren't ever a part.
These are the intangibles of life. These are the things that make life worth living. These are the types of things that people want to be remembered for.
So no, it's not a burden to have these two little girls in my life. I and my wife are not delusional. In fact I'd like to think we are pretty grounded and aware of what these girls have brought into our lives and what our future holds with them staying in our lives. We look forward to it.