So far a few things stand out about my public interactions with people when they see baby John. Noone says "oh how cute!". It's either, "Oh that's a mad baby" when he's crying, or else "Oh that's a young one" since he's still obviously an infant. But almost noone comments about his cleft- except my fabulous veterinarian, who was very sensitive and friendly asking about it.
But this has been part of my education. All I knew about our little bundle of joy before he arrived was that this baby was going to teach me a lot. So far he has guided me to explore my spirituality, and now of course he is letting me experience what it's like when you are different from everyone else.
Not that I want to make his cleft a big deal, or tell every stranger I talk to that he can breastfeed like a champ! But all those "normal", "common" statements people make about babies, and the "normal", "common" pictures people share OF their babies with others... so far that's not what it's like for us.
Of course finding out that our baby has a cleft lip was a shock. But honestly I would not have wanted to know about it ahead of time. It would have done me no good, especially knowing me! I would have worried so much! Really, I still got everything I wanted! A natural vaginal birth, and I can breastfeed my baby! My baby is healthy and strong -what a gift! We're just on a new journey now, as a family!
Thank you Renee for loving your little brother so much! You are such a loving and caring child!
And thank you John Carl for teaching us so much and for being a part of our family! You have already brought important new friends into our lives- just because of you! Our amazing doulas. Our supportive birth community through the childbirth classes we took. And Miriam, our primary doula, introduced us to another family with a little boy who had a cleft lip and cleft palate surgery. We'll be getting together with them in a few weeks to talk about what it's like to have a child with a cleft. Just being able to reach out to others and talk about this, to get an idea of what will come- this will be a huge emotional boost for us! How wonderful to bring all these amazing people into our lives! What a powerful little boy we seem to have!
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.