Saturday, March 14, 2009
A burning question.
I can't see the answer clearly because I'm blinded by love and devotion.
Something I wonder each and every day, every time a person looks at my family.
Can ya tell Zachary had a severe bilateral cleft lip and palate?
Can ya tell Jeremy had a mild one? Do people look at my children and wonder what is wrong with them? Do they even notice?
I have a double stroller with two babies and another kid standing in the middle of the two. And Zachary. His hair is like a spotlight!!! It's beyond blonde, it's almost white. It's next to impossible to discreetly go anywhere. People look. They stop to talk sometimes. I can talk the brass off a knob so I "talk" to everyone. I see them as they look at Zachary. That's when the dialogue that comes out of my mouth is dramatically different than the dialogue going on in my head.
It goes something like this: The part in quotations is the out loud conversation and the part in parentheses is the talk in my head.
"Are they ALL yours???"
"Yes, till death do we part" (OK, I see your eyes darting back and forth between Jacqueline and Zachary.)
"Wow, you certainly have your hands full!"
"LOL, yes I sure do" (You keep looking at Zachary and I can't tell if it's because you notice something different or if his hair has your attention.)
"And this is the big brother (look to Jeremy). I bet he's a big help"
"Yes he is, he loves his brother and sister and keeps them out of a lot of trouble" (Now you can't stop staring at Zachary because he's not old enough yet to know that you might be looking because he's different.)
"And look at you with that blonde hair!!!" at this time they will usually have bent down to get a closer look.
"We say his hair is that color because that's his halo that melted onto his head when he was born" (Do I offer an explanation at this point? do you notice? can you tell something is wrong and you can't figure out what it is? I feel that pit in my stomach AGAIN because all I want is for him to face the world w/ a face that won't be investigated.)
"Awww, that's sweet, he looks like a good boy."
"He is a fabulous boy, for everything he's had to go through and he has the most calm, friendly nature." (Okay, here I go, on with the explanation... CAN YA TELL????) He was born with a cleft lip/palate and has had some pretty extensive reconstructive surgery" (Yup, here's the look of pity, or is it a look of judgment? I swear I didn't DO anything to make him this way although I'll always wonder if the cough medicine I was taking before I knew I was pregnant did something or is it because I was older and had no business having kids or is it some kind of punishment for some long ago forgotten sin no matter how many times I tell myself I was actually chosen because I'm the best choice at this time for this child and can you see the anguish in my soul? Can you see how I would trade my own face for this innocent baby to have a normal life? CAN YA' TELL????)
"Oh, they can do so much now-a-days with those kinds of things"
There's more to the story...to read more, visit Colleen's blog entry at Can Ya Tell...??
Guest Blogger Colleen Salvato
Visit Colleen's blog at My Brother's Smile
Wednesday, February 11, 2009
Some days are better than others. I often wonder if I could have done something more to prevent this. I feel like a freak having two kids born with the same birth defect. I am the only person I know with a child with a cleft. That was until I joined Cleft Club and More Than One Cleft ;)
My second child was born with a cleft; she is my husband's first child. I actually apologized to him for her cleft. I felt that I had failed her and him in some huge way and that my own deficit had caused her to have this defect.
Thankfully he told me that it wasn't like that for him, and that I shouldn't blame myself. She is in perfect health and she made it into the world safely and for that he was so happy. He just holds me and tells me to stop blaming myself. He reckons that the fact that I want to know why make me a good mother, but the fact that it happened is just beyond our comprehension or control.
What I did discover is that my kids can't really benefit from this kind of self-judgment. What they do need is a mom with her self-esteem intact who is positive about what CAN be done and who is willing to work at making it better for them. The questioning can erode your confidence and make you feel like a victim if you don't try to turn it into a positive.
We feel that it is better that she is born into our family with all the resources to cope, with a sister who has paved the way for her and trained us about what to expect from surgery, and a mom who is willing and able to try and learn about her condition, than to be born in some less perfect circumstance.
So I am working on staying focused and loving myself so I can love my kids properly. If I lose it, who do they have? They need me to be happy with myself to teach them how to be happy, too.
I actually feel pretty stressed today. There is so much going on. Getting online and remembering my friends who are in this with me (no matter how far away you all are) does help. Anything that makes mefeel a bit better on bad days is welcome here. It's nice to know that someone else feels this way, too.
Guest Blogger Fiona Comber
Sunday, February 1, 2009
Most pregnant women answer that question automatically, almost flippantly, really without a thought as to what would happen to her world if anything other than that did happen. I said it many times while pregnant with my twins. Never in a million years did I think to say, “I don’t care as long as they have palates and lips that are intact.” I was going through pregnancy on blind faith that everything would be just perfect.
My pregnancy with the twins had not been easy. Between extreme nausea, growth concerns about my son, and being placed on bed rest, I was ready for a happy ending—two healthy babies. In the end, I did get my happy ending, but the path there wasn’t how I had imagined it in my mind.
Even though many ultrasounds had been done on the babies, the doctor failed to see that both my son and daughter had clefts. It wasn’t until I was in the delivery room – 6 weeks before their actual due date – that I found out. My first reaction was fear and then anger…lots of both. I knew nothing about clefts and in my naïve mind, I thought that maybe the doctor could’ve done something to prevent this. My reaction to the news would vary between yelling at my doctor (it wasn’t one of my finer moments) to praying that if they weren’t going to live, that God would take them quickly because I didn’t want them to suffer. And always, without fail, there were tears – lots of tears.
During the days following their birth while we spent a lot of time in the NICU, I began to have a shift in how I looked at this mountain we needed to climb. As I began to learn more about clefts, I wasn’t so overwhelmed and scared. As I looked around the NICU at babies who were very sick, my fear and anger turned to thankfulness. There were people in the world that had children who died. Mine were alive. There were people whose babies died shortly after birth. Mine were growing stronger every day and were feisty, tiny, little creatures determined to live. We brought them home and in what seemed like a blink of an eye, the overwhelming feelings we experienced weren’t due to them having clefts, but instead were due to sleep deprivation and having two crying, needy babies that needed us 24 hours a day!
It’s been 6 years since I heard the news that would forever change my life. Whether you’re just starting on your journey, or you’ve been on this road for awhile, the future doesn’t have to be overwhelming. Just reach out for help; many hands will be there to help you through.
Guest Blogger Heather Wilson
Visit Heather's Blog at The Opposite of June
Read more at cleftAdvocate, a program of AmeriFace
Monday, January 26, 2009
AmeriFace is the premier support organization for the cleft/craniofacial community - or as we like to call it - the community of persons with facial differences and their families. The verbiage is finally catching on...but we have a long way to go to educate not only the patients and families we serve, but to an even greater extent, the general public.
Since 1991 we've watched the organization and its programs grow, and our outreach become much more than we ever dreamed possible thanks to the age of technology. Requests for support and information have increased exponentially and thanks to our Pathfinder volunteers, we continue to meet the needs of our clients...our friends.
We realize that AmeriFace can't continue to be the largest, most active organization of its kind without taking on more and more responsibility each year, because...
So for Phase 1 of The Face of Change initiative, an incredible program in development for quite some time and finally coming to fruition, we're launching this blog.
The Face of Change is not intended to be "just" a blog; "just" a journal. Overall, The Face of Change is a state of mind. It's about:
- Changing attitudes, both within and outside the community of those with facial differences.
- Acceptance, not tolerance.
- Educating patients and families about the various conditions represented within the community.
- Working with like-minded organizations as well as government and community-based entities to ensure the multi-faceted needs of patients and families are met.
- Educating medical and education professionals about what patients and families require to ensure best outcomes.
- Facilitating care for those who are uninsured or underinsured; patients who "fall through the cracks."
The Face of Change will spotlight the insights and journeys of a series of Guest Bloggers. And that means you.
We'll feature your thoughts and experiences to build a living library of informative and inspirational entries. Expecting a newborn with a craniofacial condition? Fighting an insurance company? Getting ready for surgery? Survived trauma, illness or disease resulting in a facial difference? Had an experience at the park or in the supermarket you want to share?
While we invite you to share your thoughts, this will not be a forum for typical periodic updates on yourself or the family, etc. as that is what your personal blogs and websites are for. Nor will it replace our incredibly successful programs at the Family-to-Family Connection and our other listservs, where you can ask questions, get answers and offer assistance to others.
What we're looking for here are those insights, those "a-ha" moments, those things you wish everyone knew.
What has inspired you thoughout this journey? What has frightened you?
What will you write that will help change attitudes and opinions, not only those of the general public but perhaps even your own?
What will you blog that will make a difference in someone else's life?
How will you...
Educate Inspire Serve Lead
Only a few guidelines apply:
- Submissions will be published once each week; more often when warranted.
- Guest Bloggers must limit entries to 500 words. Feel free to include links to additional information.
- Your entry must be submitted for approval. We will then post your submission with your contact information to The Face of Change blog. This is not an attempt to censor, but to ensure spelling and grammatical snafus are caught before publication, as well as faulty web links, etc. This will make for easy reading and the best possible organization of the blog for our visitors.
- Guest Bloggers will be limited to one published work each month; links to additional information are encouraged.
As we roll out the blog, we'll also be unveiling the outline of the Face of Change initiative, so stay tuned for the who, what, where, when...and you already know why - because we're...
Making a world of difference in a world of facial differences!
Looking forward to your inspiring entries. We'll soon announce our first Guest Blogger!