I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Yesterday I received a card in the mail from my Dad. It was an Easter Card. Cheerful and hopeful, as is the essence of this time of year. When I opened the card, I was walking out in my yard with the dogs. As I slowly turned the cover of the card, reading the poem, I felt this surge of emotion that actually made me feel shaky, and my lip quivered. And I began to sob. Deep guttural sobbing. Missing my Mom. Longing for her voice, her presence, her love. The card was signed, Love Dad. Love, Dad. It was profound to see that my Dad carried on my Mom's love of Easter and Spring. She always did nice things for others. I guess he wants to keep the love blooming.
Losing my mother has been life changing, all the way down to my soul, and where ever my deepest self resides, I miss her. I know her energy and her spirit is living on, in the light and love that she was.
Grief is a strange companion. One minute you are sobbing and heart broken. The next you are seeing the little miracles that continue on and on. The childlike spirit that I have always nurtured within me, was a trait I inherited from my Mom's inner child and her love for, well her love for love.
Spring is here. In all of its beauty and rebirth, and while it reminds me of her and brings sadness, it also reminds me of her and brings joy and gratitude for all of the beauty in nature and in humanity.
I have a lifetime of Easter memories, because she made it happen. She loved the bunnies, the decorations, the flowers, the treats, and most of all, she knew the true meaning of the resurrection of Jesus. She blended it all together like an Easter bunny Jesus is my savior smoothie. Cheerful. Bright. And so many bunny statues.
I have no plans for Easter except to honor my Mom and sit in fond recollection of a life time of her love for Spring.
That Easter card, meant everything. Despite the sobbing mess that I was for a while yesterday.
I had a great Mom. I have a great Dad. They are both here with me. Forever and always.
It is part of things. You know, history. Things that happen. And as much as we become soldiers of resolving to choose love, and to be kind, history can not be changed. Each moment, becomes history. We are creatures, who for the most part, want to live a life of love. A life where we fulfill whatever our interests are, and support whatever our goals are. And then really bad things happen.
Here, on Bennetts Bridge Road in the small town of Sandy Hook, CT we had just moved across town and into this house when September 11, happened. My youngest was only 6 months old. It was such a profoundly horrific thing that all life just stopped as we knew it. People, being people, got back out there and back to their lives. But I'm sure there are many, directly affected, who are never ever going to face the day in any way remotely close to how it was on September 10, 2001. I remember so many shocking and strange memories and feelings from that day. But I didn't see the smoke, hear the crashing of the planes, see bodies falling from the buildings, feel the earth shake as the towers fell, or stand for weeks with a lit candle praying for a lost loved one.
On November 8, 2008, a beautiful young man, at the tender age of 13 was taken from us too suddenly. A neighbor, a friend, a vibrant and smart young man. He had ridden the bus with my daughter since we had moved here, and she started first grade. His passing altered her reality and security, for the rest of her life. I know that there was so much pain not expressed, but it was not supposed to happen. A 13 year old boy, sudden and tragic, doesn't die and leave his family. We miss him. We think of him. We pass his family's home every single day. And I recall shuddering and crying for his Mom. And I recall that my daughter would never again ride the bus to middle school without him there anymore. History. A moment in time that didn't just mark an event, it marked a significant change in the path of a plan for a happy future. Sandy Hook, CT mourned the loss of this child, but time went by. He has been remembered, and honored. And will always be a part of who we are.
But, last December 14, 2012, when Adam Lanza, a neighbor, decided to take his family guns and go on a murderous rampage in a quiet sleepy little town, history became black. Dark. Painful. A black hole of confusion. Wonderful families with plans of great futures, losing their 6 and 7 year olds. And teachers, just doing their jobs and supporting their own families, became heroes, and loss lives too. All right here. All within a few miles of where I sit and write about "Raising Daniel Hasselberger". As I drive down my road now, I pass the home of our friend who passed in 2008, and I pass the homes of 4 or 5 neighbors who buried a child less than a year ago. And as much as we pull together our healing resolve, trust me, this is an incredible town, it still hurts us. We all remember where we were that morning, what we were doing, where we were driving. There is always a sickish feeling when I pass the Sandy Hook fire department and the road that lead to that school. Because my kids went there. And it was a happy wonderful place for them. And its now a black, solemn place, hallowed ground. Evil walked there. And no one else wants to.
I was tending to Daniel then, who was very ill and in the hospital. Now, he is quite well. And we are so pleased with how much better he is as we face this Fall.
But history, even though it is the past, pulls at our hearts when we least expect it to. Sandy Hook, CT sometimes feels like just another town, roads I pass to get to the bank, gas station, grocery store, schools... And other days, there are reminders that you see in the form of remembrance stickers and magnets on the back on almost all cars. Green. Green and white for Sandy Hook. It will never be the same here. How could it ever. Nor should it ever. History changed the road. But we still live here.
And in my house on Bennetts Bridge Road I raised my daughter, and did my best to give her as much as I possibly could. Even though we struggle and scrape, her future was so very important to me, to get her out of this town, and somewhere else with new history to make and face. And in my house on Bennetts Bridge Road, I am watching this young man named Thomas, emerge. He is brilliant at music, bass instruments likes Baritone sax and Trombone. Great kids, a part of the flow of the school system, participating in so many activities, mostly related to music and the arts. And also in this house, we are raising Daniel. Daniel who will never speak words, who will never express to us how life is affecting him. He just watches. His eyes absorb. His ears hear. His hands feel. And I admire his never ending smiles that come at the times when you think he really should not be smiling now. All of those surgeries, all of those physical and mental impairments, all of those seizures, and spasms, and cramps, and pains. And he laughs like he has just heard the best joke ever, every day.
Does history change a child like Daniel? I don't know how much he is mentally aware of bad things. But I do know that he senses my physiological changes. He participated in activities designed to help the kids heal and persevere. He met the Giants!!! Did he really know who they were? Maybe. But they treated him like a king and it made me feel included that day. Daniel wakes up to the same routine, pretty much every day. And most of his day is spent monitoring his physical status. I never knew if he understood fully the change to our community, but I do know that the dogs who came into his room significantly affected him. There were a few who like him particiularly alot. And next thing we know, to make a long story shortened, a beautiful dog was donated for him from Ohio. History made that happen. Without 12/14 we would not have had dogs in school. Without Dogs, we wouldn't have seen how much a service dog would change his life, and now that we have Henry. Well, he is just this beam of joy and intelligence. He has a calming effect on all of us. Because raising Daniel in the sense of surviving financially is stressful. Painful. and just plain crappy sometimes. Henry, has lightened the load, except for the vet bills and the expensive dog food.
History. Loss. Pain. Shock. Grief. The sun comes up, the sun goes down. We who have faith believe that God is holding us up, somehow, as we say good bye. Like we did to our friend Ryan last week. Daniel's only friend in school. So soon. Too soon. And I am no longer questioning if Daniel is mentally aware when changes happen, I am certain that he is aware. He has missed Ryan so much. And the energy from that wonderful boy is now in another form.
So here, on our road, on Bennetts Bridge Road, in Sandy Hook, CT we have experienced 9/11/01, me being terminated because I had a disabled son, financial hardship in great form, countless surgeries for Daniel, seizures, pneumonias, many late night 911 calls, the loss of dear dear Brennan, the loss of my brother in spirit, Ed Muratti, more sickness and exhausting sleep deprivation, and December 14 of last year. And now, most recently, the loss of our friend Ryan, also a Newtown student now in Heaven.
So we release an orange balloon into the sky. We see the balloons marking special birthdays. We cry. We try to be joyful. It's really pretty damn fucking confusing for me, most of the time. I'm happy, I'm sad, I'm inspirational, I need help, and I do not have a choice. I must get up. I must change that diaper and smile at the sunshine filled boy's face. And carry on. Because I believe that if we do not live our life with JOY then evil wins.
And joy, is a part of history too. Far more than we give it credit for. That is why I do what I do. I am a Mom, with a goal of happiness for the future of my family. I know its a big pipe dream to think we will ever rise above the clog of beaurocracy and neediness, but as long as I see that smile it puts wood on my fire.
How do you perceive history. Sandy Hook, CT has become somewhat of an anomoly. And I end this by saying that losing a child or a close family member is horrible. And the pain still feels fresh forever, and prayers are needed. For those who are quietly suffering from what one evil moment in time did to shatter their lives.
