Help me Cure Pity

I’ll never forget the first time I felt it. It was one of Owen’s first outings. We were at the neighborhood grocery store. He was in his car seat, clipped into the stroller and facing me. An employee was walking towards us and her face broke into a grin. She was excited to see a baby was in the store. “Oh” she exclaimed with joy… and as she got to where she could see him with his nasal cannulas and head shaping helmet, her excited “oh!” turned to “ooh” with a frown.

My heart sank.

She clearly didn’t see the beautiful fighter that overcame so much to be there that day. Instead, she saw what Owen wasn’t and she felt bad for what he wasn’t.

I don’t know, if on that day, I was able to articulate that it was pity that she was expressing, but I know I didn’t like the way it felt to see my son be the recipient of it. I was relieved that he was too young to see her looks of concern and feel her focus on what he wasn’t.

It’s important to acknowledge, I’m confident that this woman didn’t intend to hurt my feelings or belittle Owen. I have a feeling if I had politely let her know, she would have been honestly and profusely sorry. Instead of saying something to her, I walked away and chalked it up as our first lesson in what many special needs families have learned ahead of us; all too often the attitude in our society is to focus on what people can’t do, rather than what they can do. And the overwhelming response to what someone can’t do is, “it’s such a pity.”

Pity is exactly what Owen does not need – it will not help him. Instead, pity will enable Owen to feel bad about his circumstances. Pity will give Owen an excuse to give up when life gets hard. Pity will be a constant reminder to Owen that he is different – that, to some, he’s not “good enough”. Pity will prevent Owen from being all that he is.

Instead of pity, what Owen needs is empowerment. He needs to be empowered with the attitude that his being born a mircro preemie who has chronic lung diseases and brain injuries is not an excuse for him to not fulfill his dreams. Empowerment is given through a combination of hope, expert care and a world that gives him a chance.

We are very fortunate to live in a metropolitan that makes it relatively easy to get expert care. Minneapolis / St Paul has three nationally ranked children’s hospital systems; University of Minnesota Amplatz, Gillette Children’s Specialty Healthcare and Children’s Hospital and Clinics of Minnesota. Each of these systems works collaboratively and provides care for Owen. Gillette, the nation’s first hospital for children who have disabilities, has an office less than five miles from our house where Owen has therapy that empowers him.

Hope is another component to Owen’s empowerment that comes easily to him. He doesn’t know what he doesn’t have, but he has an innate drive to get what he wants. Owen’s is an attitude that fills many of us with hope.

If there is one thing that worries me most about Owen’s future it’s if he’s going to grow up in a world that gives him a chance – a world without pity. When Owen’s been able to go out, the looks of pity have been prolific. I know for Owen, and all of his preemie and special needs friends, to have their best chances, we need to help people understand that their pity hurts. We need to provide ways to let the world know that solutions, not pity, are needed.

It’s the moment in the grocery store, and the many similar experiences we’ve had since, that made the CurePity movement resonate so strongly with me. Championed by Gillette Children’s Specialty Healthcare, CurePity is a campaign that asks the world to sign a pledge promising to reject pity and to take action to improve the lives and health of children with disabilities.

I signed the pledge because what Owen can do is greater than what he can’t do. I am choosing to empower, not pity, my son and all children with disabilities.

You probably already know Owen’s story.

There is also Logan’s story.

And Lexi’s Story.

I bet you have some stories of your own too.

Won’t you please, take one minute to sign the CurePity Pledge? It doesn’t matter where you live, CurePity isn’t about one hospital system in Minnesota. CurePity is about an attitude of rejecting pity in our society and fighting to establish and protect the rights of people with disabilities. It’s about giving our children a world that sees what they are, not what they are not.


© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

13 thoughts on “Help me Cure Pity

  1. I could not agree more! I am totally on board. My boys are being raised with the knowledge that they are stronger because of their fighting start. No matter what future challenges we face. And little men like Owen, with his ever-charming smile, are proof of the joy a “new normal” can bring to us all.

  2. Love, love, love this post! Thank you for writing this. We were at a holiday party this past Saturday and we let Jackson down on the ground to scoot around on his butt. He cant walk but he sure can get around on his butt and we should never feel bad about letting him explore his surroundings! I too felt the pity pouring out from some of the other parents we didn’t know well. Just the looks on their faces saud it all. Thank you again for posting this! Gillette has such an awesome mission and you articulated it so well in your post!

  3. Being a momma to a child that had to be on oxygen for almost two years I can totally relate to this post. For the first four months of his life he was in the NICU. Unlike other families that get to bring their babies home right away and show them off out in public the only way we were able to show people our son were pictures we had of him on our cell phone. We would get saddened looks back at us because he was so little, hooked up to tons of tubes and machines. Then once we brought him home we hardly ever took him anywhere other than to his doctors appointments and most people their had sick children themselves that were on oxygen. However when we were able to take him out to more public places we would get tons of stares! I even had one lady ask if my son was dying. I can remember that comment just like it was yesterday and the feeling it gave me.

    I wanted to share our son with the world just like any other Mother would and a lot of times the joy was taken away and I was reminded once again that our son was on oxygen when I would just look at him as our precious little boy. So thank you so much for writing this post. The only reason I have looked at Owen an have seen his cannulas is because I can relate and the business I run but I have never felt sorry for him. When I look at Owen I see the amazing, handsome young boy behind that silly old tubing that is going to take on the world just like my little red head has done. I will be making my pledge!

    • Michelle, your sons story is such an inspirational one. I remember when I first heard his story thinking, we’d never see two years on oxygen…but now it looks like we will. I appreciate having other moms ahead of me who have been there. Also, thank you for starting Busy Breathers to bring awareness to Oxygen use and for solving a very real need. Thank you for your pledge and sharing this post.

  4. Lexi, Logan, Owen, Jack, and the many other young lives that have had so many struggles too early in life are amazing fighters that deserve our awe, praise, and admiration. These little miracles enhance and inspire the life’s of everyone they touch. Our babies deserve super hero capes to wear on their backs- we should all aspire to work to be as amazing these little ones.

  5. My almost 23 year old son wore a full milwaukee back brace during his middle school and high school years. He went from an being an outgoing leader in elementary school to a quiet withdrawn boy immersed in video games. Now? He graduated from college in the spring, serving his senior year as student body president. He is currently in graduate school. As hard as those years were, I believe those struggles are what made him the man he is today. Gillette Children’s was such a part of our lives for so many years. btw- When I see an infant with a helmet and tubes, I see a child who is growing just like any other child.

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