I think somethings snapped.
Last night I came out to use the computer and saw a young mother with a beautiful little boy of 8 months. We chatted briefly and his eyes grew huge while looking at me ... kind of like he was trying to fit all of me in. I didn't say anything to Mom 'cause I wasn't quite sure but he looked like he had Down Syndrome. But it could have gone either way. So, I let it go and we just chatted. Smiling I went to work on the computer.
Afterwords I was thinking about her and the thought popped into my mind, "Gosh, I really hope he is." Forgetting for a second that we lived in a world that devalued kids with Down Syndrome and disability, I just thought about the 'ride' that mom was in for - the unexpected joys - the land that she was about to become a citizen of - the opportunity to relearn and redefine joy. I guess it was because I'd spent a couple days talking with some mom's of kids with Down Syndrome, maybe because I'd just spent some time talking to a young guy with Down Syndrome who was with his family at a conference, maybe it's because I'm finally at the point of realizing that disability does not equal tragedy.
I know, I know, I don't have kids. I know, I know, I don't know what it's like - really.
But, but, but, there are some many people who I meet that have had their lives so fully enriched by parenting kids with Down Syndrome. The look of the parents at the World Congress in Vancouver were like they'd been given a ticket to an exclusive club with it's own language, it's own sense of humour, it's own unique view of the world - I was suprised that there wasn't a secret handshake to go with all of it. Watching, I felt like an outsider - envious of the connection these parents had with each other and with their kids.
So forgive me, I'm not wishing Down Syndrome on some poor family, I'm wishing purpose and meaning and joy on some lucky family - because of Down Syndrome.
Something snapped in me - and I feel freed.
Thank you for your post. As a mother of a precious 5 year old with Down syndrome, I find it encouraging that someone that is not in our world can see what we see. My life is blessed because of that extra chromosome. I hope that many people will read your blog, stop and think to themselves that it really is not something to be afraid of. It is not a death sentence and it is definitely something to feel sorry for.
ReplyDeleteThank you again. You have made my day.
Oh my goodness, that was absolutely beautiful!!! I just have to share your realization with so many people. As the mother of a little girl with ds, I am thrilled that you snapped!! Many blessings to you. You are indeed very special. My day was made as well.
ReplyDeleteThank you Dave . Your words made my day, my year even! You hit the nail on the head.
ReplyDeleteWe feel we do have a secret, that only us who have pure unconditional love for and from our children can understand.
Not many in the so called perfect world, want to believe us that any child can bring your pure joy, even a child with DS. The feeling it left you with, is a small insight into what I discovered when my son was born and I made sense of the changes, it made in me as a human being. Welcome to our world.
If we only change the perceptions of one person at a time in this world, then there is hope for mankind.
Although I do not have a child with Down Syndrome, I do know and adore many adults with DS. Just like any other attribute, DS is just something that, combined with a thousand other things, makes them who they are. Your words could be directed toward a myriad of conditions, syndromes, abilities, sizes, colors, ethnicities, etc. It takes all kinds to make a community!
ReplyDeleteThanks for the inspiring words.
Ooops! I meant to say that is definitely NOT something to feel sorry for. What a goober I am! LOL!
ReplyDeleteThanks again for your words.
I am a Professional hence the choice to remain anonymous.I think it was naive & foolish to state "Gosh I hope he is" when referring to a boy who may have DS.I work with alot of Parents who although they love their children, would prefer to have children without a disability.I do not know a parent (and I am one)who does not want a healthy child it is wrong & a denial to think otherwise.
ReplyDeleteMy son has Down syndrome and he *is* healthy. I don't want to change anything about him. I too don't "wish" Down syndrome on anyone, nor do I wish ""genius" or "athletic talent" - we are as we are, and different is not necessarily unhealthy. I am not in denial, and find that statement offensive. We can all make the most of what we come with, given a welcoming community.
ReplyDeletePerhaps there is a secret handshake ..... and not everyone even "on the inside" knows it yet.
ok Dave,
ReplyDeleteI think I hear you, and definetly hear all the comments here - so I don't wish anything really upon anyone - but whatever finds them happiness! and I accept there place in this world, alongside me, searching for our happiness together. I will work on snapping - I promise!
Posted about this bit elsewhere. To whit:
ReplyDeleteHingsburger writes well, often has good ideas and insights, but I think he's gone overboard on that post.
I don't see myself ever looking at a baby and thinking, gosh, I hope that kid has Ds. Don't see myself wishing heart defect, greater risk for leukemia, mental retardation, developmental delays, nor autoimmune, thyroid, GI problems, and on and on, on any kid or parent or family either.
I know I've seen a number of new or relatively new parents who seem to come to the conclusion that Ds is the greatest thing since sliced bread. Well, if that works for them, fine. But they'll have to excuse me for not joining in. I think I've consulted the experts, Jason Kingsley and Mitchell Levitz; and they told me, wrote, that Ds is a hard thing to deal with, but they were handling it okay.
Now that's not to say that some kids, people with Ds can't occasionally enjoy some of the perks that accompany their condition, extra presents, added treats, special treatment, or even avoidance of unpleasant task by "playing the extra chromosome card." But they still have to deal with the difficulties, limitations, differences imposed on them by Ds.
So, no, Ds is not something I'd wish on nor for anyone. I've said before that Ds is not something I'd wish for my best friend--wouldn't want them to have the heartache--nor my worst enemy--wouldn't want them to receive such a blessing. Rodney Rowan put it much nicer, and more concise, "Having a child with special needs is a strange gift. It is not one I would ever wish on anyone, but would never give up having received it." http://www.fathersnetwork.org/590.html?page=590&SESSION=9326c741aa1165ec06bdec83cd11a33b&s=0
Dear Anonymous "professional", Please stay away from me and my family and kindly take your "professional attitude" with you. We'll do just fine without YOUR help, thankyou very much.
ReplyDeleteNobody's hopeless... You could spend more time reading Dave's blogs. Maybe in about a hundred years they'll start to sink in.