Sunday, November 30, 2014
Wednesday, November 26, 2014
Monday, November 24, 2014
When Daniel turned 17 years old.....
On November 22, 2014 my son Daniel turned 17 years old. Unlike most kids, having a birthday for Daniel has always been a challenge for me. He doesn't eat via mouth, so food is not logical. Gifts? Well we can get him things he needs, but he isn't really cognizant of what he needs. We sing to him, he likes that. We give him balloons, he loves balloons. It's not typical.Daniel is not able to speak. But we know he loves to watch and look at everything. The mall, in our case, the Danbury Mall in Danbury CT is his favorite spot to just take in the sensations, sights, sounds, smells, etc. He goes into this really happy state when we take him into the mall.
So on his birthday my husband John, son Thomas, Daniel and I walked around in the mall. We ran some errands, had some food, but the main purpose was for Daniel to enjoy being at the mall.
Last year, when he turned 16, he received over 800 cards from all over the world as a part of a "card shower" that we had started. It then turned into gifts, and visits from many people who just wanted him to know that they loved him. It was honestly, one of the most amazing things I have ever experienced, the opening of the mailbox daily to see piles of cards and pictures. Wonderful. This year we didn't do a card shower, I really just have been so incredibly busy and overwhelmed.
And Daniel received two cards, one from his grandparents, and one from his Best Buddy, Ryan Williams, who we have recently become friends with through the best Buddies program at Newtown High school. Ryan also brought Daniel a Newtown Marching Band and Guard sweatshirt so he could wear it when he goes to watch Thomas. That was really sweet, Ryan and his Mom visited for a while, and it was a nice visit. He's a great kid.
Special needs children like Daniel, do not have the ability to ask for anything, They can't make a list, and stress out your financial capabilities. Daniel is sweet, and quiet. He asks for absolutely nothing but finds joy in being with people. Sometimes, he doesn't react and it seems as if he is just staring off into space looking at the ceiling. Well, he probably is, but he is most definitely aware of the fact that people are with him.
And there is the mother guilt. "I didn't do enough for him", "I should have done more for him"!!!
After all, the fact that he has been alive and with us for 17 years far outweighs the odds they set for him when he was a baby. He is a miracle. He is a great teacher of many many lessons. He receives love so willingly and looks at you with eyes that are deep and probing and gentle.
My life is completely dedicated to Daniel. Yes... don't get that wrong... Yes I am dedicated to my entire family, however, they have abilities and independence. Daniel however, needs someone to be his everything. To arrange everything. To monitor, everything. To manage everything. That's me. Julie Hasselberger. I am Daniel's Mom.
Did I do enough for his birthday by surrounding him with balloons and taking him to the mall? I don't know. I don't know what "enough" is for Daniel. I just know that I love him so very much.So what, it was quiet. We heard from Glen Schallman, with a lovely "Happy Birthday" song, and from the teachers and kids at school, who also said Happy birthday in a video. His best buddy visited. And on face book probably a hundred Happy Birthday Daniel wishes, but he can't read, so I have to read them to him.
He is 17 years old. For me... its incredible and I want to shout it out loud to the world. But it seems as though over time, as special needs children get older, the world just isn't listening anymore. The world has grown weary of helping, hearing, caring, being there.
THAT is why Daniel has me. I will never stop being his completely devoted Mommy. Everything else takes a back seat. He matters the most. And my role of Mommy to Daniel, AND Sarah, AND Thomas, continues to remain the focus of my life. I wouldn't choose anything else.
Special needs children rarely have friends. When they have a birthday, it seems as though each year people care less and less. It was so quiet on November 22, 2014. But, Daniel turned 17. And he smiled alot. He knows we love him.
Life is just that way.
Watch this video from our you tube channel, "Julie Hasselberger" Daniel...goes to the bone doctor, every day is a new adventure.
Wednesday, November 12, 2014
Sunday, November 2, 2014
A QUIET BIRTHDAY
John William Hasselberger turns 48
Happy Birthday to my husband
Reflecting on life in the future with Daniel
November 1, 2014
The start of a new month, and a sample of what the future has in store, I suppose. With both of my other children away, it was just John, Daniel and I in the house this weekend. The quiet is both relaxing and unsettling at the same time.
Cold air blasts around the leaky windows and leaves have once again made a blanket of mess on the lawn. I am reminded of the work that needs to be done on this house that I just can't afford. I am suffering from terrible sinus headaches and it seems that the bad weather is truly on its way. John turned 48, and we really had an uneventful day just trying to buy him boots took energy. We never bought him boots because he is one man who is hard to please, and has buyers remorse. He is a funny simple guy with a giant sarcastic sense of humor and self battles with controlling anger and fighting his own demons. He's been calm and pleasant lately and that makes me very happy.
We still still love each other very much.
I wonder what life will be like when Daniel is older and we are older. Where will we be? November is always a pivotal month for me. I don't look forward to the holidays, because its completely materialized, but I do look forward to being together with my family. We don't often leave our home anymore, because having a teenager who is severely disabled makes visits to other people's homes quite difficult. No ramps, needing to change him, screaming meltdowns, positional discomfort etc. Long drives are hard on him, and to drive him three hours to a place where he can only sit in one spot in his wheelchair while everyone else eats and talks, makes me feel sad for him. So as the years have progressed, we much prefer to arrange for a nurse on at least part of the holiday, and just have it here at home. Very few of my family members or John's actually come to visit. It breaks my heart because I am the social extrovert, but I can't put Daniel through the travelling trauma. So what has happened? We have cousins, and even a grand niece that we have not yet met. Relatives have just "continued along" and not included us, because everyone just assumes we are not able to participate.
That being said, I have no ill feelings towards anyone related to us, I know everyone has their own bundle of things to do and places to go. Thank goodness for face book, because I would know absolutely nothing about my cousins in distant states. I've tried to communicate with most of them, but only three actually reply in any depth. I have accepted that we are, in many ways, like outcasts, due to the different type of life we live. It does not mean we are unhappy, but we are limited in what we can do, and where we can go.
So we carry on in quiet. Surrounded by the comforts of home. Quietly separated from the world where normal "mobile" live in our limited capacity situation. Keeping Daniel happy and healthy takes alot of energy. Ensuring that Sarah and Thomas get as much love and support as we can humanly give them. Friends in our local community provide so much kindness and love. If I needed anything, and posted it on line or in the Bee, someone in this town would make it happen. And sometimes we do small random acts of kindness ourselves, just to give back in some way.
Anticipating the holidays, also brings memories of sadness and loss here at home, so sometimes quiet reflection isnt a bad thing.
Being the Mom of a child who can not speak, or walk, or talk, will forever leave me curious as to what is going on inside his head. That sparkly smile just melts my heart.
John had a very quiet birthday. He is ok with that. On facebook, people go to wonderful Halloween parties, our to fancy restaurants, and have fun time with family. I would have once loved to get all dressed up and go out somewhere fun. But nurses leave at 5 on weekends. That is my reality. As I have come to accept it, I have let go of wanting to do what the "normal free mobile non disabled" world can do, and I have accepted that the quiet love, and necessary care giving is God's calling for me. I am lucky to have my son still with me.
So it was quiet yesterday, and today. I will be glad when it is January and we are moving towards the Spring. I will invite many people to come an visit for birthdays this month, for Thanksgiving, for Christmas, but few if any will be able to make it. We are not exactly close, or on anyones priority list, except for our immediate family.
Sarah turns 19 and Daniel turns 17 this month. So much to think about. We are driving along a bumpy road in an old car, we hit pot holes and big cracks, that is the metaphor for my life. But we don't stop because we know that our destination is going to be the most incredible fantastic place. And the road will eventually stop being bumpy.
Happy Birthday John.
Happy Birthday to my husband
Reflecting on life in the future with Daniel
November 1, 2014
The start of a new month, and a sample of what the future has in store, I suppose. With both of my other children away, it was just John, Daniel and I in the house this weekend. The quiet is both relaxing and unsettling at the same time.
Cold air blasts around the leaky windows and leaves have once again made a blanket of mess on the lawn. I am reminded of the work that needs to be done on this house that I just can't afford. I am suffering from terrible sinus headaches and it seems that the bad weather is truly on its way. John turned 48, and we really had an uneventful day just trying to buy him boots took energy. We never bought him boots because he is one man who is hard to please, and has buyers remorse. He is a funny simple guy with a giant sarcastic sense of humor and self battles with controlling anger and fighting his own demons. He's been calm and pleasant lately and that makes me very happy.
We still still love each other very much.
I wonder what life will be like when Daniel is older and we are older. Where will we be? November is always a pivotal month for me. I don't look forward to the holidays, because its completely materialized, but I do look forward to being together with my family. We don't often leave our home anymore, because having a teenager who is severely disabled makes visits to other people's homes quite difficult. No ramps, needing to change him, screaming meltdowns, positional discomfort etc. Long drives are hard on him, and to drive him three hours to a place where he can only sit in one spot in his wheelchair while everyone else eats and talks, makes me feel sad for him. So as the years have progressed, we much prefer to arrange for a nurse on at least part of the holiday, and just have it here at home. Very few of my family members or John's actually come to visit. It breaks my heart because I am the social extrovert, but I can't put Daniel through the travelling trauma. So what has happened? We have cousins, and even a grand niece that we have not yet met. Relatives have just "continued along" and not included us, because everyone just assumes we are not able to participate.
That being said, I have no ill feelings towards anyone related to us, I know everyone has their own bundle of things to do and places to go. Thank goodness for face book, because I would know absolutely nothing about my cousins in distant states. I've tried to communicate with most of them, but only three actually reply in any depth. I have accepted that we are, in many ways, like outcasts, due to the different type of life we live. It does not mean we are unhappy, but we are limited in what we can do, and where we can go.
So we carry on in quiet. Surrounded by the comforts of home. Quietly separated from the world where normal "mobile" live in our limited capacity situation. Keeping Daniel happy and healthy takes alot of energy. Ensuring that Sarah and Thomas get as much love and support as we can humanly give them. Friends in our local community provide so much kindness and love. If I needed anything, and posted it on line or in the Bee, someone in this town would make it happen. And sometimes we do small random acts of kindness ourselves, just to give back in some way.
Anticipating the holidays, also brings memories of sadness and loss here at home, so sometimes quiet reflection isnt a bad thing.
Being the Mom of a child who can not speak, or walk, or talk, will forever leave me curious as to what is going on inside his head. That sparkly smile just melts my heart.
John had a very quiet birthday. He is ok with that. On facebook, people go to wonderful Halloween parties, our to fancy restaurants, and have fun time with family. I would have once loved to get all dressed up and go out somewhere fun. But nurses leave at 5 on weekends. That is my reality. As I have come to accept it, I have let go of wanting to do what the "normal free mobile non disabled" world can do, and I have accepted that the quiet love, and necessary care giving is God's calling for me. I am lucky to have my son still with me.
So it was quiet yesterday, and today. I will be glad when it is January and we are moving towards the Spring. I will invite many people to come an visit for birthdays this month, for Thanksgiving, for Christmas, but few if any will be able to make it. We are not exactly close, or on anyones priority list, except for our immediate family.
Sarah turns 19 and Daniel turns 17 this month. So much to think about. We are driving along a bumpy road in an old car, we hit pot holes and big cracks, that is the metaphor for my life. But we don't stop because we know that our destination is going to be the most incredible fantastic place. And the road will eventually stop being bumpy.
Happy Birthday John.
Saturday, November 1, 2014
Hippies and the Blues Brothers
From picking up Tinker's ashes to Daniel's Halloween out fits! Dealing with life through severe headaches is not fun, but I got an appointment. Funny when they put you on hold for 10 minutes.. lol. Hope everyone is doing well. Please subscribe, remember that my channel is to ultimately help us with Daniel's life. Thank you!!
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