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When My Son's Down Syndrome Diagnosis Went Viral

Recently a friend of mine wrote a letter to her doctor, who had pressured her into considering having an abortion when she found out her now 15-month-old daughter would be born with Down syndrome.

In the beginning of her letter to her doctor, she shared my diagnosis story from when I found out my son would be born with Down Syndrome. She wrote :

Dear Doctor,

A friend recently told me of when her prenatal specialist would see her child during her sonograms, he would comment, “He’s perfect.” Once her son was born with Down syndrome, she visited that same doctor. He looked at her little boy and said, “I told you. He’s perfect.”

I’m here to tell the world just how perfect my son and everyone else with a disability is. If you search for the definition of “perfect” the internet , you find the following:

perfect definiton reading: having no mistakes or flaws, completely correct or accurate

After reading those definitions, I want you to ask yourself: “Am I perfect?” 

I have a feeling your answer is no. Because no one is perfect, but that doesn’t mean we don’t all deserve respect. I told myself I wasn’t going to read the hateful and ignorant comments on social media when my friend’s letter went viral. I told myself there will always be Facebook trolls and people who get a rise in making others hurt. I guess I had hoped this time it would be different, but man was I wrong!

hurtful comment about down syndrome

That comment read:

A child with Down’s syndrome is not physically “perfect”…and I don’t think a dr should be made to feel that he or she should relate this news in that light…Especially since it is the Drs job to provide facts and options. I wouldn’t want my dr to be “politically correct” when discussing my baby’s condition. Ultimately, the best can be made in any situation and nobody is perfect but that’s for the parent or individual to conclude after receiving the facts…not before.

Now of course, I won’t show the lack of disrespect this person showed by naming names, but I will say this…

There are too many people in this world with misconceptions about Down syndrome and what it means for our children living with it. I honestly put a lot of the blame on the medical community. They still focus so much on explaining all the negative things your baby will be born with or go through, and it makes these moms believe their babies will grow up to amount to nothing. Then we have people in the world so intolerant to other people’s differences, they don’t let themselves see how people with Down syndrome or any type of disability are just that, people.

asher at 8 months
Crystal Barbee Photography

Recently a friend told me her thoughts on the subject ,and she could not be more right. She said:

Our hope is that the world will eventually see that our children are beautiful, loving humans who want what every single person wants…love and acceptance. The only real difference is that our children will love and accept those who believe their lives don’t matter and ask for no love in return. They don’t take away from or drain their family, nor do they make us regret them. Instead they teach us what is truly important in life and we become better people because of them.

For those of you who don’t know, Down syndrome, also known as Trisomy 21, is an extra copy of the 21st chromosome. This extra genetic material manifests itself in a number of ways. What does that mean for my son Asher? It means he has Down syndrome, but he doesn’t have every single characteristic of Down syndrome. He has his own physical features, likes and dislikes, strengths and weaknesses and traits that also make him unique.

asher smiling
Crystal Barbee Photography

My son will have his struggles, but don’t we all? Don’t we all struggle with some sort of imperfection? Isn’t that what makes us all different and unique in our own ways? He is still an individual, just like everyone else. Down syndrome is only a piece of who he is, and it will not define him. We will not write his future for him and neither will this society. Together we can spread awareness so more people realize the truth about our children, relatives and friends living with Down syndrome.

So if I leave you with anything, I want you to remember this. Please do not ever think that someone is not “physically perfect” because of their chromosomal makeup. Who are we to say what’s perfect in this messed up world we live in? In my opinion, there is only one man who is perfect and only he has the ability to judge our imperfections in these temporary bodies he created for us. He does not mess up, make mistakes or give us more than we can handle.

Asher might not be perfect in the eyes of society, but he’s Down Right Perfect in mine. I invite you all to follow his life journey and mine as his advocate. To learn more about him and his abundant life, click here.

This post first appeared on My Atlanta Moms Club.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s). Check out our Submit a Story page for more about our submission guidelines.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

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