Zachary
See the twins' birth announcement
7/24/05
6/23/04
Family Vacation OBX NC, August 2005
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Family Photos collage 2005
Lip repair 11/22/04
Palate Surgery 6/21/05
My Grandparents
Twins' first birthday
Jeremy
Photo Albums: Zachary, Twins, Jeremy, others
Musings
2006 Looking forward to another year
Cleft Advocate
Meet Emily
My name is Zachary and I was born June 23, 2004 one minute behind my twin, Jacqueline. I was born with a bilateral cleft lip and palate.   My sister, Jacqueline, is not cleft affected.  My older brother, Jeremy, was also born with a cleft lip.  His was an incomplete unilateral cleft on the left side.   Look at my pictures and see where I've been and what I've done so far.

My parents found out during an ultra-sound that not only were there two of us but that I was going to be born with a bilateral cleft lip and palate.   Things went spinning after that.   My parents did a whole lot of research and talking and after many months, decided to go to NYU and use the Nasal Alveolar Molding (NAM) device.   It entailed weekly visits for about five months and much work on my parents part but the NAM pushed things into place and helped grow some things that were missing.  The NAM is meant to take quite a few surgeries out of cleft repair.   I had my first surgery on November 22, 2004 to repair my nose, lip, and gum.

I've had some wonderful, talented people taking care of me in my short life so far and my parents want you to know all about perseverance and most of all, to have faith that things will be ok.; I taught them that.

My parents are forever grateful to the team at NYU whose work is nothing short of amazing.
Click on the bullets under "Family and Friends Links" and watch my journey so far!



Meet Rachel
August 2005
I have a Mom and Dad, a twin sister Jacqueline, and an older brother Jeremy.
Recent Updates, 7/05
It's hard to believe a year has already gone by.  So many life changing events have happened to us all.  Jeremy became a big brother to not one, but two babies.  Zachary has become an inspiration to all of us who have had the honor of being with him in this journey.   And Jacqueline, our sweet petite, has had us laughing through it all while enduring her own little journey with positional plagiocephaly.  So many people have wondered how we get through it and fortunately we've maintained a very strong faith that there is a reason for this and we are truly blessed.   It's been a gift.   We've been given the gift of tolerance, patience, humor and most of all, children.   Greg said it best when we first found out about what was going to happen to Zachary.  As I sat on the table in the perinatologist's office in March 2004, full of despair, anxiety, horror and grief, asking my husband what we were going to do he said, "We thought we'd never have children and now we'll have three.  We take what God gives us and make the best of it."   It was just the slap of perspective I needed and it became my private mantra.   It still is on those days when I look at my son and imagine him asking why he has to go through this.   When he'll ask me why he can't have a face like everyone else.  I'll tell him because he was a gift and God has chosen him to represent the resilience of the human spirit.  That it's up to him to show the world that beauty is soul deep.   I worry about this responsibility but then again, I suppose he will teach us about grace in the end.

Throughout this past year, life has moved at a dizzying pace for all of us.  ; We have been incredibly lucky to have grandparents who have selflessly stepped up to the plate and provided an abundance of support at a time when they should be enjoying their own lives without worry. They cried with us, worried about us, and wished more than anything that they could take our place in this.   They have fielded phone calls, handled holidays, stayed overnight during surgeries, paced the floors with babies, cooked us meals, did our laundry, and completely understood our forgetting birthdays, holidays, and,  when we would forget to call from the hospital with an update.  We never realized just how many people we couldn't call or how many things we couldn't do and the guilt of losing contact this past year has weighed heavily on us.   Again, we've had many wonderful, supportive friends and family who have shown a tremendous amount of understanding and a desire to want to do more.  Their support is enough, prayers are the only thing we really need.

Now we move into a quiet time... thankfully!  Well, as quiet as it can be with three children.  Two of whom are just beginning to walk and taste the world around them.   We often joke that it's only taken a little over a year, but now that Zachary's first major hurdles are over and Jacqueline will be done with helmet therapy, we can now go places and people will ask about our children.   Not about what's wrong with them. No more whispers that we pretend not to hear, no more stares that we always feel but pretend to never see.  No more parents being horrified when their curious child innocently asks, " What's that on those babies?"

We've surprisingly met many people who have shared a similar journey.   I suspect it is fate that puts those people in our path.   They give us strength and their wisdom and anecdotes are greatly appreciated.

We are very aware things could be worse... they could also be better ! :)  Would we have signed up for this had we known ahead of time?   NO WAY!   If we were given the option to give it all back for a "normal" life would we?   Not for anything.  The price has been cheap compared to the rewards we have received.   We look at our children, scars and all, and realize how rich we are.
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