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.”
Through it all, Allison has transformed into what I consider a “Hero Mom”. When asked, heroes don’t think that what they have done is anything spectacular. Some people run into burning buildings or jump into icy water to save others. The life of a Hero Mom means sacrificing constantly. Disabled children have many ups and downs which require an abundance of flexibility and the relinquishing of control. In Livy's case, things are great and life appears normal. But in an instant, life can take an unexpected turn. A small fever often sets off a series of events starting with increased seizures and then a trip to the doctor’s office which in the past has concluded with a visit to the ER and a hospital stay. Olivia is non verbal so we are constantly guessing if something is wrong when she does not appear to be her happy, smiling self. Allison has to endure most of this each and every day. She brings Livy to school, picks her up and takes her to numerous doctor’s appointments and therapy sessions. Many days in the past, she has received phone calls that Livy is not having a good day and she has to drop whatever she is doing to go get her.
This type of life creates a tremendous amount of stress. It is the kind that never goes away but hides in the background ready and waiting to rear its ugly head. Even though there have been the darkest of days, Allison finds a way to bring sunshine and laughter into our lives and is determined in her pursuit to make a difference in the lives of others. She is more a realist now than a dreamer and she keeps us grounded to what is truly important. She regularly says, “Appreciate each and every day because we never know when our lives will once again be thrown into chaos.”
In the midst of all of there is Hailey. We say that Hailey is growing into an amazing little girl because she is witness to a sister who has tremendous challenges. Hailey is one of Livy’s most ardent supporters and vocal advocates. It is true that Hailey is getting to experience a completely different side of life than her friends. Livy is teaching her things we never could. But what also is true is that Hailey is growing up with a compassionate, devoted, loving mom who is exemplifying the true meaning of motherhood. There are few better circumstances that can prepare a young child to raise the next generation.
As each day passes, I become more and more proud of Allison. I sometimes ask, “Do you think you have changed over the last nine years?” She gives me a telling smile and sighs. There is no way to go through such incredible emotional trauma and not to have a piece of you torn away. Despite the mental roller coaster, the mother she has become far surpasses anything I could have expected.
What strikes me the most is that Allison lives her life by what she was given; a choice that was not hers to make but a challenge she has accepted with grace and honesty. She will give everything to ensure Livy is loved and is safe. She will continue to provide Hailey with the most happy and fun childhood possible. We are uncertain what our future holds, as are most. But with Livy, that future seems a little harder to foretell. What I do know is that I am married to a woman who is a wonderful, nurturing mother and an extraordinary wife and partner. I admire her for whom she has become and for all that she does for our family. She is beautiful both inside and out and is always thinking of others. In my eyes and in the eyes of her daughters, she truly is a hero.
Happy Mother's Day to all of the dedicated, loving moms who sacrifice every day and who go far beyond what is expected of you. You make this world better and are shining examples for us all to follow.