A Quick History

As you may have seen in my profile, I have been married now for 11 years to a beautiful woman named Tara. Tara is quite a unique individual. She has shown strength that I would argue many would never be able to find in themselves. In 1997 our daughter Mary was born. Mary was born with a very rare syndrome called Cerebro-Costo Mandibular Syndrome. This is so rare, that prior to her birth there had only been 75 cases ever reported world-wide. During Mary’s first few years when all the other Mom’s were running to Mommy and Me classes and whining about how tough it is having a child, Tara was spending just about every day on the phone with insurance companies, nursing agencies and durable medical equipment companies fighting to get Mary the care she not only deserved but had a right to. Mary’s condition was so fragile in her first few years that our worry wasn’t, "Do we have the right stroller?", it was will Mary be alive 3 months from now. That may sound like I am exaggerating, but I am most certainly not. Put yourself in that position; think about something with your child that you worry about. Now think about if that worry was will my child be alive in 3 months. It may make your worries seem a little less. I’m not saying this to minimize any issues anyone would have, just to try to make you realize what Tara was dealing with on a daily basis.

Nine years later, we have taken our life and tried to make a difference in ours and others. We opened a Pediatric Therapy facility in 2004 which provides Speech and Occupational therapy for children. A short time after that I started a non-profit organization to help families who can’t afford therapy for their children. Both websites are links on my page. (Look to the right) Tara runs the facilities day to day operations and basically works her ass off. We have done a bit of role reversal and for the last two years I have been taking care of Mary more while Tara is putting in hours to bring home the bacon. So you can have an idea of how hard she does work, she was just voted one of the top ten business women in Southern Jersey by South Jersey magazine. It just came out in September's issue, not sure if it will be on the website or not, heres the link in case anyone's interested http://www.southjersey.com/

Mary will be turning 9 soon and we basically can’t believe it’s been 9 years already. She has been an inspiration to us and just about everyone who meets her. She is currently, non-ambulatory, ventilator dependent. Her movement is very limited to moving her left thumb, and partial leg movements, nothing really functional. She cannot speak, but she can blink her eyes for Yes and roll her eyes for NO. We have been working for awhile now on teaching her to use a computer to communicate, but that is a long process and we are only at the beginning stages. Hang out with her for a day and her personality will become very apparent. She has been through more in her nine years than most people will go through in a life time. We lost count, but she has had around 24 surgeries since birth. She has been rushed to the hospital more than once with breathing issues that were critical. Through it all, she is still a very happy child. I know that this attitude is seen in many children that are very ill. I would suggest that all whiny adults take a lesson from these children. Life ain’t so bad.