Friday, December 26, 2014
Monday, December 22, 2014
Tuesday, December 9, 2014
Saturday, December 6, 2014
Deck the Halls with Bleach Spray, a special needs Mom has a wake up call
On Tuesday, December 2, 2014 Daniel was happy, smiling, and enjoying a day at the mall with me. Everything was normal. On Wednesday he went to school, and didn't seem right. He was having unusually frequent bowel movements. By the time 6pm rolled around he was going every 10 minutes and he was extremely dehydrated. I called the GI service at Yale, and they recommended that I take him to the ER for hydration via IV. Which I did. By the time we got to Danbury, his bottom was red and painful. The waiting room was literally PACKED. While we were waiting Daniel had a bowel movement and it was so painful that he briefly passed out, which bought us a ride to the top of the waiting list.
Fast forward to 1:00am and the doctor basically told me I could take him home and give him fluids through the g tube. So I did that. I was extremely exhausted, and stayed up all night on Wednesday. On Thursday morning the stools were worse, and he had fever. I called GI again and they told me to take him to the "pediatrician" to have her "assess" him for dehydration, if she felt he needed to be seen at the hospital they would have him admitted. She didn't think he needed to go to the ER so she gave me anti fungal ointment for the rash and said to "wait it out", she said, "it will pass in another day or so". Friday morning, it was far far worse. The pediatrician had told me to call her by 8 am so I called over there. They asked me to come get a bunch of things to take a stool culture. It was really gross, but we got the nasty poop into the vials and I rushed it back over to the doctors office.
The GI service at Yale had also told me to restart Daniel's regular feeds at 75% strength. Which we did. After a few hours, he was in distress from stomach pain and the rash was horrific. The stools were literally non stop. I called again. The GI service started to suggest I take him to Danbury again and I said no, I am bringing him to Yale. They agreed, and I packed up some bags and got Daniel and myself to Yale New Haven Children's hospital. We went in through the emergency department, but got quickly admitted. Daniel was severely dehydrated.
Friday night into Saturday he was in tremendous pain from the rash, and was on complete belly rest, having only IV fluids. Saturday afternoon I got a call that he tested positive for C Dif.
I think we could have bi passed all of this back and forth, see the pediatrician, go to Danbury, go home, bullshit, and just gone straight to Yale and had a culture right away. Instead, he is 4 days deep into the worst rash I have ever seen.
In the midst of Daniel being sick so many things were affecting me. My house stopped having heat and hot water on Thursday, I was unable to go to work and I now I have lost income with Christmas around the corner, my van went dead on me twice while driving to New Haven, and I am away from Thomas, John, Henry and Theo.
Sitting alone in the room with Daniel asleep, Friday night, I felt the urge to cry. A wave of depression rushed over my head and I had never felt more alone that I did sitting in that room. The holidays used to be a time of friends, food, dancing, music, laughter, sharing, loving, caring. Now I can't even go to the one little Christmas function we were invited to, Breakfast with Santa for Dream come true. That was this weekend, on Sunday. I feel like the "normal" world passed me by like a big cruise ship full of smiling people, leaving me alone on the "island of special needs Moms". We don't get to be free spirited and joyful, and crafty and creative... especially when we have sick disabled children. Or worse, when we are in the midst of writing a eulogy for a deceased child, or grieving the loss of a child. We live in a clinical world, where managing meds, appointments, schedules, doctors, therapies etc. takes hold of our free spirit and nails it down so it can't move. So in our state of being captive to this life, we learn to love and adapt as best we can. We want to put blinders on to the people who were luckier than we were when they were blessed with a healthy family. We don't want to feel envious at the families with plenty of money and time to have social functions, vacations, and plain old jolly old lives. We want to scream and shout when people are gawking at us in public, because its hard enough to find a place to park, and let the wheelchair down, let alone have our wheelchair bound son gawked at by a woman in a Christmas sweater coming out of the Michael Kors store. And we want our child to be accepted and loved, not stared at like a freak show.
The hospital is a place where health care workers and doctors actually speak a language we completely understand and we can reiterate our child's medical history down to every little detail and date. And yet, as I sit here I can not remember the last time I did anything socially, or freely without worry. I worry all of the time. I have for 17 years. I see lights going up, and Christmas decorations, and trees on top of cars. I feel sad. I miss badly needed work, and my income goes down the toilet, and then I have to pay for parking, and food, and my furnace repair, and my van needs work now.
Christmas what???
Back to Daniel, Saturday afternoon the doctor on call for the pediatrician called me to tell me that Daniel tested positive for C Dificile. A very nasty and contagious bacterial infection of the intestines. So now they have some answer as to why he is so sick. I don't know how he caught it, but the main thing is I am right now, sitting here, writing, in a chair, next to a bed, in a hospital room while my child is sick and moaning.
Even when things settle, I was just reminded again, that I will continually get knocked off of the complacency pedestal. I am living on the island of misfit toys. Wondering if Santa will remember us. I don't own a cocktail dress anymore. I don't own high heel shoes, or sparkly jewelry. I change diapers and do laundry. We work and struggle to keep the roof over our head. We love, we laugh, we smile, we joke, we live as best we can, watching as the lights of the ship of "normal life" sails off with its joyful holiday music playing and scents of gourmet dinners.
Daniel is smiling watching Despicable Me 2, and somewhere a baby is crying. I can hear the sound of life star helicopter landing on the roof right now. I know that I am not alone. I accept my world, and I love my children more than my own life. I don't know if I will ever attend a holiday function again, or if I ever want to, because I have been jolted, jarred, emotionally scarred, traumatized, and given the most infinite and incredible love at the same time. I'm different than you. You know who you are. And I am happy for you that don't have to live on the island of misfits, because you wouldn't fit in here.
So I will keep doing the best that I can. Managing this life and this family as best as a mother knows how. I will try my best not think back on what I "thought" life should be like as a Mommy, because that is definitely NOT helpful. This is a way of life. This is a way of love. This is a way of being. This is a way of adapting. This is my way. This is what being Daniel's Mom is all about. This is who I am and my typical children, and my husband are all equally living a life adapted and affected by this guy name Daniel. The one most affected though, is Mom. My world stood still on the day Daniel was diagnosed, and then it exploded into millions of shards of life. Then they reformed themselves into an altered reality. And God spoke to me somehow, and said, "here, this is for you. you are going to have to live here. Don't worry, you will figure it out."
So it goes. C Dif. thanks for the holiday hospital wake up call. Deck the halls with bleach spray.
Fast forward to 1:00am and the doctor basically told me I could take him home and give him fluids through the g tube. So I did that. I was extremely exhausted, and stayed up all night on Wednesday. On Thursday morning the stools were worse, and he had fever. I called GI again and they told me to take him to the "pediatrician" to have her "assess" him for dehydration, if she felt he needed to be seen at the hospital they would have him admitted. She didn't think he needed to go to the ER so she gave me anti fungal ointment for the rash and said to "wait it out", she said, "it will pass in another day or so". Friday morning, it was far far worse. The pediatrician had told me to call her by 8 am so I called over there. They asked me to come get a bunch of things to take a stool culture. It was really gross, but we got the nasty poop into the vials and I rushed it back over to the doctors office.
The GI service at Yale had also told me to restart Daniel's regular feeds at 75% strength. Which we did. After a few hours, he was in distress from stomach pain and the rash was horrific. The stools were literally non stop. I called again. The GI service started to suggest I take him to Danbury again and I said no, I am bringing him to Yale. They agreed, and I packed up some bags and got Daniel and myself to Yale New Haven Children's hospital. We went in through the emergency department, but got quickly admitted. Daniel was severely dehydrated. Friday night into Saturday he was in tremendous pain from the rash, and was on complete belly rest, having only IV fluids. Saturday afternoon I got a call that he tested positive for C Dif.
I think we could have bi passed all of this back and forth, see the pediatrician, go to Danbury, go home, bullshit, and just gone straight to Yale and had a culture right away. Instead, he is 4 days deep into the worst rash I have ever seen.
In the midst of Daniel being sick so many things were affecting me. My house stopped having heat and hot water on Thursday, I was unable to go to work and I now I have lost income with Christmas around the corner, my van went dead on me twice while driving to New Haven, and I am away from Thomas, John, Henry and Theo.
Sitting alone in the room with Daniel asleep, Friday night, I felt the urge to cry. A wave of depression rushed over my head and I had never felt more alone that I did sitting in that room. The holidays used to be a time of friends, food, dancing, music, laughter, sharing, loving, caring. Now I can't even go to the one little Christmas function we were invited to, Breakfast with Santa for Dream come true. That was this weekend, on Sunday. I feel like the "normal" world passed me by like a big cruise ship full of smiling people, leaving me alone on the "island of special needs Moms". We don't get to be free spirited and joyful, and crafty and creative... especially when we have sick disabled children. Or worse, when we are in the midst of writing a eulogy for a deceased child, or grieving the loss of a child. We live in a clinical world, where managing meds, appointments, schedules, doctors, therapies etc. takes hold of our free spirit and nails it down so it can't move. So in our state of being captive to this life, we learn to love and adapt as best we can. We want to put blinders on to the people who were luckier than we were when they were blessed with a healthy family. We don't want to feel envious at the families with plenty of money and time to have social functions, vacations, and plain old jolly old lives. We want to scream and shout when people are gawking at us in public, because its hard enough to find a place to park, and let the wheelchair down, let alone have our wheelchair bound son gawked at by a woman in a Christmas sweater coming out of the Michael Kors store. And we want our child to be accepted and loved, not stared at like a freak show.
Christmas what???
Back to Daniel, Saturday afternoon the doctor on call for the pediatrician called me to tell me that Daniel tested positive for C Dificile. A very nasty and contagious bacterial infection of the intestines. So now they have some answer as to why he is so sick. I don't know how he caught it, but the main thing is I am right now, sitting here, writing, in a chair, next to a bed, in a hospital room while my child is sick and moaning.
Even when things settle, I was just reminded again, that I will continually get knocked off of the complacency pedestal. I am living on the island of misfit toys. Wondering if Santa will remember us. I don't own a cocktail dress anymore. I don't own high heel shoes, or sparkly jewelry. I change diapers and do laundry. We work and struggle to keep the roof over our head. We love, we laugh, we smile, we joke, we live as best we can, watching as the lights of the ship of "normal life" sails off with its joyful holiday music playing and scents of gourmet dinners.
Daniel is smiling watching Despicable Me 2, and somewhere a baby is crying. I can hear the sound of life star helicopter landing on the roof right now. I know that I am not alone. I accept my world, and I love my children more than my own life. I don't know if I will ever attend a holiday function again, or if I ever want to, because I have been jolted, jarred, emotionally scarred, traumatized, and given the most infinite and incredible love at the same time. I'm different than you. You know who you are. And I am happy for you that don't have to live on the island of misfits, because you wouldn't fit in here.
So I will keep doing the best that I can. Managing this life and this family as best as a mother knows how. I will try my best not think back on what I "thought" life should be like as a Mommy, because that is definitely NOT helpful. This is a way of life. This is a way of love. This is a way of being. This is a way of adapting. This is my way. This is what being Daniel's Mom is all about. This is who I am and my typical children, and my husband are all equally living a life adapted and affected by this guy name Daniel. The one most affected though, is Mom. My world stood still on the day Daniel was diagnosed, and then it exploded into millions of shards of life. Then they reformed themselves into an altered reality. And God spoke to me somehow, and said, "here, this is for you. you are going to have to live here. Don't worry, you will figure it out."
So it goes. C Dif. thanks for the holiday hospital wake up call. Deck the halls with bleach spray.
Tuesday, December 2, 2014
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!!
Friday, October 31, 2014
Tuesday, October 28, 2014
Sunday, October 26, 2014
Thursday, October 23, 2014
Sunday, October 19, 2014
Thursday, October 9, 2014
Monday, October 6, 2014
It's Raining Pillows
I must say, stress is absolutely ridiculously a drag. But I am facing a week for my family... 3 dentist appointments, 1 ortho appointment, 1 physiatry appointment, jazz band, marching band, dog training, and yadda yadda yadda... OH also, spinal exrays and check up at Yale on Thursday for Daniel too. Sheesh. And I am supposed to...work??? It's a life that continually pushes you to the brink. I just really need a hug, and a break. God has given us this beautiful Fall. I'm grateful for those little miracles I see everywhere. Please come over to you tube and subscribe to our channel....we are really trying to grow. Much love and peace.
Sunday, October 5, 2014
Marching Bands and Unfriendly Golf carts
As life for everyone else moves along, so too does life for Daniel. Thomas is now happily acclimated to his position in the Newtown High School Marching Band. John and I have been enjoying our time together with Daniel, as we venture out to see the band and guard perform. Through rain and power outages, so far, we have remained dedicated parents!! Of course, technically our son is not even in high school, he is still an 8th grader, but he sure doesn't seem like a typical 8th grader. 
The diversion of the music, and Daniel's total wonder and amusement of the people, lights, music, whatever... makes it fun. There was once a day that I played in my high school marching band. I played the flute and piccolo and music was the only place that I could go to escape stress and build my self esteem. 
When we left the stadium at Trumbull high school, we had a really good laugh because a "golf cart" that they were using to transport disabled persons to and from the parking lot, was parked right up next our van blocking access to our lift. It just seemed so incredibly funny to us, I am not really sure why. Life is full of ironic twists sometimes. I imagine I was probably one of the few people who stopped and talked with the EMT's, and stood and vlogged. I have become completely unaware of whether or not people are watching me talk to myself into my camera. I actually find humor in the looks I get. 
Newtown came in second place at this competition. Norwalk High School has an incredible band, they are apparently our nemesis. I'm just in it for the ride. Every single one of these kids are working so hard. And no child who has the ability to perform should ever be taken for granted. That is how I feel anyhow.Enjoy the video. Warmest regards from my heart to yours.
Thursday, October 2, 2014
Our NY Jets Adventure, Thank You Marc Pintel!!!!!
Marc Pintel was a Hasselberger for a day!!!
This September we had a special event happen to our family. Marc Pintel, along with the Pintel Family Cancer Support Services provided tickets to the Jets Game on September 28, 2014 at Metlife Stadium. They purchased tickets for all five of us, and Marc worked extremely hard to make sure that the seats were all together in the wheelchair accessible area with access to the Lexus Clubhouse. It was very generous of them to provide access to this event for our entire family. Daniel Hasselberger is a 16 year old severely disabled and medically fragile young man. He was born with a devastating brain deformity called Polymicrogyria. Daniel's strongest ability is his acute vision and awareness of sights and sounds around him. He suffers from seizures, respiratory problems, stomach problems, can not speak, walk, and is fed by g tube only. He does however, have the most beautiful smile. So seeing that smile is like seeing the biggest and brightest star. His prognosis is unknown.
Marc Pintel also had a special sweatsuit made by Ursula, from Party planners. She didn't charge him for it, which was very kind of her. The sweat suit he wore had "Daniel's Number 1 fan" on the front and on the leg of the pants. On the back of his sweatshirt read "the Hasselberger Fund Rules". Marc took great pride wearing the sweat shirt and sweat pants at the game. It was very kind of Ursula to do this for Marc so he could represent Daniel and what he had done for our family. He was a "Hasselberger for the Day" on Sunday September 28th, even giving up an entire day he could have been spending with his son Spencer to spend it with the Hasselberger Family.
Additionally, prior to the game, Marc contact the NY Jets and asked them to send something special to Daniel. They sent him an autographed football, signed by #27 Dee Miliner. The Jets don't send out personalized footballs to everyone, so this was very special. We are going to put up a display case for this football and the many other nice things Daniel received at the game.
So we owe a very special thanks to Marc Pintel and the Pintel family, the New York Jets organization, Ursula from Party planners who made Marc's outfit, and everyone at Metlife Stadium as well who really went out of their way to help us.
Marc Pintel was extremely kind to provide this great experience to our entire family. We can't thank him enough, the Hasselberger Family enjoyed a beautiful day at the stadium, and the access to the Lexus Clubhouse made it very easy to care for Daniel. It was a wonderful day. Marc is a wonderful guy who wants to make the world a better place and wants to be inspiration to others.
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The Day of the Jets Game, September 28, 2014, by Julie, Daniel's Mom......
I had spent the prior evening preparing and planning what we would need for Daniel. Daniel is 100% G Tube fed, and has medication needs through out the day. He needs regular medication, and medication for nausea, anxiety, and seizures. I woke up at 5:30AM, and took a very quick shower, got Daniel's diaper changed, got him dressed (WE DIDN'T HAVE ANY GREEN CLOTHES OR JETS CLOTHES). Prepared his feeding pump and packed up two enormous bags of supplies for the day. John figured out our driving directions and filled a cooler with drinks.
John, Thomas, Daniel and I left our house in Sandy Hook, CT at 7:00AM. We drove on this beautiful sunny Fall day out to Staten Island, NY to Wagner College to pick up Sarah, who we had not seen since August. I wanted to cry when I saw her come out of the lobby and walk across the bridge. Sarah is 18, almost 19, and studying Arts Administration. We are so proud of her.
Once we had picked up Sarah, we were all together as a family, and my heart felt so happy. I separated my brain from all of the worries that were eating away at me, and chose to have a special time with my children. Readers, you have to understand, life with a severely medically fragile child pretty much prevents us from doing things together. It is very RARE that the 5 of us get to go and do something FUN, together. Very RARE indeed. While John works very hard to provide for the family, I work very hard managing a complicated child and a complicated mess of financial pressure. I try to work when I can, but its never enough. Caring for a disabled child puts pressures on a family that far exceed the number of words I can paint on this canvas. So lets focus back on the sunny day of our NY Jets adventure....
We arrived at MetLife Stadium, and immediately the excellent customer service started. The parking lot guy made sure we went right to the best Handicap spot available. We have an over sized Ford E250 Conversion van and it is difficult to park sometimes. I need to have the van close in case Daniel has seizure, illness, etc and we need to get him out. I laid Daniel out in the van, and changed his diaper, and made sure he was all set to go in. John said we looked like dogs in a sea of cats. We did not have any green on!!! Being from Sandy Hook, you think we would have. But we definitely didn't have any Jets clothing. I wish we did, everyone looked like they were having so much fun. People actually tailgate, cook meals, have fun, in the parking lot. That really happens!!! I've only seen it on TV.
When we proceeded to enter the stadium area, a very nice man in a suit, I wish I got his name, came up and led us personally through the gate and help get our things properly checked. Everyone was so friendly, and so helpful. The sun was very bright and it was 80 degrees with a simply perfect clear blue sky. What a blessing to be having fun on such a gorgeous day. John and Thomas played the "toss the football" game outside of the stadium and of course John my "Mr. Athletic" got the Ball through the hoop and won a prize. Thomas and John got to take a selfie, but I'm not sure where that picture went.
About that time I received a text message from my friend, Marc Pintel, who had made ALL of this possible for us, that he was arriving at the stadium. We went in and upstairs to the Lexus Clubhouse area. That place was awesome!! To be able to sit inside and see the stadium outside, so cool. They had TV screens everywhere. Honestly, we felt very humbled to be there, it was way more luxurious than I thought it would be. We found where our seats were and we all just stood there mesmerized by the stadium. We had never experienced a stadium before like that. I took Daniel and the kids and went to look for Marc, I found him eating his lunch wearing his "Daniel's #1 Fan" outfit. He looked great!! I couldn't quite put my finger on it, but something about him looked different. Later I found out he had lost 37 pounds and looked terrific. I was too mesmerized by the sweat suit Ursula from Party Planners had made for him to wear. So sweet.
The kids got to play some games and win prizes in the Lexus clubhouse. Daniel even got his picture taken with a couple of pretty cheerleaders. They got pins, headbands, gifts from spinning the wheel, etc. That was fun.
The game started at 1 and we were all very excited. Actress and singer Jesse James Decker sang the national anthem, and it gave me chills. The Jets were playing the Detroit Lions. Thomas and Sarah were watching the game intently, as was John. Daniel was looking all around, way up high mostly. But he wasn't his normal giddy happy self. He had a stomach ache, and twice that day I had to bring him to the family restroom where I could lock the door, put him on the floor and clean and change him. That was very difficult, and probably the only time during the day that I actually cried. Some things are just never easy no matter where I go. Changing a terrible poop diaper on a 16 year old is one of the difficulties that most people don't realize special needs moms go through. Sigh. It was rough, and I made the entire area smell so bad that a cleaning person came right in after us each time we went in. Made me feel like a jerk, but what else am I supposed to do? Oh well.
The seats we had were in the shade, so we had no worries about sun. We had $6.00 cokes and $5.00 waters, and after buying lunch I had no money left to buy the kids a souvenir t shirt... but they understood completely. Three cheeseburgers and fries, $75.00. John had wanted to put together a tailgate picnic, I should have listened to him!!! But it was something we would never get to do again.
The Jets lost the game, sadly, 17 to 24. But it was a great experience. Why was it great for Daniel? Not because he is able to understand the game, but because the sensory feeling of the roar of the crowd, the music, the lights, and even some fireworks when a touch down was scored really entranced him. I never quite know how Daniel is going to react to things, but he seemed very happy.
This Hasselberger family has been through hell and back repeatedly for 16 years. We have daily challenges that push me to the brink of sanity. I don't sleep nights, and Daniel's medical care is astronomical. John and I love each other very much, but the stress can eat away at even the best of relationships. We are coming up on our 22nd wedding anniversary October 3rd!! But where I am going here is, we seldom do anything as luxurious as a Football game at MetLife Stadium. The kids were so excited, as if we were going to a theme park! Just being together, makes us happy. Having Daniel in our life has taught us that family is so important. When we get together, and there isn't financial stress, or medical stress, or anxiety stress, or stress stress.... we get a chance to let our guards down a little bit, and laugh. That is the true gift.
So we had a beautiful gift of watching a football game at Metlife Stadium. It was a day where everyone was in good health, and a trip that seemed overwhelming, really wasn't.
Marc Pintel left the game a little bit early, so we took some group pictures and said our goodbyes. We left the Stadium about 4:00pm. Sarah was returned safely to her campus by 5:00pm and we hugged and kissed good bye. Then we drove back home from New York City to Sandy Hook,CT, picked up Henry the dog from Grandma and Poppa and went back to our life.
Our NY Jets adventure was a success. It is all because of Marc Pintel, and his wish to give the family a day of FUN.
Thank you to Marc Pintel, the Pintel family, the NY Jets, Ursula of Party Planners, and everyone who made this day a reality for us. There is no measure to the amount of gratitude we have for just a little relief and fun for a day.
Much love,
The Hasselberger Family: John, Julie, Sarah, Daniel, and Thomas
This September we had a special event happen to our family. Marc Pintel, along with the Pintel Family Cancer Support Services provided tickets to the Jets Game on September 28, 2014 at Metlife Stadium. They purchased tickets for all five of us, and Marc worked extremely hard to make sure that the seats were all together in the wheelchair accessible area with access to the Lexus Clubhouse. It was very generous of them to provide access to this event for our entire family. Daniel Hasselberger is a 16 year old severely disabled and medically fragile young man. He was born with a devastating brain deformity called Polymicrogyria. Daniel's strongest ability is his acute vision and awareness of sights and sounds around him. He suffers from seizures, respiratory problems, stomach problems, can not speak, walk, and is fed by g tube only. He does however, have the most beautiful smile. So seeing that smile is like seeing the biggest and brightest star. His prognosis is unknown. |
| MARC PINTEL AND DANIEL HASSELBERGER |
Additionally, prior to the game, Marc contact the NY Jets and asked them to send something special to Daniel. They sent him an autographed football, signed by #27 Dee Miliner. The Jets don't send out personalized footballs to everyone, so this was very special. We are going to put up a display case for this football and the many other nice things Daniel received at the game.
So we owe a very special thanks to Marc Pintel and the Pintel family, the New York Jets organization, Ursula from Party planners who made Marc's outfit, and everyone at Metlife Stadium as well who really went out of their way to help us.
Marc Pintel was extremely kind to provide this great experience to our entire family. We can't thank him enough, the Hasselberger Family enjoyed a beautiful day at the stadium, and the access to the Lexus Clubhouse made it very easy to care for Daniel. It was a wonderful day. Marc is a wonderful guy who wants to make the world a better place and wants to be inspiration to others.
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The Day of the Jets Game, September 28, 2014, by Julie, Daniel's Mom......
I had spent the prior evening preparing and planning what we would need for Daniel. Daniel is 100% G Tube fed, and has medication needs through out the day. He needs regular medication, and medication for nausea, anxiety, and seizures. I woke up at 5:30AM, and took a very quick shower, got Daniel's diaper changed, got him dressed (WE DIDN'T HAVE ANY GREEN CLOTHES OR JETS CLOTHES). Prepared his feeding pump and packed up two enormous bags of supplies for the day. John figured out our driving directions and filled a cooler with drinks.
John, Thomas, Daniel and I left our house in Sandy Hook, CT at 7:00AM. We drove on this beautiful sunny Fall day out to Staten Island, NY to Wagner College to pick up Sarah, who we had not seen since August. I wanted to cry when I saw her come out of the lobby and walk across the bridge. Sarah is 18, almost 19, and studying Arts Administration. We are so proud of her.
Once we had picked up Sarah, we were all together as a family, and my heart felt so happy. I separated my brain from all of the worries that were eating away at me, and chose to have a special time with my children. Readers, you have to understand, life with a severely medically fragile child pretty much prevents us from doing things together. It is very RARE that the 5 of us get to go and do something FUN, together. Very RARE indeed. While John works very hard to provide for the family, I work very hard managing a complicated child and a complicated mess of financial pressure. I try to work when I can, but its never enough. Caring for a disabled child puts pressures on a family that far exceed the number of words I can paint on this canvas. So lets focus back on the sunny day of our NY Jets adventure....
We arrived at MetLife Stadium, and immediately the excellent customer service started. The parking lot guy made sure we went right to the best Handicap spot available. We have an over sized Ford E250 Conversion van and it is difficult to park sometimes. I need to have the van close in case Daniel has seizure, illness, etc and we need to get him out. I laid Daniel out in the van, and changed his diaper, and made sure he was all set to go in. John said we looked like dogs in a sea of cats. We did not have any green on!!! Being from Sandy Hook, you think we would have. But we definitely didn't have any Jets clothing. I wish we did, everyone looked like they were having so much fun. People actually tailgate, cook meals, have fun, in the parking lot. That really happens!!! I've only seen it on TV.
When we proceeded to enter the stadium area, a very nice man in a suit, I wish I got his name, came up and led us personally through the gate and help get our things properly checked. Everyone was so friendly, and so helpful. The sun was very bright and it was 80 degrees with a simply perfect clear blue sky. What a blessing to be having fun on such a gorgeous day. John and Thomas played the "toss the football" game outside of the stadium and of course John my "Mr. Athletic" got the Ball through the hoop and won a prize. Thomas and John got to take a selfie, but I'm not sure where that picture went.
About that time I received a text message from my friend, Marc Pintel, who had made ALL of this possible for us, that he was arriving at the stadium. We went in and upstairs to the Lexus Clubhouse area. That place was awesome!! To be able to sit inside and see the stadium outside, so cool. They had TV screens everywhere. Honestly, we felt very humbled to be there, it was way more luxurious than I thought it would be. We found where our seats were and we all just stood there mesmerized by the stadium. We had never experienced a stadium before like that. I took Daniel and the kids and went to look for Marc, I found him eating his lunch wearing his "Daniel's #1 Fan" outfit. He looked great!! I couldn't quite put my finger on it, but something about him looked different. Later I found out he had lost 37 pounds and looked terrific. I was too mesmerized by the sweat suit Ursula from Party Planners had made for him to wear. So sweet.
The kids got to play some games and win prizes in the Lexus clubhouse. Daniel even got his picture taken with a couple of pretty cheerleaders. They got pins, headbands, gifts from spinning the wheel, etc. That was fun.
The game started at 1 and we were all very excited. Actress and singer Jesse James Decker sang the national anthem, and it gave me chills. The Jets were playing the Detroit Lions. Thomas and Sarah were watching the game intently, as was John. Daniel was looking all around, way up high mostly. But he wasn't his normal giddy happy self. He had a stomach ache, and twice that day I had to bring him to the family restroom where I could lock the door, put him on the floor and clean and change him. That was very difficult, and probably the only time during the day that I actually cried. Some things are just never easy no matter where I go. Changing a terrible poop diaper on a 16 year old is one of the difficulties that most people don't realize special needs moms go through. Sigh. It was rough, and I made the entire area smell so bad that a cleaning person came right in after us each time we went in. Made me feel like a jerk, but what else am I supposed to do? Oh well.
The seats we had were in the shade, so we had no worries about sun. We had $6.00 cokes and $5.00 waters, and after buying lunch I had no money left to buy the kids a souvenir t shirt... but they understood completely. Three cheeseburgers and fries, $75.00. John had wanted to put together a tailgate picnic, I should have listened to him!!! But it was something we would never get to do again.
The Jets lost the game, sadly, 17 to 24. But it was a great experience. Why was it great for Daniel? Not because he is able to understand the game, but because the sensory feeling of the roar of the crowd, the music, the lights, and even some fireworks when a touch down was scored really entranced him. I never quite know how Daniel is going to react to things, but he seemed very happy.
This Hasselberger family has been through hell and back repeatedly for 16 years. We have daily challenges that push me to the brink of sanity. I don't sleep nights, and Daniel's medical care is astronomical. John and I love each other very much, but the stress can eat away at even the best of relationships. We are coming up on our 22nd wedding anniversary October 3rd!! But where I am going here is, we seldom do anything as luxurious as a Football game at MetLife Stadium. The kids were so excited, as if we were going to a theme park! Just being together, makes us happy. Having Daniel in our life has taught us that family is so important. When we get together, and there isn't financial stress, or medical stress, or anxiety stress, or stress stress.... we get a chance to let our guards down a little bit, and laugh. That is the true gift. So we had a beautiful gift of watching a football game at Metlife Stadium. It was a day where everyone was in good health, and a trip that seemed overwhelming, really wasn't. Marc Pintel left the game a little bit early, so we took some group pictures and said our goodbyes. We left the Stadium about 4:00pm. Sarah was returned safely to her campus by 5:00pm and we hugged and kissed good bye. Then we drove back home from New York City to Sandy Hook,CT, picked up Henry the dog from Grandma and Poppa and went back to our life.
Our NY Jets adventure was a success. It is all because of Marc Pintel, and his wish to give the family a day of FUN.
Thank you to Marc Pintel, the Pintel family, the NY Jets, Ursula of Party Planners, and everyone who made this day a reality for us. There is no measure to the amount of gratitude we have for just a little relief and fun for a day.
Much love,
The Hasselberger Family: John, Julie, Sarah, Daniel, and Thomas
Tuesday, September 23, 2014
Sunday, September 21, 2014
It's late and I'm tired but I'm here typing away
It's late and I'm tired. My right hand, wrist, elbow all hurt from too much texting and typing I guess. I've found social media and internet groups to be such a place of connection and comfort. As you can see from the many video posts I have put up lately, I am on You Tube and trying to build a channel, mostly for Daniel's benefit, but really I am not sure where I want it to go. Sometimes you have to throw an idea to the wind and when it comes back at you its completely different. I never thought, for example, that I would have people privately emailing me for emotional support with all types of problems. I never realized how many people are hurting and suffering with fibromyalgia like I am. I never dreamed in a million years that I would ever get 10 subscribers, and we now have 89.
I am just Julie, the somewhat odd and eccentric Mom of three children. Living in Sandy Hook CT is a struggle financially, and someday I pray that we will have the ability to move Daniel south and OUT of this expensive place with harsh winters. 20 years ago I would have told you my future will look like "me as an executive and owning a ski house in Vermont." That ship has sailed to another port.
My young man who can't speak. My young man who is so quiet and so simple, but yet always leaving me wondering HOW much does he actually understand. Its so very hard. But when he holds my hand with his soft hand, I just know he is there with me. Whatever that means.
Please know that for any Mom to have a child with special needs is so very difficult, but that doesn't mean that the Mom is a super hero, she still needs hugs and friends.
It's late and I'm tired. Positioned ergonomically horrible in my bed with my laptop on my lap....doing what I tend to do every night.... read and watch until I fall asleep from exhaustion, with Daniel's video monitor right beside my bed.
Be at peace. Thank you for following us.... Please feel free to leave me any comments and questions here, on You Tube, on Facebook, where ever..
Until next time.Signing off...
Wednesday, September 17, 2014
Monday, September 15, 2014
Sunday, September 14, 2014
When your kid has talent
Dear blogger fans...
Life keeps us moving for sure. I've been thinking alot about my youngest son Thomas. He is currently 13 years old and in the 8th grade. Pushing himself through sickness he made it through 2 marching band performances yesterday. As he was playing his marching band music on our piano this morning... my mind focused on him. He's an incredible kid.
Thomas Hasselberger. in first grade he learned the piano and took a couple of years of lessons. He was in a couple of musicals (influenced by his sister of course) but when he got to fifth grade and put his hands on a saxophone, he became a different kid. First of all, we discovered he has perfect pitch. He switched to the baritone sax and started taking private lessons with Beth Doble at the middle school. She told me that he was really pretty amazing, and he quickly advanced past his grade level. In 6th grade he auditioned and made it into Western regionals, and was in jazz band in 5th and 6th. In 7th grade he moved up to the middle school jazz band, and also auditioned and got into Western regionals, missing the baritone sax spot in the jazz band by a couple of points. In the summer between 6 and 7 he decided to pick up a trombone. At the Danbury music center he quickly accomplished the trombone and played both trombone and bari sax. During 7th grade he played the trombone and the bari sax in band. In the summer between 7 and 8 he decided to pick up a bass clarinet. And we traded our trombone for a bass clarinet, which he is now playing. He also learned how to play the FLUTE!!! And surprised me by playing flute in the preparatory summer band of the Danbury music center. Thomas has a natural inclination for music. He knew this right away, but stuck it out in football. But now his main interest is music. He joined the marching band this year, as an 8th grader, and I assume he's doing quite well based on the feedback I'm getting. "Oh my gosh he got a 12 in the memorization test" etc etc.
I look at him, this tall big guy, who is smart, and charismatic and I wonder if there is MORE I should be doing to help him expand his joy of music. When Sarah was this age she discovered theatre, and voice lessons, and then RCA... it helped her grow and learn so much more beyond and with the Newtown program. Should I send Thomas to a different school? We now have the following instruments in our music room (previously known as the living room) Piano, keyboard, Baritone Sax, Tenor sax, bass clarinet, clarinet, flute, acoustic guitar, viola and violin (the last three being Sarah's, lol)
When you have a child, DANIEL, who will never speak, sing, play, dance, it truly brings value to every skill and talent that a person displays. When they find something that is within them.... its like a new person emerges. There was a time in my youth, when I was so engrossed in music (flute and piccolo), AllState first chair, marching band, and also in choir, but the flute was my thing. And I have not played in years. Its probably time. But my flute was stolen years ago, and my student flute is old. But this is not about me. I just am exploring how to further empower this boy who is 13 going on 16.
Thursday, September 11, 2014
Sunday, September 7, 2014
Monday, September 1, 2014
Friday, August 29, 2014
Wednesday, August 27, 2014
Monday, August 25, 2014
Giant Ball of Rubber Bands
This is how I sometimes see myself. A big giant ball of rubber bands all wrapped up tightly squeezing and squeezing. Then someone pulls one way, and the other. And I am just yanked back and forth, as I fulfill everyone elses needs. I feel very loved by my children, but in a lonely relationship with no communication, so if you watched my videos, although I don't discuss it, it is heart breaking.
But Sarah has a way of just CRACKING ME UP when I need it the most. We really do have some fun sometimes. Even if its only Target.
Thank you for coming to Daniel's blog!
Tuesday, August 19, 2014
Monday, August 18, 2014
Thursday, August 14, 2014
EEG and when a test goes backward
It is August 14, 2014 and Daniel has been in patient at Yale New Haven Children's hospital since Tuesday morning, August 12. He has a head wrapped up in gauze to protect the bunch of electrodes glued firmly to his head. He is here because we wanted to record his neurological state when he experiences what I call one of his "hypertonic" episodes. And in true form, he has been completely relaxed and calm during the entire study.
I never thought as a Mom that I would sit and silently wish for my child to have a melt down and go wacky. But if he did, we would have been out of here. I get too curious here, about what is going on with the baby down the hall being rushed into the PICU. The hospital is a weird place. A blend of routine, mixed with emergency, mixed with exhausted parents and bored administrators. When I went downstairs to get a sandwich yesterday, I was standing next to some "important" looking doctor types discussing grants and blah blah blah and thought how ironic that it all seemed so "corporate" in their words. I was anxiously waiting for my sandwich because I had no breakfast, or dinner the night before. I should have packed food. It gets too expensive. With my infected sinus pain, and exhausted brain, I stood next to these two well dressed, good smelling, seemingly very intelligent looking men. Talking in a language I practically didn't understand.
Daniel is here because he has a brain deformity that I don't understand. That no one can explain it fully to me. When he goes into these freak out episodes, I am the one who bears the blast of the stress of it. And he has to experience it. But here, in this controlled environment, he just lays there watching TV and looking at the ceiling with a glazed sleepy look on his face.
I am so tired, and wishing I could just ask my child what is wrong. Instead, this sophisticated test of his brain, created by grants probably from some big important doctor people like those guys in the sandwich line, isn't doing what it should. Or, he isn't doing what they expect him to do. But kids like Daniel don't perform on cue. They are a mystery. It's part of the journey, the unraveling of mysteries. Or the continuation of the wonderment that is a deformed brain.
Julie Hasselberger
Aug 14, 2014
I never thought as a Mom that I would sit and silently wish for my child to have a melt down and go wacky. But if he did, we would have been out of here. I get too curious here, about what is going on with the baby down the hall being rushed into the PICU. The hospital is a weird place. A blend of routine, mixed with emergency, mixed with exhausted parents and bored administrators. When I went downstairs to get a sandwich yesterday, I was standing next to some "important" looking doctor types discussing grants and blah blah blah and thought how ironic that it all seemed so "corporate" in their words. I was anxiously waiting for my sandwich because I had no breakfast, or dinner the night before. I should have packed food. It gets too expensive. With my infected sinus pain, and exhausted brain, I stood next to these two well dressed, good smelling, seemingly very intelligent looking men. Talking in a language I practically didn't understand.
Daniel is here because he has a brain deformity that I don't understand. That no one can explain it fully to me. When he goes into these freak out episodes, I am the one who bears the blast of the stress of it. And he has to experience it. But here, in this controlled environment, he just lays there watching TV and looking at the ceiling with a glazed sleepy look on his face.
I am so tired, and wishing I could just ask my child what is wrong. Instead, this sophisticated test of his brain, created by grants probably from some big important doctor people like those guys in the sandwich line, isn't doing what it should. Or, he isn't doing what they expect him to do. But kids like Daniel don't perform on cue. They are a mystery. It's part of the journey, the unraveling of mysteries. Or the continuation of the wonderment that is a deformed brain.
Julie Hasselberger
Aug 14, 2014
Wednesday, August 13, 2014
Sunday, August 10, 2014
Nose Doctor!!
Sorry my blog entries have all been video blog entries, I will be making attempts to write again. Have a wonderful day!
Saturday, August 9, 2014
Tag Sale
Oh I don't think I love tag sales anymore but it turned out to be ok. Ya do what you have to do, you know? It's a crazy ride this thing called life. I still have furniture that needs to go, and we never found the person who bought the bin of barbies.
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Friday, August 1, 2014
Monday, July 28, 2014
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