To the Editor:

We are a family in Sandy Hook.  You may or may not have met Daniel. He just turned 18 years old. Daniel was born with a rare brain deformity. In the early years, when I had to leave my career, and my children were small, we had a seemingly endless support structure. As years progressed, support has changed, which is very often the case for most families with a disabled adult at home. Daniel endured surgeries and serious illnesses in the past three years. This November, Daniel was diagnosed with Whooping Cough. He is fully vaccinated. He is  in the seventh week of the illness, still coughing very badly.

When you have a special needs baby, who lives to see his teen years, it is ironically typical that people in your life seem to disappear. It could be that as a full time care giver you become less visible to the world. Even happy people can feel awkward and lonely. Daniel is a young man now, but clearly my life is unique, as I am literally attached to my child most of the time.  I have dedicated my life to his well being.

Caring is harder now. Programs are sparse. Dealing with DDS and Social Security is like learning to speak Russian. Why a magic wand determines that a child who turns 18 no longer needs the same thing as he did at 17 years old, doesn’t make sense. My husband and I want the best for our family. Daniel’s quality of life has been the central focus of our family since he was born. The costs, extrinsic and intrinsic, of caring for a disabled person in your home are incredible. As resources dwindle, his medical, physical, and emotional needs are increasing. 

On Christmas Eve, a woman drove up to our house handed my husband a card. She said it got mixed up in the mail. Inside that card was a bank check, and on the envelope it just said “Daniel.” It was not signed. That check took care of some desperate expenses and helped us give him a brighter Christmas.

We want to thank whoever touched our hearts on Christmas Eve. Thank you for not forgetting Daniel. His sunshine smile can light the darkest of days. I am the luckiest Mom alive to have this gorgeous boy as mine. Whoever you are, that left us this gift, you pulled my heart out of that isolated place on Christmas. God never promises that life will be easy, and we are challenged in a society that makes life as a special needs person so complex.

On Christmas Eve we were in awe of your kindness. The struggle is real. The love is greater. Merry Christmas and Happy New Year to you, friends and community. We are very grateful and wish you all love and miracles, too.

Much love,

Julie Hasselberger

Newtown                                                                                            December 30, 2015