Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Perfection and Perspective

If there’s one thing I wish I had been told when Sarah was diagnosed with Down Syndrome, it would be that ignorant people are everywhere and that their ignorance is the gift that just keeps on giving.

What I was told was that all parents of children with special needs go through grief, and then acceptance. This was true for me. But what I wasn’t told was that the grief doesn’t just pass…it comes in waves, cycles, blocks. And that it’s triggered by the words and actions of others.

There was a topic on my debate board today about the perfection of children with special needs, and whether parents of children with special needs were in denial that their child had a problem if they thought their child was perfect. And it hurt. More than it should have. More than the endless posts about abortion for Down Syndrome or eliminating Down Syndrome entirely (which is another post for another time). Because it brought along another phase of grief.

One of the things I worried most about when Sarah was diagnosed was how I would see her. Was I going to be able to love her as much? Would I get to experience that parental euphoria that I’d heard so much about, where you are completely head over heels in love and you think your baby hung the moon? The answer, it turned out, would be yes…with conditions.

I do think Sarah is perfect. That is, I do think Sarah is perfect to me. There is, in my eyes, nothing wrong with her. She is healthy. She is beautiful. She is intelligent. If I was given the opportunity I would not change a single thing about her, because Sarah does not suffer for being Sarah.

But there is a certain percentage of the population–a certain vocal percentage of the population–thinks that I have no right to feel that way. They feel that there is something wrong with her, and that I’m just in denial.

But I’m not. I just have a leg up on the rest of the population in that I no longer strive for “perfection”, because I am able to put Sarah’s Down Syndrome into perspective and know that it’s not the end of the world. That in her own way, she really IS perfect, and that she can still live a full and happy life–perhaps even a fuller, happier life–without her extra chromosome standing in the way.

Are there certain disabilities and medical conditions I wish I could cure? Absolutely. And again, that’s another post for another time. But having a disability is not necessarily a death sentence. It is not necessarily a blight. And I feel that above all, for those disabilities, we should be focusing on acceptance, not eradication. Because not only is human perfection unattainable, but because there’s nothing “wrong” with having Down Syndrome. There should be no shame in loving your child for exactly who they are if exactly who they are doesn’t hurt them in any other way.

From this day forward, I am going to make a promise to myself to never be ashamed of Sarah or my love for Sarah. I am never going to let people tell me that I should feel any way but unconditionally loving toward my child. I wouldn’t want to change her if she had blond hair instead of brown hair or green eyes instead of blue eyes, so why should I want to change her because she has 47 chromosomes instead of 46?


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3 thoughts on “Perfection and Perspective

  1. You are so right! There is no such thing as human perfection so why in the world should our children be considered less “perfect” because of an additional chromosome? I have three children and they are all different and they all have their strengths and weaknesses. They are all “perfect” in my eyes, but equally imperfect by true definition. I’m glad you started a blog, I’ve been following your posts about Sarah since she was born 🙂

  2. I just found this when I saw that you posted on The Debate Team. Your story about your new life and Sarah’s new life brought tears to my eyes…happy tears. Sarah is extremely lucky to have 2 amazing dads in her life. You truly inspire me. People take so much for granted in life, and it’s nice to be reminded to take everything one step at a time and enjoy every single moment.

    I wish you and your family the very best of luck…I look forward to reading more!

  3. Great perspective you have Christopher. I love when I see you post on the DT when debates like what you mentioned come up. I see that stuff and think ‘where’s Christopher!?’
    Your daughter is perfect.

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