Today is October 29, 2012 and we are all sitting here , in our house, awaiting what is to arrive. This storm they are calling Frankenstorm. A giant mess of Hurricane Sandy and a Nor easter combined. Fearful that we will lose our power, but we are really at the mercy of the weather today.
If the power goes out, I have 24 hours until Daniel's feeding pump runs out. Then I'll have to figure something out.
Its going to be alot worse in places other than Sandy Hook, CT. But all I know is this, school is cancelled for two days, and even John's job has closed.
Its 10:44AM and so far nothing but alittle rain, and gusts of wind...making a big mess out there with so many leaves.
Sigh. I am needed by Daniel. Will be taking pictures if anything interesting happens. Peace.
Oh yes, It is assumed and presumed that this will be the second year without a Halloween due to a mess caused by a freaky storm. Fascinating weather.
Monday, October 29, 2012
Friday, October 19, 2012
GRATITUDE and Choosing to be strong
October 19, 2012
Here I sit, staring out the window at pouring rain and Fall leaves and nothing but the sound of my computer and the wind. The kids are all at school. John is at work. Even the cats are sleeping. Its pretty much my favorite time of the day. Should I be exercising right now? Probably. But my heart and mind are both feeling heavy today and I felt like writing.
I am working on thank you letters for so many people, for so many reasons. I have a pile of notes, prayers, cards, gifts, emails, and more that I receive almost on a continual basis. Why? Well, because I choose to reach out and share my story. I choose to stay as strong as I can during this very difficult journey that goes down a long endless winding road. And the road never seems to have an end, or any direction, its just a continuous process of pain and recovery, pain and recovery, pain and recovery. There are some amazing people that surround me and yet I get sad and feel so lonely, so often. Then I take out those cards, notes, prayers, letters, etc. and I know that I am not alone. Piles of them, like.....
"We were moved by your email Julie, we will pray for Daniel and his upcoming surgery. It's hard to imagine what you have through and how strong your family must be. I wish we knew of more resources that can help you. Best of luck and keep on fighting for him. Sincerely... XXXXX"
"Dear Julie, We wish Daniel the best. Kudos to you for being brave enough to reach out! We will be praying for Daniel's health. God Bless Daniel and his entire family."
"Dear Neighbor, My wife and I heard of your struggles through a friend. Our hearts go out to you and Daniel, and all of you. We live here in Newtown, but not near you - but we are neighbors because we believe in the healing and comforting power of faith. Please accept these gifts, (a beautiful CD of hymns, and some money) and know that there are people all around you who care. God Bless. Anonymous"
"Dear Julie, I read your email and found it hard not to want to help you and Daniel out. I believe in the nature of good people. I hope that if I ever find myself in a hard situation that I would find comfort in my community as well!! Best wishes and thoughts" XXXX
"My name is XXXXX, I am a Newtown resident, and firefighter, as well as Dad to XXXX, who was a STARR volunteer last year. I recently learned of Daniel's fight, and your family's struggles, and wanted to help as best I could. I talked to XXXX about Daniel, and she glowed when she told me. "That with all this boy has to deal with, he always has a big SMILE" he has impacted XXXX in ways he and you will never know. He has taught my daughter life lessons she never could have learned at age 12, had she not met Daniel, be proud of that, in his way he is touching and changing lives. I can't even imagine what you deal with, but I am inspired by your commitment, love, and appreciation for Daniel. Please accept my gift in the spirit of appreciation for the lessons taught to my daughter by Daniel, and the lessons taught to me by your family's strength and courage. A friend of mine went on a mission to Lourdes France and brought me back water believed to be have been responsible for miracles in the past when bathed in. I would like Daniel to have this, and pray that it helps lead to a miracle for him. With all my heartfelt compassion and prayers..XXXX"
Call me crazy, but these are valuable and wonderful notes. Most people reach out in ways that are not financial, which is more valuable to me. But I am simply blessed to be in receipt of love and acceptance of my son. I choose to be strong. To keep my head up high. To work through all of these challenges and do the absolute best job I can to provide a good quality of life for my children...all of my children.
If you are reading this, and you are one of the people that has connected with me, and shared compassion with me. You have NO IDEA how much that means to me. On the journey down the endless endless road, friendly faces and kind words are like water to a marathon runner.
Other parents of disabled and medically fragile children (I know many) all share the common need for people to understand and accept their child and their situation.
Choose to be strong. Choose to pursue happiness at every cost. Be resilient and love your neighbors. No one knows when something tragic, difficult, painful is going to happen to them. But people, people are what help you survive.
I say thank you. choose to be strong because of you, and because of my faith. The road is about to become very dark and scary over the next few months. I believe now, more than yesterday, that I will make it.
Julie Hasselberger
Here I sit, staring out the window at pouring rain and Fall leaves and nothing but the sound of my computer and the wind. The kids are all at school. John is at work. Even the cats are sleeping. Its pretty much my favorite time of the day. Should I be exercising right now? Probably. But my heart and mind are both feeling heavy today and I felt like writing.
I am working on thank you letters for so many people, for so many reasons. I have a pile of notes, prayers, cards, gifts, emails, and more that I receive almost on a continual basis. Why? Well, because I choose to reach out and share my story. I choose to stay as strong as I can during this very difficult journey that goes down a long endless winding road. And the road never seems to have an end, or any direction, its just a continuous process of pain and recovery, pain and recovery, pain and recovery. There are some amazing people that surround me and yet I get sad and feel so lonely, so often. Then I take out those cards, notes, prayers, letters, etc. and I know that I am not alone. Piles of them, like.....
"We were moved by your email Julie, we will pray for Daniel and his upcoming surgery. It's hard to imagine what you have through and how strong your family must be. I wish we knew of more resources that can help you. Best of luck and keep on fighting for him. Sincerely... XXXXX"
"Dear Julie, We wish Daniel the best. Kudos to you for being brave enough to reach out! We will be praying for Daniel's health. God Bless Daniel and his entire family."
"Dear Neighbor, My wife and I heard of your struggles through a friend. Our hearts go out to you and Daniel, and all of you. We live here in Newtown, but not near you - but we are neighbors because we believe in the healing and comforting power of faith. Please accept these gifts, (a beautiful CD of hymns, and some money) and know that there are people all around you who care. God Bless. Anonymous"
"Dear Julie, I read your email and found it hard not to want to help you and Daniel out. I believe in the nature of good people. I hope that if I ever find myself in a hard situation that I would find comfort in my community as well!! Best wishes and thoughts" XXXX
"My name is XXXXX, I am a Newtown resident, and firefighter, as well as Dad to XXXX, who was a STARR volunteer last year. I recently learned of Daniel's fight, and your family's struggles, and wanted to help as best I could. I talked to XXXX about Daniel, and she glowed when she told me. "That with all this boy has to deal with, he always has a big SMILE" he has impacted XXXX in ways he and you will never know. He has taught my daughter life lessons she never could have learned at age 12, had she not met Daniel, be proud of that, in his way he is touching and changing lives. I can't even imagine what you deal with, but I am inspired by your commitment, love, and appreciation for Daniel. Please accept my gift in the spirit of appreciation for the lessons taught to my daughter by Daniel, and the lessons taught to me by your family's strength and courage. A friend of mine went on a mission to Lourdes France and brought me back water believed to be have been responsible for miracles in the past when bathed in. I would like Daniel to have this, and pray that it helps lead to a miracle for him. With all my heartfelt compassion and prayers..XXXX"
Call me crazy, but these are valuable and wonderful notes. Most people reach out in ways that are not financial, which is more valuable to me. But I am simply blessed to be in receipt of love and acceptance of my son. I choose to be strong. To keep my head up high. To work through all of these challenges and do the absolute best job I can to provide a good quality of life for my children...all of my children.
If you are reading this, and you are one of the people that has connected with me, and shared compassion with me. You have NO IDEA how much that means to me. On the journey down the endless endless road, friendly faces and kind words are like water to a marathon runner.
Other parents of disabled and medically fragile children (I know many) all share the common need for people to understand and accept their child and their situation.
Choose to be strong. Choose to pursue happiness at every cost. Be resilient and love your neighbors. No one knows when something tragic, difficult, painful is going to happen to them. But people, people are what help you survive.
I say thank you. choose to be strong because of you, and because of my faith. The road is about to become very dark and scary over the next few months. I believe now, more than yesterday, that I will make it.
 |
| Enjoying Sunshine at an October football game |
Friday, October 5, 2012
What's so Funny? Or can't you help it??
Random laughing episodes.
Trying to decide why Daniel is having repeated episodes of non stop laughing. They could be Gelastic seizures and instead of discussing it... I'll show you via this video..
Some things that I deal with are pretty clear cut. But if a new type of seizure emerges, and disguises itself as joy and laughter, then how would we know. Well, he could be sound asleep and then he wakes up laughing and thrashing. He does this to the point where he wheezes and gets all sweaty.
This week I have been very sick, so I've spent some time in bed watching video footage of Daniel.
Warning there is one disturbing video of Daniel getting upset before he has to get on the bus.
I have sent video footage to Dr. Francine Testa, at Yale New Haven Hospital, our Neurologist...and she is going to review it and let me know what she thinks.
Until then, I'll keep watching him very closely... .
..
Trying to decide why Daniel is having repeated episodes of non stop laughing. They could be Gelastic seizures and instead of discussing it... I'll show you via this video..
Some things that I deal with are pretty clear cut. But if a new type of seizure emerges, and disguises itself as joy and laughter, then how would we know. Well, he could be sound asleep and then he wakes up laughing and thrashing. He does this to the point where he wheezes and gets all sweaty.
This week I have been very sick, so I've spent some time in bed watching video footage of Daniel.
Warning there is one disturbing video of Daniel getting upset before he has to get on the bus.
I have sent video footage to Dr. Francine Testa, at Yale New Haven Hospital, our Neurologist...and she is going to review it and let me know what she thinks.
Until then, I'll keep watching him very closely... .
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