And the horse they rode in on.

We throw the term “quality of life” around a lot. But what does it mean?

I’ll tell you. And if you don’t agree, come stay at my house for a little while. It will convince you I’m right.

Quality of life is finding joy and purpose in the ordinary. It’s waking up every day excited to be alive. Ready to do what you love. Feeling purpose. Feeling content.

It’s feeding your passion. Even if you are still looking for it.

It’s finding happiness in the people that surround you. It’s different for every person, but we all have the potential to have a beautiful quality of life.

Sometimes we may have trouble feeling happy, and enjoying life. It may take something extraordinary to give us a little push in the right direction.

That’s where Grant comes in. He has much to teach us about this. He has found his many passions, and he wakes up every morning excited for the day. When he discovered art at age 4, he found his passion and reason for living, and scotch taped it all over his beautiful little soul.

Our respite provider, James, says it is impossible to not be happy around Grant. He literally squeals with happiness sometimes. I love that sound. It is like a giggle and a squeal that bubbles up from his precious little heart. He is so alive and present. He just is.

But some may not understand that he does, in fact, have an amazing quality of life. They may feel because he is “mildly to moderately mentally handicapped” that he isn’t capable of that.

They would be wrong.

It is just a stupid label, in a world full of stupid labels. Like, for example, “retarded.”

This blog post is my emotional outpouring after reading something that really upset me, and made me think hard about the definition of quality of life. A three-year-old child named Mia was denied a life-saving organ transplant because of her label. A label of “mentally retarded.” Which supposedly reduced her quality of life.

I want to clarify that it is the viewpoint of her parents that this was the reason she was denied. I was not there, and I don’t know the details of the situation. I very much understand and acknowledge that the selection process for a transplant is very complex. Also, I acknowledge that a transplant itself is no easy thing, especially for someone who already has health challenges.

It is also important to me to say, for the sake of fairness, that I cannot imagine pediatric healthcare providers taking such a stance. In my very vast experience of nearly every pediatric specialty, these individuals have a calling to care for children. And they find joy and wonder in every child, no matter their abilities.

Before I go on, I want to provide you the link to Mia’s story. If you google it, you will likely find many, many articles. Her story went viral. Here is another link from a news station that includes the hospital’s response.

I will leave it to you to form your own thoughts and opinions.

But here is mine: if Mia’s care team even factored in her mental disability when denying her a transplant, it is despicable. From all I have read, Mia had much joy in her life, and without a doubt brought much joy to her family.

And that is where quality of life comes into play. Who is to say that Mia had a lower quality of life, than, for example, someone without a mental disability? Isn’t that basically saying that happiness is only reached if an individual meets society’s standard of “intelligence?”

Horseshit.

But I do want to clarify something else here. I don’t feel that “labels” are all bad. These diagnoses are crucial for several reasons. When you know your child’s diagnosis, for example, it can help you find resources for support. It helps you connect with other parents, and better understand your child’s challenges and leads you to ideas to help your child overcome those challenges. Diagnoses help early interventional therapies be more successful, because they provide more information to your child’s care team. I know this firsthand, as we didn’t have a diagnosis for Grant for the first 13 months of his life.

These positives should not be underestimated.

But that is where the value ends. A label can’t define you. Or your child. And it sure can’t stop you from finding your joy. Your passion. Your happiness. Your quality of life.

Those that think otherwise?

Fuck ‘em.

And the horse they rode in on.

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3 thoughts on “And the horse they rode in on.

  1. This is a very delicate issue, every child has the right to a full life, to live with no tags applied to them. It would be very difficult to be the persons who have to make the big decisions as to who to or not. Saying that I don’t know what the options are as far as decisions are made as to who is eligible or not. Those would be very painful decisions for sure. My Grandson Grant is autistic and he is a delightful fellow now whose history of a disability should not ever be used to prevent him from being who he is and being happy. We all do the best we can and that is about all we can ask. of ourselves. .God help those who have to make those difficult decisions.

  2. I have read both sides of “Mia’s” story..and I am outraged and horrified! I am apalled that the word “retarded” is used outside the halls of an elementary, let alone by highly educated health care professionals! This just further shows the “God-like” complex of some of our health care providers. They have the ability to give this young child a longer shot at life and are choosing not to, and why? In their minds do they feel she will never become a contributing member of society? Well, I am exposed to teenagers all the time with no diagnosed disabilities, and wonder if they will be contributing members either?! I have been blessed to have Grant in my life for about 10 yrs now, and know that I myself am a better person because of it! “Mia’s” people I’m sure feel the same way about her.

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