On May 31, 1996, a beautiful baby girl named Elizabeth was born. Her mother, Annette, was overjoyed with the arrival of her firstborn, although scared at the thought of caring for this 29-week tiny preemie who seemed so fragile. 

It wasn’t long, however, before the celebration of this new life was interrupted. While she was still an infant, doctors diagnosed Elizabeth with mitochondrial disease — a chronic, incurable illness with many severe effects. Annette was heartbroken, confused, and unsure of where to turn for help.

Throughout her life, MD inhibited Elizabeth in substantial ways — she was blind, wheelchair-bound, unable to speak, intellectually disabled, and extremely medically fragile. This degenerative disease changed everything about the life Annette and her family once knew. Their world now revolved around making sure Elizabeth was safe, happy, comfortable, and able to survive another day. 

With the help of so many incredible people and organizations in Massachusetts and beyond, Elizabeth was able to live 17 years being wholeheartedly loved before passing away in November of 2013.

Elizabeth was not only a light to her family and all who knew her during her life, but her legacy has continued to live on and touch the lives of many special needs families through the hard work of her mother. 

 

Elizabeth’s Legacy

During that 17 year journey, Annette experienced first-hand how difficult it can be to find the accurate information, tools, and support parents of special needs children require both on a daily basis and when making big life decisions.

Legal processes like estate planning, the transition to adulthood, trust administration, determining guardianship and conservatorship, etc. can be confusing and overwhelming for any family, but they can be even more daunting when planning for a special needs family member because there wasn’t just one place to go for all the information that addresses their unique needs and challenges. Annette saw this gap and decided to do something about it. 

Over the last two decades, she has centered her law practice in the area of special needs, which inspired her to open the Special Needs Law Group of Massachusetts. Her firm helps guide special needs families through various types of complicated legal matters – but Annette’s work doesn’t stop there.

“When I was going through all of this, I so badly wanted someone like [who I am now] to talk me through it and help me navigate,” says Hines. “[Through my book/podcast/other mediums], I try to reach all of you so that you’re not lonely like I was, so that you have the information you need, and so you’re not missing the things I was missing when I was raising my girls.”

Using her book, “Butterflies and Second Chances”, podcasts, social media presence, and other resources, Annette is determined to provide a hub of educational and supportive resources for the special needs community. Through this effort, Special Needs Companies was born as a one-stop-shop for information about planning for different life stages of special needs families.

“Elizabeth is the inspiration for everything that I do,” says Annette. “I am hopeful that by connecting us all together, sharing, and creating a community, we can help each other. In doing so, you are helping me heal, so thank you.”

 

“Seek the Joy”

This week brings up mixed emotions for Annette and her family as they reconcile grieving a tremendous loss and celebrating the wonderful years they had with their beloved Elizabeth. 

Looking back over the past 6 years since Elizabeth’s passing, Annette encourages special needs families to see beyond the times of tragedy and hold onto the moments of bliss, laughter, and lessons that make up life.

A few months ago, Annette appeared on Sydney’s Weiss’s “Seek the Joy” podcast where she discussed the importance of finding these beautiful moments in the midst of hardship. Listen to the episode here.

 

Thank you, Elizabeth, for showing so many people how to find joy in struggles — you are an inspiration to us all. Happy Birthday.