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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Sunday, July 19, 2009

No Pity Rarty Please

I have been putting off writing a post in response to some comments that we have received over the past 5 years, when strangers first meet Timmy. There was an incident that happened yesterday that has driven me to go ahead and write.

Family members whom I have not seen in over 20 years, saw Timmy for the first time yesterday. Their first response to him was "Oh poor Timmy! He's so pitiful! I just want to cry..." What's "poor" or "pitiful" about him? Does he really strike you as a child that you should feel sorry for? Do you think that he should be "pitied" because he is different? Because he can't function physically and mentally like others? Before coming to the conclusion that my son deserves to have your sympathy, I ask that you get to know him. Then let me ask YOU, Do you see a “poor” or "pitiful" child when you look at Timmy?

When I look at Timmy, I see NOTHING "poor" or "pitiful" about him. I see a child who is HAPPY all the time. I see a little boy who knows that he is the center of his parent's world. I see a child who plays, laughs, loves and cries. I see a child who has distinct likes and dislikes. I see a little boy who likes to play with other children. I see a little boy who likes to play rough, like other children his age. I see a child who is eager and willing to try new experiences. I see a little boy who loves to be the center of attention when in a group. I see a child who is able to express his needs and wants, without uttering a single word.

Just because Timmy can't stand alone, can't walk independantly, can't talk, can't see and can't hear the world around him. Does this alone mean that he is less of a Human Being, who deserves to be pitied??? Because far above and beyond, he is a HUMAN BEING. A person who has feelings, feelings of joy and sadness, anxiety and pain, fear and love for others. And a "real" living person who needs understanding, love, and the opportunity to interact with other people.

Dispite Timmy's differences and limitations, he is what any parent "wants" in a child, for their child to be happy and healthy. Timmy is happy, he is healthy. Timmy likes to play with toys. Some of his toys may have to be adapted or more developmentally age approperate, but still Timmy CAN and DOES play with toys. There are times like any other child, Timmy will get sick. But we don't treat his illnesses any differently than any other parent would treat their child's illnesses. We take Timmy to the doctor. We give Timmy mediations to help make him feel better. And we nurture him through his illness until he is better.

Please don't pitty my son. Please don't assume that any child or an adult who has special needs deserves to be pitied. Open your eyes. Open your heart. Look at the individual for whom they "really" are. You will soon discover that with every breath they take they are saying to you; It is ok to be different. It is ok that I have limitations. I am happy! I am ME!

What else in life are we "really" seeking for our children and for ourselves? Happiness. The reason we do the things that we do in our lives is, because they make us happy. That is why we take walks along the beach at sunset. That is why we play tag with our children. That is why we eat chocolate or drink coffee. That is why we go for a swim or get a nice massage. WHY??? Because all of these things make us happy.

Now tell me does this look like a "poor" or "pitiful" child???


Michelle said...

You're right, what is to pity?! He is who God made him to be. And what a boy he is! (I especially love the tractor pictures.) We've been there also with Emily, and with those who don't know her. Just plug your ears and hum a little tune while they pity their own lack of intelligence.

ANewKindOfPerfect said...

I just found your blog, from The Tender Scribe blog. I read a lot of your old posts, and I really enjoy it. You have such great love and acceptance of your son. I often tell people "Really, does my daughter LOOK like she is sad? Does she LOOK like she needs your pity?"

Well spoken. :)

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