Monday, February 20, 2017

Letter To A Mother of Child Born with Treacher Collins Syndrome

By Kristin Bartzokis

Kristin Bartzokis is an athlete, artist, and writer.  She was born with Treacher Collins syndrome and documents her life experiences in her blog Diary of a Beautiful Disaster.  Her first book, also titled Diary of a Beautiful Disaster, releases March 21, 2017.  You can preorder it here

This letter goes out to any mother, who has just given birth, and is forced to make the instantaneous decision to keep an imperfect child.  It was inspired by an article I read about a biological mother deciding to keep her baby born with Treacher Collins Syndrome instead of giving her up for adoption as originally planned.  This left me wondering how many babies have been born imperfect and unwanted.  I was born to, and raised by, very loving parents, but I recognize that not everyone is as lucky.  In some cases, biological parents see an abnormality as a burden and decide to place their newborn baby up for adoption.  In other cases, soon-to-be adoptive parents back out of the adoption for the very same reason.  These instances might not be regular occurrences, but still, they happen.  The article I read reiterated how incredibly lucky I was to have my family, and my heart hurt when I realized that not all children grow up with the same kind of unconditional love that I enjoyed.  I decided I needed to use my strongest voice, my writing, to illustrate the importance of keeping, raising, and loving a baby born with imperfections.  (I think it is important to note that I do recognize that not everybody has the financial stability needed to care for, or raise, a child with a craniofacial abnormality.  This letter was not directed at those families, but rather the ones who simply didn’t want an imperfect child.)

To the mother of any baby abandoned by her biological or adoptive parents, because she was born with Treacher Collins Syndrome:

I’d like to say thank you for keeping this baby when the other parents hightailed it at the first sign of abnormality. Treacher Collins Syndrome is not a curse. It may turn your reality upside down a time or two, and bring you moments of heartbreak and tears, but what life doesn’t promise this?

In truth, this child is much better off with you than with the potential family that abandoned her because of her looks. By deciding to keep this child with her obvious anomaly, it shows you embody compassion and strength. Only the weak would choose to cower in fear of the imperfect. Your baby does not need such weakness; she needs your strength. She needs to grow up believing in endless possibilities. She needs to be raised in an environment that won’t judge her with one glance. She needs to learn never to make excuses for why she can’t do something, because there will never be a valid reason. Her facial anomaly creates a physical difference, but her heart, mind, and soul offer complete normalcy.

You will endure some trying times. Should you choose the path of reconstructive surgeries, your heart will break for her, but don’t ever leave her side. She’ll need your strength. She’ll feed off of it. She’ll embody it. Surgeries will swiftly become distant memories, and 33 years later you’ll be penning a letter to some complete stranger who chose to accept Treacher Collins with open arms. Thank you for the reminder that my flaws are only flaws if I see them as such.

This is my advice for you: be the best parent you can be, treat your daughter as if she were any other child, and help her grow into the same compassionate individual who would lovingly welcome an abandoned infant.

Treacher Collins Syndrome is not the end-all-be-all. Trust me, I know first hand. Like me, your daughter is fully capable of living an extraordinary life! Never doubt this. Treacher Collins may not be everyone’s normal, but it is now your normal. Welcome it. Embrace it. Own it. And never quit helping your child show the world the beauty of a facial abnormality.

All the best,

Editor's Note: This is one article which highlights the situation the author mentions:

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