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.

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“Get over it”, “Just Fine”, “Normal”

I recently saw an exchange on Facebook where a preemie mom was posting facts about prematurity in support of Prematurity Awareness Month.  This particular post was around the cost of healthcare for premature children and then at the end, she posted how much money her own daughter’s medical costs have been so far.  Someone responded, “Money is nothing, be happy she’s alive”.

I have to give the original poster credit.  She nicely replied that she is, of course, happy her daughter is alive but she also felt it was important to bring awareness to the magnitude of the problem that prematurity is for all of us.  The response back was something like, “I was just trying to point out the positive :-)”

It wasn’t my post to comment on and I don’t know the circumstances of the commenter or the relationship between the two women, so I stayed quiet.  Maybe it was the, seemingly, passive aggressive use of the :-), but that comment made my blood boil.

In this blog space of mine, I do want to address my interpretation of that exchange because I think many of us preemie families have the perception that the rest of the world just wants us to “get over it”.  Once the baby is out of the hospital, and everything is “just fine” the family and the world is supposed to move on and be “normal” again.

This vent/response is for the moms and dads that are hurt every time someone makes them feel that way.

No, I’m not over “it” and here’s why;  “IT” is not over!  My days revolve around “it”.  Between tube feedings and oral feedings, I work with my son on feeding for 4-5 hours a day.   When I’m not working on feeding, I’m scheduling appointments… pulmonary, nephrology, genetics, ophthalmology, audiology, physical therapy, occupational therapy, neonatology, allergist, pediatrician and soon, we’ll be adding in speech therapy.

 

Every cold and every sniffle sends me into anxiety.  I instantly start thinking about what plans I am going to have to cancel and what is going to be impacted if we go back into the hospital.  And by hospital, I often mean the Pediatric Intensive Care Unit.  Nineteen months later and I still worry if he is going to be able to breathe on his own when he’s sick.  Nineteen months later and I’m still lugging around oxygen tanks and monitors and tripping over cords because he needs breathing support.

 

Yes, he is alive and I am so thankful for that.  However, I’m not sure which parts of “Medically Fragile” and “Failure to Thrive” fall into the “just fine” category.  The fact is Owen is better than he was and, in many ways, exceeding expectations, but there is a long way to go to get to “just fine”.

 

And then there is the most hated word of all.  “Normal”.  I’m not 100% sure what “normal” means, but I do know Owen’s course isn’t it.  He’s not had a typical course and so far, his outcomes are not that of a typical child his age.  He is different and it’s my job to prepare him to navigate these differences.

 

So far, I really think most people understand the Owen piece. However, what onlookers have a harder time understanding is why the rest of us aren’t our “normal” selves anymore.  Let me just put it out there really, really simply.  I will NEVER be the same person I was before Owen was born.  95% of the ways that I have changed are for the better.  I’m a more balanced, empathetic, appreciative and kind person.  The other 5% are the memories of fear, helplessness and devastation of spending 181 days in a place where babies – very real babies, not just babies I’ve read about in the newspaper, friends’ babies and nearly my baby – die.  You see, in my old “normal” world, babies didn’t die.  In my new world, I think about those that were lost every day.  I’m no longer naive to the true pain that is in the world.  I’ve felt it and the scars still ache.  I’m prepared for them to always ache.

 

So yes, I have changed and I am moving forward from where I was, but I will not forget.  I won’t forget for myself, or my family, because with the pain, came so many wonderful things.  I also won’t forget because there are new families going through it today and more families will go through it tomorrow.  When it seems like I’m dwelling on the negative, please keep in mind that it’s not about being negative and not being able to move forward.  Prematurity awareness is about reality.  It’s the reality for 12% of births!  Sharing knowledge is not being negative.  It’s about wanting to do something – anything – to help others never have to feel it.

Ahh, that felt good to get off my chest.  What do you have to get off your chest today?

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