I saw someone with Down Syndrome today.
Sitting in a baby chair.
In a restaurant.
His mom was trying to feed him.
His dad was trying to distract with with play.
They were all laughing.
Mom said, loud enough to be heard, 'I just love you two boys.'
Dad said, loud enough to be heard, 'And I love you too,' then he kissed first her, then him.
Loving out loud. Loving out proud. Loving outrageously. Loving defiantly. Loving in full view. No closets. No basements. No attics. No institutions. No back wards. No hidden places. Being family. Being parents. Being together. Being being. No apologies. No reservations. No limitations. No exceptions.
Loving as a political act.
He kissed them.
Both.
She loved them.
Both.
They laid claim to each other. They laid claim to their child. They laid claim to their life as a family. They laid claim to their right to be - all of them to be - where they were, doing what they were doing, loving as they were loving. They laid claim to the life they had together. They laid claim to the journey they had ahead of them. They laid claim to the bond that would unite them. They laid claim in clear view. They laid claim in public. They laid claim to the love that made their child, the love that formed his hands, the love that gave life.
He laughed.
She laughed.
He laughed.
This child. Their child. Their joy. Their hope. Their love. This child. Their child. Was not a 'wrongful birth'. Was not living a 'wrongful life'. This child. Their child. Did everything right. His eyes sparkled when his dad played with him. This child. Their child. Did everything right. He made his mother laugh till she cried. This child. Their child. Did everything right. He made them family.
He loved his wife.
She loved her husband.
They loved their child.
Their child loved them back.
A moment in time. A moment that was timeless. A moment that testified to the power of love, the power of laying claim, the power of family. Family.
Sometimes love is a political act.
Sometimes family is an act of rebellion.
Sometimes hearts do just what they are supposed to do.
Some who were born right live wrongful lives. Some who were born different live bountiful lives. Some think they can predict the future. Some think that they know the path another's feet will follow. Some don't know what they don't know.
And a gift was given.
A small gift.
small.
The woman who came to take their trays from their table. Wore a wedding ring. Earned a paycheck. Contributed to society. That woman. That woman. Noticed the baby. Glanced at the parents. Spoke.
'What a beautiful boy.'
Then she smiled and said,
'He has Down Syndrome like I do.'
She left them at their table as she went back to work. Work. Somewhere, someone, is telling someone, somewhere, that something more means something less. That an one more gene means many fewer dreams. Someone, somewhere, is wrongly misleading someone, somewhere.
I know.
Because here.
Now.
Everything is right.
Just right.
38 comments:
Lovely. Absolutely lovely. and - YAY!
Dave. You're a wonderful writer. What you wrote in this blog post touched me.
Thank you for being such a careful observer of the world around you and sharing the thoughts, insight and inspirations with us.
And very apposite for the week in which World Down Syndrome Day falls (on Wednesday 21/3).
When Declan was very young I read about. A mother who said of her son with Down syndrome "... We don't just love him because he's ours - we love him because he is so convinced that we are his." And that's very much how it is!
Thanks Dave - as always, acutely observed.
Jill
Dave - can you explain your statement "sometimes love is a political act" please. I may not be "artsy" enough - but I don't get it. Thanks...
I am so glad I ran the risk of being late to work this morning, just to read your blog. What a powerful, positive use of words! As a mom of a beautiful 20 year old young woman with DS, I thank you.
Made my day!
This moment in time is what I believe Dr. Martin Luther King Jr. saw when he was at the mountaintop and looking into the promised land. We are approaching the promised land and more and more snapshots of life will show humans "being" just like this!
Thank you. I've been reading way too many comments on the "wrongful birth" decision lately where people talk about how our kids with Down syndrome shouldn't exist. I needed this one!
Dear "Anonymous" above -- I suspect what you're missing is not so much "artsy-ness" but the broader context.
I don't know if you realize, but these days, in most developed countries, the decision to allow a child with certain genetic conditions--including Down Syndrome--to even be born is usually a deliberate choice. More than 90% of parents who learn that their child might have Down Syndrome abort that child. Most of the ones who don't abort either knew about the Down Syndrome, and in many cases probably had to face a LOT of pressure from medical personnel, family members, and friends telling them that they "ought" to abort. Or else they refused to have the fetus tested altogether, often on the conscious knowledge that no matter what they would keep the child. Even after the baby is born, some families and friends may still object to the parents' choice to have allowed the baby to be born, and their ongoing choice to raise--and love--the baby. This is what can sometimes make love a "political" act--it becomes political when other people tell you it's wrong and you continue to love anyway.
Another context in which love can be a "political" act is when gay/lesbian/bisexual people fall in love with someone of the same sex/gender and choose to express that love by maintaining their relationship with their partner--even when others in their religious institute, family, or community try to tell them that this kind of love is sinful and wrong. Love--or more precisely, choosing to express love even though you know some people will disagree with your choice to do so--can become a "political" act in that context. Not the subject of this post, but I'm sure Dave was conscious of the similarity when he wrote it.
Of course, for people who love whomever it is they love (parents/child, partner/partner etc) they aren't consciously thinking, "I'm going to make a political act by loving whom I love!"--they're too busy just loving to think of politics. But expressing that love is still going to be viewed by some others as a form of defiance ("how dare they do this!?"), and that's what turns the expression of that love into a "political" act whether or not the people loving intended it to be.
That was just lovely...thank you.
Thank you so much Dave!! You made my day! What a blessing you are to so many.
Thank you Dave for your uplifting post and thank you Andrea S. for your great explantation.
Julia
Very touching and insightful. So often, one just either stares or looks away in embarrasement and/or ignorance. It was just a beautiful piece to read. Thanks for sharing.
Linda
Thank you Dave, and also Andrea.
Another Sharon
Thanks all ... wow ... I've never been considered 'artsy' before! However, Andrea is right, I wasn't attempting to be anything other than exact in my use of the word. When I see two men or two women walking downtown here where I live, holding hands, I know that I am seeing both 'affection' and 'politics.' Love, and the public demonstration of love, can be the most political act we ever perform.
This is beautiful, Dave. Thank you for a lovely start to the week.
Dave you have a wonderful way with words! Your description of what you saw touches any heart that takes the time to read it. I would have loved to have been in your shoes. My husband's aunt is DS. She is now 58 years old. She grew up in a time when such children were hidden away in "homes" - her parents refused to do that. They were making a political statement of love! Some of her family still want for her to be put in a "home" but one courageous sister holds them off, and has given her a home since her mother died. Since I married my husband I have known this woman. I have always treated her as I would any other human - and we get along famously!
Once again, thank you for those inspiring words Dave!
- Beannie
Andrea - thank you for your in depth answer to my question. I certainly can see your side - although I don't see the "negatives" presented as politics. Isn't politics, in broad strokes, the governing of a country. Because something may be opposed doesn't make it a political issue - unless we, the people, make it one. You did make me see something different, and for that I thank you - but I have a hard time putting love, real love, in the political arena. Isn't how we define words interesting??
Oh "DANG!" I did not want to write explantation but explanation....
Julia
Oh yes, it doesn't matter WHO makes it political but it can be political DESPITE YOUR WANTING LOVE TO BE POLITICAL. Getting questioned regularly or EVER about prenatal testing IS political essentially--WHY is the question DID YOU KNOW? Without knowing ANYTHING about the issue the medical community or society in GENERAL has SCREENING equaling terminating in everyone's mind of any failed testing.
THAT IS WHAT MUST CHANGE and it has to be medical school or something driven from the ONSET of learning and how we talk about TESTING.
thank you !! LOVE & happy tears : )
thank you !! LOVE & happy tears : )
Lovely simply lovely, and I agree what a beautiful start to the week.. Thanks again Dave!!
Bravo!! What a wonderful post!
Awesome! And so timely (with World Doen Syndrome Day being tomorrow). I'd love for you to see this video I made of my little guy. It is called "I Do Not Have Special Needs."
http://youtu.be/ux0aLYCs9SI
Well said. Kudos!
Sometimes I don't know what to say to your posts dave, this is one of those times but I wanted to leave a comment. Reading that made my day :)
To anonymous, again
Perhaps I should have found a better way to amplify my meaning.
You are correct that love SHOULD not be political. It's just pure simple love.
The problem is, we live in a world in which some people do choose to politicize love. They do this by saying "This kind of love is okay but that kind of love is wrong, sinful, irresponsible, selfish, etc." And then they go about establishing laws, policies, regulatiions, standard practices etc. that enforce their view of what kind of love they think is or isn't okay. In the context of GLB people, this means making it harder for same-sex couples to get married or (in some countries) even hold hands in public without being put to death. In the context of certain kinds of pre-natal testing, this means a standard practice of simply asking parents to submit to certain tests without considering that some may want to think carefully about the risks of the test itself and may not necessarily want to abort regardless of what the tests say. And then acting shocked and disapproving if parents refuse to comply.
When you are one of the people whose love is constantly questioned and challenged ("How dare you love this person? In this way?") ... when you are one of the people whose love is either outright illegal to express (how is that not political?) or else subject to other people's constant negative judgment ... not just judgment from random strangers you can ignore but judgment from your own loved ones (how ironic, that!) who you can't ... then ... even if you never wanted love to be political (because, who does?)... at some point you still have to make a choice. Do I protect myself and the person I love from the ones who doubt by hiding it, acting as if it is something to be ashamed of? Or do I simply act the same way other people who love act? Be loving toward the person I love in the same way others are loving toward their own loved ones regardless of the context, regardless of who might be watching and disapproving?
In an ideal world, no one would have to wonder. In the real world, people do.
No one chooses to politicize their own love or expression of that love. Pure love in and of itself is not political. But people believe certain kinds of love are wrong do thrust the expression of those kinds of love into the political arena, whether we want them to or not. That automatically puts our response in the political arena as well, even though I doubt there is a single person who ever wanted their (our) love to be put there.
I think P. meant to type this line with the word "not" in it (which I insert here): "Oh yes, it doesn't matter WHO makes it political but it can be political DESPITE YOUR *NOT* WANTING LOVE TO BE POLITICAL."
Precisely. It's not political just because it's opposed. It's not political because WE want it to be (because NO ONE DOES, not when it comes to their own love). It's political because there are others who force it upon us, not only by their questioning and challenging us (which is hard enough whether at home or in the press or in a political campaign) but by creating policies and standard procedures we never asked for.
By your attitude on this issue, it seems you have been privileged to never have experienced your love being depicted by others as "wrong", or targeted by campaigns to eliminate it. I suggest you may wish to educate yourself further on how others do not enjoy the same priviledge you do.
There is a slogan (from the feminist movement, I think--perhaps a more enlightened reader will, er, enlighten us), "the personal is political and the political is personal" -- or maybe it was the other way around. But when policies have a direct impact on the way we live our lives (even to the extent of dictating whom we are "allowed" to love), then how is it not political from that point on?
Andrea S.
LOVE!! Happy World Down Syndrome Day tomorrow!!
My son Trent could have been that child in the seat. When we go out to eat, he waves at every waiter, blows kisses at the tables next to us, and kisses me after each bite of food. I love the idea that someone might see us and REALIZE! Realize that love is love and Down syndrome is nothing to be afraid of.
I would love to see more employees with Ds. Most of our local adults work at Winn Dixie, Goodwill, and Salvation Army only. It would be great to see more companies willing to hire those with Ds.
Wonderful!!! You made my day!!
Wow! What a wonderful post! My daughter introduced me to this. I loved all of the comments and also watched the video done by April Vernon about her son, Levi. This entire post made my day! Thanks, Dave!
Poetic. Beautiful. And so very true!
Love this. I want to go to that restaurant, sounds like there are some nice people who go there.
Yes, whatever I meant to type, -my intent reads clearer and accurately with a NOT. We are targeted as sensitive or in the wrong when I am taken aback by my doctor's casually statement to me at my 6 week appointment after birth of a child with DS, "The GOOD news is that there is a non-invasive blood test that detects DS much earlier.". I've got a living miracle of a perfectly healthy child with DS along with me--isn't that proof of life enough? Or a mom tells me her son was not Mosaic like mine i is (he is not) cause he had DS in every cell so he would not function (poor her--her MISINFORMEd DOCTOR. Try Wikipedia! This soul was lost s in 2004!)
Dave,
Your link was sent to me by a very dear friend who has a beautiful teenage daughter with Down Syndrome. Recently I spent a wonderful day with my friend and another friend - we had all worked together - discussing our kids amongst other things. One mother has a child with Downs Syndrome - one mother has a lesbian daughter who "came out" close to twenty years ago - our mutual friend has a son who has just realised that he is gay and needs to honour his true self. Your post gave me goosebumps - it applies to all of us, as Andrea commented. I wish every parent of a child who does not fit society's "norms" in some way could read your post. I think I want to cry. Thank you.
I know you are already attached and so am I but I LOVE u Dave Hinsburger!!!!! Seriously love You! :)
Your LA admirer,
Rachel Douglas
Wow Andrea - you seemed to have made a great leap from educating me to condeming me. You have made assumptions that I have been unopposed in my life. Frankly, you have no idea. I really didn't understand the political reference in the beautiful post. I did not intend to offend. It is obviously something you feel a great deal about - considering my question was initially directed to Dave. I, personally, am not a "political animal" in that my eyes glaze over hearing about policies, etc. I know, not that civically responsible of me, but my areas of interest and methods of standing for what I feel right don't go down those roads. Again - thank you for your time.
Now that is my kind of political act. Beautiful post-
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