Livy's Hope Blog

Welcome to the Livy's Hope Blog!

Hero Mom

On December 15th, 2004 in St. Petersburg, FL, I not only saw the birth of my twin daughters Hailey and Livy, but I was also witness to the beginning of a journey for a remarkable mom. Hailey was born first and was a very healthy, typical baby. Livy had different plans in store. A little more than an hour after birth, Livy had her first seizure and went on to have several more seizures that day. The four of us flew to Boston for some specialized care at Boston Children’s where Livy was eventually diagnosed with a brain malformation. While Livy was at the hospital, Allison spent every day with her. I flew back and forth on the weekends but only dealt with a portion of what Allison dealt with; the endless parade of doctors, nurses, medications and foreign medical terms. It was so bad at one point, they asked us if we wanted to sign a DNR (do not resuscitate). She was a new mom with twins who was supposed to be relishing in the birth of her girls, not deciding what treatment to try next for something we knew nothing about. She lived two different lives; getting to know Hailey as a newborn when outside of the hospital and not knowing if she would ever be able to truly meet Livy.

Our family was finally reunited for good in September of 2004. Livy’s path home took her back to All Children’s Hospital in St. Petersburg and then through a nearby Hospice house. Over the next four years, there were frequent hospital stays, doctors’ appointments, therapy sessions, insurance battles and two major brain surgeries. The second procedure disconnected the left side of her brain in an attempt to stop the 100 plus seizures she was having per day. Since her second surgery, Livy has done considerably better. However, she is a very complicated child who requires full time care for all of her needs. Allison made the decision that she would be the one to take care of Livy. I remember her saying on multiple occasions, “No one will take care of her like I will.”

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Recent Comments
Guest — Linda Maegdlin
What a beautiful tribute to a BEAUTIFUL woman!
Friday, 09 May 2014 10:06
Guest — Carol
Much love to you, Allison--and to those you love.
Friday, 09 May 2014 15:23
Guest — Deborah Telles-Palladino
Jonathan: You wrote a beautiful tribute to Allison and it is so well-deserved. She stands head over heels over most others and I... Read More
Friday, 09 May 2014 10:50
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Happy Mother's Day To The Super Moms

Happy Mother's Day To The Super Moms

Wouldn't it be nice if, when a woman got pregnant, she had the option to sign up to be a Super Mom? Isn't it only fair? No mother-to-be ever says, “Sign me up to give birth to a child with special needs. Perhaps my marriage will become extremely complicated or even end. I hope to lose many of my friends after the baby is born. I look forward to my body deteriorating much faster than women my age. Put my name down for depression.” Yet these are all common realities the Super Mom faces.

It is a fact that the majority of parental caretakers for special needs children are mothers. In today’s world, most dads go off to work not fully aware of what happens at home. Many times, dads turn their backs on their families all together because they are not able to handle it emotionally. I can’t even imagine walking in the shoes of a single mom raising a disabled child. Again, another choice these amazing moms do not get to make. Allison and I have a hard enough time and we are both engaged.

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Recent comment in this post
Guest — Carol
Jon, and behind your three girls is a great Dad and husband...lots of hugs,
Sunday, 12 May 2013 14:31
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