A by-product of that initial vision has been cleft-awareness, even if only on a very small scale.
I have quite a few people that find my blog through internet searches like "cleft lip and palate" or "expecting a baby with a cleft."
I think every shocked, expectant cleft parent types those words into a search engine.
My heart goes out to them.
I remember doing those searches.
And I remember some of the results I wish I hadn't found.
When people stumble upon my blog, I am glad. I hope they can see from my blog that Bailey's cleft is not our primary focus - on the blog or otherwise. I have general information about clefts with a few helpful links in the Cleft Info tab at the top of my blog, along with an overview of Bailey's story, surgery, and future concerns. I write posts from time to time about what is going on in regards to her cleft: her yearly cleft team visits, trips to the dentist, questions she asks as she notices some of her differences. Those posts help explain in detail what exactly we learn at each visit and give a general timeline for what to expect in each next step.
What is not found on my blog?
A sense that Bailey's cleft is an overwhelming part of our lives.
And it never will be.
I guarantee it.
Because when it comes down to it, Bailey is more than a cleft-affected kid.
She is our daughter.
She is funny.
She is smart.
She is caring.
She is helpful.
She is exuberant.
She is beautiful.
Oh, and she happens to have a cleft.
And because of Bailey's cleft we were automatically joined into a small sub-group of people: cleft parents. I've met and formed relationships with people I would have otherwise never known - all because we have a cleft in common. I even email back and forth with an adult woman with a cleft. She gives me the viewpoint that I wouldn't glimpse into otherwise.
I like being a resource or a touch-stone to others experiencing the same things we have already gone through. Clearly I am not an expert, but I have been-there-done-that with a lot of things cleft-parent related.
I like when people - family, friends, strangers on the street, internet strangers - ask me questions and show they are interested in knowing more. I like to share the knowledge I've gleaned from personal experience.
But there is a definite difference between asking questions to learn more and asking questions to challenge the choices we have made for our child.
Let me be extremely clear:
I love my daughter.
I've thought she was beautiful from the second I laid eyes on her in that operating room.
My heart hurt knowing that we had to lose her sweet "first" smile at 10 weeks old.
And it ached afterward seeing her in pain.
It's ached with each and every surgery.
And I know it will ache thousands of times more in the upcoming years, over all sorts of normal childhood things and a few extra because of issues related to her cleft.
But never have our choices for Bailey been guided by superficial thoughts to "make her prettier" or because we feel she isn't good enough as she is right now. And to say or infer that to me is not only inappropriate, it's offensive.
We don't look at Bailey and notice her cleft.
Her cleft barely crosses my mind, and it usually only does in fleeting moments, like when I am brushing her "special tooth" or notice she has chocolate pudding hiding out in her right nostril.
Vanity is not guiding our decisions.Just like with our other children, we make decisions for her based on what is best for her. And we make decisions regarding her cleft-related care with her team of specialty doctors, dentists, and orthodontists. Ya know, experts. And I feel very strongly that they have our daughter's best interests in mind as well.
It's okay for people to have questions. I expect that. I don't expect people to understand it all; I knew nothing about clefts before Bailey was diagnosed with one. I am happy to explain why Bailey has to have more surgeries and dental work in the future.
But suggestions that we "think long and hard about the motivation for her surgeries" and "start embracing Bailey and her differences" are absolute bullshit.
Should we say screw it and let her breathing be affected due to her nasal shape as she grows older?
Should we just not utilize the AMAZING health care coverage my husband receives as a benefit through his job?
Surgeries aren't being done just for looks. Surgeries are needed for function and to prevent problems with biting, chewing, swallowing, talking, breathing...
So insinuating that Bailey's future surgeries are less about necessity and more about my own tainted view of real beauty is just not even close to reality.
Look at this picture and tell me our daughter isn't beautiful.
Because for those of us who truly know and love Bailey,
we don't say, "She is beautiful even with her cleft."
We just say, "She is beautiful."