2010 at the launch of #threelittlebears

 

It is with great pride that I write about a very special and personal project and event. The Three Little Bears (www.operationsmile.org/bearsare named after my three children, Zachary, Luke and Griffin Lori.  My children were all born with a raremedical condition called facial paralysis which meant they couldn't smile and had difficulty eating and speaking.  

Two years prior to having my first son, I was diagnosed with anautoimmune disease called Myasthenia Gravis (MG).  After surgery and a lot of hard work, my husband and I asked my doctors if I could have children.  All the doctors we consulted told us that an autoimmune disease could not be passed to our child and that the greatest danger for pregnancy would be to me.  After my first son was born, my son could not eat on his own and had several physical abnormalities in addition to muscle weakness.  At the time, everyone thought these symptoms were temporary and when antibodies from my MG burned out of his body, he would be completely healthy and normal.  We brought him home from the NICU after five long weeks with a feeding machine, heart monitor and a lot of fear.
Zack in the NICU at New York Hospital
 
Eventually some things got better and some did not.  He was off the feeding machine at three months old but eating took a lot of work. Although he did not have MG, he could still not close his mouth, keep fluid in his mouth and speaking would prove to be very challenging, among other things.  We searched high and low for answers for years that no one had. Doctors could find no other cases where this had happened.  So we had another child, thinking at the time my oldest would recover and feeling sure that this could not happen again.  I underwent a weekly plasma cleaning process called plasmapheresis to proactively clean out the antibodies in my system that may have interfered with my first son's development. 
 
In the NICU, babies are often called by their last name,  in this case, Baby Lori
Despite this, my second son Luke was born with the same symptomsand, as we would learn a few years later, he was also hearing impaired.  It was almost more devastating than the first time. Now doctors really didn't have any answers.  My third son came quite by surprise just fourteen months later, but although physically he was somewhat better than the first two, he still had some of the same facial challenges and weakness.  I now had three small children with disabilities and no hope for improving any of their physical challenges. It was overwhelming to say the least.
Three beautiful little boys, this is the best smile they can master at the time
 
For seven years, we went from doctor to doctor for help.  Finally, my husband found a surgeon in Toronto named Dr. Ronald Zuker who pioneered something called a muscle transplant surgery where he took a muscle from their leg and transplanted it to their face. The procedure had been created for children with nerve or muscle damage in their face to help them smile, speak and eat more clearly. Many of these children had a syndrome that caused facial paralysis.  
 
After much discussion and testing, he agreed to take on our case and operate on our oldest son.  I wish I could tell you this was an easy decision and we said, great where and when, but that would be a lie. I was dead set against the surgery.  It required two separate 10 to 12 hour surgeries that would be three months apart and require a substantial recovery process. There was no guarantee the procedure would work as our case was one of a kind and we wouldn't even know for three months after the first surgery if it did work.
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At this point in our lives, I had come to believe that nothing could help us and we needed to accept our fate.  Seven long years of disappointment and disillusionment was almost impossible to overcome.  Slowly cutting off family and friends, I lived in a very small sphere between my professional life where I told virtually no one and my personal life where we had lost every semblance of privacy.  Everywhere we went people stared at us, young or old, it didn't matter, the insensitivity of complete strangers was boundless.  
 
I believed then there was no magic solution.  There were severaldoctors in Manhattan we consulted that told us it wouldn't work and so I would walk out the door and say, "See that's it, it won't work."  But my calm and determined husband, wouldn't let it go.  
He would look me in the face and say, "Lisa, they have to be able to speak clearly, eat properly, to get a job and function normally."  But I didn't live in the future like he did.  I lived in the here and now, and the here and now was more than I could bear.  What if it didn't work?  What would I tell my eight year old son about how unfair life was when he already knew all too well how unfair it was?
I finally agreed, or gave in, is more like it, and we had the procedure.  Twelve weeks later, almost to the day, I went shopping in Target with my boys and I looked at Zachary and I saw it.  I saw his face move for the first time in his life.  I shouted to him to go look at himself in the restroom mirror and see if I was right.  He did and came out shouting, "it worked Mom, my face is moving."  I was so flustered i started pushing someone else's cart around the store until I realized my purse and keys were somewhere else in that giant store. Who cared?   My son's face was moving. 
Zack before surgery

Zack after surgery at our first Operation Smile benefit

 

My children had more than 8 transplant surgeries over the next 4 years and now, all are able to smile and speak and eat easier. Although their journey is far from over, we have much to smile about.  When my oldest son was first able to smile fully, I can tell you it brought us, and our friends who knew him, to our knees.  You can live so long without something that you tell yourself it doesn't matter.  You tell yourself you don't need it and you believe it. Then one day it happens and it almost too much to comprehend.  It took us, and Zack, many months to absorb the change.

Luke right before his second surgery at Sick Kids Hospital in Toronto.  He has his favorite stuffed animal to bring in the OR with him.

It was after my middle son Luke's first surgery that my husband and I wanted to give back to the surgeon that changed our lives -- Dr. Ronald Zuker.  How could we not share this second chance we had been given.  We hosted a fundraiser with the singer Sophie B Hawkins at our home for Operation Smile, Dr. Zuker was a medical volunteer for them and our friends showed up and gave freely.  It was a beautiful moment I will never forget.  My childhood friend Kathy Van Zeeland, who I had gone to high school with, lived in NYC in my first apartment with, and who had flown to Toronto to take Zack and I home that first surgery, came to the fundraiser.  She asked simply, 'what else can I do?'.  
Kathy and I were just kids when we met and this week our life will really come full circle  
Kathy was a very successful handbag designer and so I told her how children going into surgery get to bring in one stuffed animal or blanket.   We developed the Three Little Bears named after the boys which give children life changing surgeries for just $240 and a bear to comfort them when they go into surgery (please see below press release).  
Since we launched this project in 2010, we have raised almost 1 million dollars from bears and fundraisers across the country. Kathy and I met at age 13, the same age my oldest son Zachary is right now.   
#threelittlebears
Dr. Zuker is one of hundreds of medical volunteer for Operation Smile and to support their work has been more than fulfilling for all of us, it has given us purpose and allowed us to help make sense of our own circumstance.  
Next week, we will be honored for our support at the Operation Smile New York Smile event on May 1st at Cipriani Wall Street.  Kathy's friend Michael Strahan will be a special guest and Natalie Morales, a longtime Operation Smile supporter will host.  The night will celebrate Latin America where Zack, my husband Mat, Kathy and I went on our first mission to Panama.  Dr. Zuker will be at the gala.  Last year, in Panama,we got to personally deliver bears to patients. It was an incredible experience. How beautiful for me to be able to share this moment with my friend who has done more for me than she will ever know.
There is no greater gift you could give a child and their family, than a smile and a new life. I can remember the exact moment when my son's first transplant started to work. It was life defining and I know that when Operation Smile patients and their families see that bear, for the rest of their lives, they will know that, just like my day in Target (see you really can get anything at Target!), it was the day they received their smile.  Nothing better than that. Nothing. Imagine being able to trigger that kind of happiness.  
 
 #triggerhappiness

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Tags: Michael, Morales, Natalie, Operation, Smile, Strahan, needs, smile, special

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