Saturday, May 12, 2012

Thankful for the Haters

Yesterday I shared a link on my Facebook page from my one of my favorite blogger friends, Deanna. She writes an amazing blog over at Everything and Nothing From Essex that I am creepily obsessed with really like reading when I have time. I hesitate to share this with you because some of you seem to be under the misguided impression that I am a talented writer.. yet I know that once you read her blog, you will see... "It's like a postcard from Paris, when you've seen the real thing..." Thank you 'The Band Perry'

BUT I decided this topic was much more important than the potential scarring of my fragile ego, so here goes...

Her blog was titled "Society Blind To Beauty?"

If you haven't read it yet, you need to go read it. Like now. But please come back here again to my way-under-her-par writing-style-measly-blog to at least finish reading this post........ pretty please?

Anyways, for all you rebels who chose not to heed my advice to actually go visit her blog, or those of you with a short memory span.. Her blog was about the "Mother's Inspiring Video About Her Blind Baby Boy." I saw that video posted all over Facebook the other day, but hadn't taken the time to watch it. Until yesterday.

What a beautiful story of love and life and faith... Like Deanna, I was "inspired, amazed and thankful." I, too, watched with tears streaming down my cheeks, knowing all too well what emotional, heart-wrenching pain this mother has gone through in order to arrive at this point of humble and admirable strength.

The thought that someone could watch this video and NOT feel those things must affirm my sheltered Nebraska farm girl naivety...

There were, of course, many wonderful, encouraging comments for this lovely mother, but there were also many hateful comments. And the hateful comments that people had posted about this video were horrendous.

The fact that someone could actually have the brazenness to post on this extraordinary mother's video that her baby should have been aborted, that it should be killed, that he will be judged as an eyeless freak his whole life, and what a burden he will be to society... is so so awful beyond words.

I honestly don't know if anyone who reads this blog has any of these same hateful thoughts (I sure hope not..) But if there is, I would say to you who think people with disabilities are unsuitable for living, a burden to society and should not be given the chance at life:

   1. I would say I'm sorry. I'm truly sorry for your small mindset, for your small heart, for your small amount of compassion. I'm sorry that you've never had the wonderful experience of being around a special needs child, or adult for that matter. I'm sorry that you have never experienced the unconditional love, the pure joy, the true meaning of life. I'm sorry that you do have all the correct genetic information that allows you to "fit in" with society that so many others don't have, yet you are obviously the one who is truly missing out on what this life has to offer.

   2. I want to thank you. Thank you for inspiring me to love my daughter on an entirely new level.. Not in spite of how she was made, but because of how she was so uniquely, beautifully and wonderfully made. Thank you for encouraging me to be the absolute strongest advocate for her in this corrupt world. I am so saddened for the stereotypes, the judgement, the hate she may face in her life from people like you, but I am so thankful and humbled for the opportunities that she alone will have, to change opinions and attitudes.

  3. Thank you also for reminding me how important the many wonderful people we have in our lives are. I am so grateful for the loving friends and family that support us emotionally and love and care for our sweet Ella girl, who have been with us through our lowest lows and our highest highs. Thank you for reminding me what an amazing and welcoming community we live in.

Honestly, there still are many times I struggle with Ella's diagnosis, with her being "developmentally delayed." There are times I wish she would have been born "normal". Times I wish she were any other 16 month old girl, walking, talking, only visited by one doctor.. Times I wish the letters CdLS didn't mean anything more to me than some randomly placed letters of the alphabet.

There have been times I wondered what the purpose of her life would be.. if she could not go to college? get married? own a house? I've cried buckets over the things I may never get to do with her-help her get ready for her first date, shop for a wedding dress, share family recipes over a cup of coffee..

I am ashamed to admit that I too, have at times succumbed to society's shallow definition of a successful life, thinking that the only life worth living is the one where you are driving your hybrid SUV, carrying your genetically flawless 2.5 children to your house in the suburbs. Having a child with special needs does not automatically make you immune to these feelings. Instead, it makes you so much more aware that you do indeed have them. It forces you to confront them, to look at prejudices you have that you never wanted to see about yourself in the first place, to confront emotions that would be much easier keeping tucked away, just beneath the surface.

I have come a long way in subjectively challenging society's view of life. And if my beautiful daughter can impact just one person's negative way of thinking, if her life can challenge society and alter opinions on what is truly beautiful and worthwhile, then her life will have served a purpose far loftier than mine ever has, genetic "defects" and all.

Is having a special needs child hard? Yes.
Do I wish she hadn't been born into our family? No.

While sometimes I do find myself yearning for the "easy" days of parenting, the days of a typically developing 16 month old baby, the days I didn't know the difference between an NG and an NJ tube, the days where medication was reserved for minor colds... I am honored God chose me to bring to life and nurture this precious gift. What if she would have been put in a family who would have terminated the pregnancy at the first signs of "abnormalities" like so many do?

This world would surely be a little less bright.

I believe our special children serve a special purpose. Thank you, hateful anonymous commenters, who have inspired me to grow in my faith, and for strengthening my belief that our ultimate goal in life is NOT to merely "fit in".

On a side note, today is National Cornelia deLange Syndrome (CdLS) Awareness Day, the syndrome my sweet Ella has. You can show support by educating yourself and others about this little known genetic disorder. Check out to see how you can help.

While I admit, these 4 little letters were something I've often wished I could go back to not knowing anything about, I am amazed at how much I have learned about life these past few months. Not about 'life' to fit in with society, not about 'life' and ways to be successful, not about 'life' to aspire to be the most genetically perfect specimen. But 'life' in living to the fullest, 'life' in connecting with many from all walks of life, 'life' in trying to leave this world a little more accepting place than it was before.

Thank you.


  1. I love this post so much! (and not just because of the shout out hehe) Your very well articulated response was amazingly honest and refreshing to hear. YES! The haters should make us thankful. Great post!

  2. and you are WAY too hard on yourself! You're an incredible writer!

  3. Wonderfully written! AMEN! :) Thanks for sharing!

  4. I think you did a great job with the writing. Thanks to Deanna for sending me your direction. Until now, I had never heard of CdLS, but I followed the link and am now aware. I am amazed at the strength and love you have for your baby, it shows in your writing. Thanks to you and the others for putting into words what many of us are thinking.

    1. thank you so much! i am excited and humbled to be making a small difference in this world..

  5. If only the "haters" out there could feel the truest of love that exists--that given by God. If they could feel His unrelenting forgiveness and compassion, maybe it would touch their hearts to know that they are not perfect according to society, but are perfect in God's eyes.
    And I love Deanna's comment about God's "unique design." Science believes these differences are due to genetic changes by chance; religion believes these differences are for a greater purpose.