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.
Thursday, December 28, 2017
Wednesday, December 27, 2017
Monday, December 25, 2017
Sunday, December 24, 2017
Saturday, December 23, 2017
Friday, December 22, 2017
Thursday, December 21, 2017
Wednesday, December 20, 2017
Tuesday, December 19, 2017
Sunday, December 17, 2017
Thursday, December 14, 2017
Tuesday, December 12, 2017
Sunday, December 10, 2017
Saturday, December 9, 2017
Thursday, December 7, 2017
Wednesday, December 6, 2017
Tuesday, December 5, 2017
Saturday, December 2, 2017
Thursday, November 30, 2017
Tuesday, November 28, 2017
Saturday, November 25, 2017
Friday, November 24, 2017
Wednesday, November 22, 2017
Monday, November 20, 2017
Wednesday, November 15, 2017
Tuesday, November 14, 2017
Wednesday, November 8, 2017
Tuesday, November 7, 2017
Sunday, November 5, 2017
Saturday, November 4, 2017
Friday, November 3, 2017
Wednesday, November 1, 2017
Friday, October 27, 2017
Thursday, October 26, 2017
Wednesday, October 25, 2017
Monday, October 23, 2017
Friday, October 20, 2017
Wednesday, October 18, 2017
Tuesday, October 17, 2017
Wednesday, October 11, 2017
Tuesday, October 10, 2017
Monday, October 9, 2017
Saturday, October 7, 2017
Friday, October 6, 2017
POST WEDDING SICKNESS
It doesn't take much to trigger Daniel into illness. Although we had such a beautiful day at my niece's wedding the day before, Daniel was exhausted and fatigued. He had a fever and could't exert much energy without suddenly falling asleep again.
All day, on this Sunday, I kept going....working and working, cleaning, doing laundry, checking vital signs, changing diapers, documenting... and doing everything else that needs to be done.
I was exhausted too.
Special needs Mother's always have to be one step ahead..... its hard when you are tired. There is no break.
Thanks for your support, if you actually watch these video's, and subscribe to our youtube channel, thank you.
Love Julie
Thursday, September 28, 2017
Wednesday, September 27, 2017
Tuesday, September 26, 2017
Monday, September 25, 2017
Friday, September 22, 2017
Thursday, September 21, 2017
Wednesday, September 20, 2017
Medically Fragile and Non Verbal
Sometimes its a complete mystery. Thank you for following my blog, and our videos... My goal is to share awareness and tell my story, about my life as a Special Needs Mother. So here it is.
Spread Love Friends. We have to take care of eachother...
Monday, September 18, 2017
Friday, September 15, 2017
Thursday, September 14, 2017
Tuesday, September 12, 2017
Sunday, September 10, 2017
Saturday, September 9, 2017
Thursday, September 7, 2017
Wednesday, September 6, 2017
JUST BREATHE
Anxiety from not being able to handle everything financially and all of the pressures from every direction...and worry about Daniel's health, hits me like a hurricane sometimes, and I have to work extremely hard to get through it. Sometimes, I can breathe through it, and meditate... Its just SO much to manage mentally, all the time, every minute.... But I am trying. And I always pray for miracles, and help.
Monday, September 4, 2017
POSTCARD FROM ANOTHER YOUTUBE FAMILY
The amazing people we make on our youtube journey are just one of the many suprising treasures of vlogging.
IN THE MIDST OF CHAOS FIND PEACE
Chaos surrounds us. And by practicing mindfulness, we can block out the pressure of it all... even if for brief moments. Learning to love and have joy, no matter what, despite all the limits and restrictions and frustrations... is my biggest conquest in life. Should it have to be so difficult, when life has already given my son a deformed brain... well.... that's just how it is.
And this will be my legacy to him.
FIRST DAY OF SCHOOL AND PRESENTS FOR DANIEL!!!
September 4, 2017
Its Labor Day today. I'm just reflecting on the many things I have to do... and want to do...and wish I could do. As a Mom of a disabled son, my life centers around Daniel. There are so many things that I manage. In addition to Daniel. And sometimes, I totally get lost emotionally, and I feel very alone.
People don't tend to ever understand me fully. But my life is spent, loving, caring, creating... and also planning, trying, searching, praying... resources are never enough. There is always a crisis, or a trauma happening. Trying to modify the mortgage, keep the cars running, put food in the fridge, pay for the doctor visits, manage the home such as... electric, oil, septic, appliances, cleaning the fireplaces, inspecting for any damage, taxes, yard work, gardening, ..... and the special needs van??? It is so expensive to maintain.
Because of Daniel's 100% 24 hour care needs, I can't work a full time job. My phone is always ringing with someone trying to tell me a bill is late and I owe them money. I don't sleep well. I live in pain. I try to make money when I have a few minutes to focus. And people say "do things for yourself" Which is, quite honestly, a very sad statement, because when I have time for myself, I am scrambling to figure out how to find a few extra dollars to keep the internet on. etc.
I believe in love. I want to stress that my family means the world to me. Yes, if we had an extra $20,000 a year, things would improve. But we spiral backwards. John works full time, and he feels its not enough. But I do EVERYTHING... for the home side of things, except for cutting the grass, and splitting wood.
So when you see a special needs Mom, like me, realize, there is so much more to what you are looking at. The goal is to care for our beloved son, in our home.... but the resources to do that incredible.
Sunday, September 3, 2017
I DO NOT GIVE UP
Dear Friends, Although I seldom write as much as I used to. Please know that every day is full of so many care giving details that its hard summarize what life is like. If I ever look back on all of this... I will know that my energy was never wasted.
After all, its about love. Every minute of it all.
After all, its about love. Every minute of it all.
Saturday, September 2, 2017
Friday, September 1, 2017
Thursday, August 31, 2017
Wednesday, August 30, 2017
Tuesday, August 29, 2017
Monday, August 28, 2017
Saturday, August 26, 2017
Friday, August 25, 2017
Wednesday, August 23, 2017
Sunday, August 20, 2017
Saturday, August 19, 2017
Thursday, August 17, 2017
Wednesday, August 16, 2017
Monday, August 14, 2017
Sunday, August 13, 2017
Wednesday, August 9, 2017
Monday, August 7, 2017
Friday, August 4, 2017
Wednesday, August 2, 2017
Monday, July 31, 2017
Thursday, July 27, 2017
Wednesday, July 26, 2017
Tuesday, July 25, 2017
Thursday, July 20, 2017
Wednesday, July 19, 2017
Tuesday, July 18, 2017
Sunday, July 16, 2017
Friday, July 14, 2017
Thursday, July 13, 2017
Wednesday, July 12, 2017
Sunday, July 9, 2017
Friday, July 7, 2017
Wednesday, July 5, 2017
Tuesday, July 4, 2017
Monday, July 3, 2017
Sunday, July 2, 2017
Saturday, July 1, 2017
Thursday, June 29, 2017
Tuesday, June 27, 2017
Sunday, June 25, 2017
Saturday, June 24, 2017
Friday, June 23, 2017
Tuesday, June 20, 2017
Friday, June 16, 2017
Thursday, June 15, 2017
Tuesday, June 13, 2017
Monday, June 12, 2017
Sunday, June 11, 2017
Thursday, June 8, 2017
Tuesday, June 6, 2017
Monday, June 5, 2017
Saturday, June 3, 2017
Friday, June 2, 2017
Thursday, June 1, 2017
Monday, May 29, 2017
Sunday, May 28, 2017
Friday, May 26, 2017
Tuesday, May 23, 2017
Monday, May 22, 2017
Sunday, May 21, 2017
Wednesday, May 17, 2017
Tuesday, May 16, 2017
Sunday, May 14, 2017
Saturday, May 13, 2017
Friday, May 12, 2017
Thursday, May 11, 2017
Sunday, May 7, 2017
Friday, May 5, 2017
Thursday, May 4, 2017
Monday, May 1, 2017
Saturday, April 29, 2017
Friday, April 28, 2017
Thursday, April 27, 2017
Wednesday, April 26, 2017
Monday, April 24, 2017
Sunday, April 23, 2017
Friday, April 21, 2017
DRIVING MOM FOR FIRST TIME
My fibromyalgia is really bad. The pain has been pretty unbearable. I wish I could get a vacation..
Wednesday, April 19, 2017
Tuesday, April 18, 2017
Sunday, April 16, 2017
Thursday, April 13, 2017
Tuesday, April 11, 2017
Monday, April 10, 2017
Sunday, April 9, 2017
Friday, April 7, 2017
Wednesday, April 5, 2017
Tuesday, April 4, 2017
Monday, April 3, 2017
Saturday, April 1, 2017
Tuesday, March 28, 2017
Monday, March 27, 2017
Saturday, March 25, 2017
Thursday, March 23, 2017
Wednesday, March 22, 2017
Tuesday, March 21, 2017
Monday, March 20, 2017
Thursday, March 16, 2017
Tuesday, March 14, 2017
Sunday, March 12, 2017
Saturday, March 11, 2017
Friday, March 10, 2017
Thursday, March 9, 2017
Wednesday, March 8, 2017
Tuesday, March 7, 2017
Monday, March 6, 2017
Sunday, March 5, 2017
Tuesday, February 28, 2017
Friday, February 24, 2017
Tuesday, February 21, 2017
Tuesday, February 14, 2017
Monday, February 13, 2017
Why I am a liberal and democrats send me mail
Wow. Suddenly... in my mail... NON STOP mail, articles, and information from the DNC and other democratic organizations. I don't even mind at all. Of all the bad that has happened, in my opinion, the one pretty interesting thing is the amount of democrats working hard to be much more a part of the process, more astute, more supportive, and it feels like people really care. I think it started with the letter I wrote during the campaign, about my son, and the disabled, wrote a letter to both parties. Only one ever returned the letter. And yes I am a registered democrat, but I have not always voted on the party line. Although my life has shown me that I am a far more liberal thinker. Because I was tossed head first from "conservative" into "what the effffff am I gonna do" and then I was basically sexually harassed at my job, and then fired because my son had disabilities that were just driving claims up way too high for my employer. And when you have to figure out alternative ways of living... just like when people with disabilities have to develop new ways of living life... all the "old rules in the box" just don't tend to apply any more.
I am a dreamer. I am altruistic to a fault. I believe that love matters and is the most powerful force in the universe. I believe that our planet is not ours to destroy. I believe that truth and justice, ethics and morality do matter. I believe that people should have a right to love who they want to love. I believe that disabled children deserve an education just like all typical children. I don't know the solution to the extensive and complex cost of health care, and I don't think its something that is going to be simple to solve... but supporting a child like my son, or worse, costs millions over a lifetime. If they take away medicaid and medicare people like my son, will suffer or even die.
I don't believe in walls. The billions they are spending to build a physical wall, should be spent on programs and job creation, and I don't think a physical wall is going to accomplish anything more that more division and more hate. Do immigrants need to come legally, yes..I believe so...but by the time our money pays for this wall, someone else will probably come along and stop funding it. I cherish the globalization of our nations, and the incredible diversity that we are so blessed to have. My first love of my life was a black guy... as we said it back in 1980, and I was punished, made fun of, and forbidden to see him. Then... I just did not understand... he was such a great guy, we got along so well... and that was all that mattered. Even teachers gave me a hard time. We were told not to see each other. We did anyways, of course, because I was always rebellious, to some degree. But I was also bullied after that and for years... I hate to see our world sliding backwards. And that's how it feels.
I pray every day that peace will prevail, and that somehow, someway the negative fear mongering, nuclear thoughts that are filling every one's minds... will be replaced with progress towards peace, not hate. More jobs won't equate to... alienating the world, and eliminating the EPA. Our children should be able to travel and study the world... work globally...without threat. That is what I pray for.
I believe that Jesus Christ is my savior. That it is up to me to have a personal relationship with Him. That it is NOT about what deeds you do, but about how He lives in you. And with you. Because if you have a true spiritual connection with Christ, He will guide you. I don't believe that the way to God is through deeds, I believe that God in our hearts will use us as his vehicle... We all have unique gifts and talents... To hardcore conservatives, who preach right and wrong because they study and interpret the bible one way, those folks probably think I am wrong. But I am just sharing my own personal experience with my Savior. I personally accepted him into my heart and my life. And that relationship is my own spiritual experience. I was baptized by immersion at Walnut Hill Community Church and my life was personally changed forever.
So... the fact that someone is actually interested in my opinion, and my experience, as an MBA Graduate corporate career woman.... tossed out from "that" world, because of a little boy who needed me... and still struggling to survive... would matter. I had a dream once, it was to keep rising the corporate ladder, make lots of money, invest lots of money, educate my kids, give them security, and retire with my husband in a place where I can sit on a beach. THAT plan is gone. Forever. But somehow... we just a bit more compassionate, a bit more aware of pain, of suffering, of life without a voice, life without eating food, life without ever walking... life... with cancer, more children funerals than adults. Not having enough cash to get groceries sometimes, but creatively keeping heads up. Walking through my rich town, knowing that I have a fundraiser, and not feeling ashamed.
Did I go crazy somewhere along the way? The disabled, the struggling, the people in pain, people dying, watching loved ones die, depressed, sick lonely.... poor. Everyone has a story. Everyone matters. Whether they are gay or straight, black or white, Christian or Muslim or Jewish or Atheist.... we are all humanity. Somewhere... along the way, the corporate world said "fuck you" to me. And I couldn't fight back, because I was too busy being a special needs Mom. And I feared for my family, because I worked SO HARD to get to that income level... and then it was gone. But... we are fighters. Liberal thinkers, try new things, embrace technology, kind of thinkers. That's not so bad. And the journey.... it continues.
Embrace who you are. (all this from mail from the democrats.. lol)
Julie Hasselberger
February 13, 2017
Thursday, February 9, 2017
Friday, February 3, 2017
Wednesday, February 1, 2017
Tuesday, January 31, 2017
Thursday, January 26, 2017
Wednesday, January 25, 2017
Monday, January 23, 2017
Friday, January 20, 2017
Wednesday, January 18, 2017
Tuesday, January 17, 2017
Sunday, January 15, 2017
Wednesday, January 11, 2017
Sunday, January 8, 2017
Thursday, January 5, 2017
Wednesday, January 4, 2017
Monday, January 2, 2017
New Year 2017... thoughts
January 2, 2017
Here I sit looking at a new year. I'm 50. My kids are 21, 19, and 15 (almost 16). Daniel will be in public school until 21. Just thinking about him mostly. And what things I can do to help him. But I also have to make considerable progress, on me. ME. Can you believe I am saying that. My Mom had a heart attack on Christmas this year. We all need to realize that our health choices have consequences (when we are in control of them of course). I suffer from Post Traumatic stress, and intense anxiety and depression. And of course, Fibromyalgia.
I worry almost constantly about money. About paying bills. About my children's future. About Daniel. Life is really hard, as a caregiver. You are responsible for the lives of others, making it really hard to care about yourself. Which is really weird for me, considering I am self admittedly a once very very self centered ego focused person. Middle child syndrome? Maybe. I enjoyed being fashion forward and into looks. And health. And then I had a child with massive disabilities and felt selfish caring one iota about my own needs. Because his life depends on me. Plus, I got really sick. deal with massive pain every day.
New Year. Well. More time to spend on meditating. On encouraging others. On writing. On learning how to be healthier WHILE having fibromyalgia, because it doesn't ever go away. More time for romance with my husband. Yes. Massive issues with money, stress, medical care, all exist and are growing. But we have to train our brains to deal with those things, BUT not put them in front of the things that make us happier and healthier. Ironically, the happier and healthier we are, the better we do with managing our financial lives. The inherent problem with caring for a severely disabled and medically fragile person, is this... at any given second... WHAM... another $10,000 expense hits. and a hospital trip. And seizures come back. Or spasticity goes out of control.
Statistically, caring for a disabled person in your home, will cost quadruple, if not more...the cost of raising a typical child through their college years. Probably more...because of home accessibility, transportation, and the time you have to give up that you could have been working.
The Love... is like an open bank that pours like a never ending river. But in our society, people like my son, are a cost. A bill. Something people turn away from and try to ignore if it doesn't affect them personally. But Daniel is a human being who deserves a good life. And a normal, hard working educated family like ours, is crippled from the expense. Imagine a single Mom who is 18 and has a disabled baby. I try to advocate and be a source of support as much as possible.
New Year? Yeah right. OK. My 2017 will be a continuation and growth of my YouTube channel "Julie Hasselberger" The journey of me. Of my life as a Mother who is 50. And has a severely disabled son with a rare brain deformity... love, life, and laughter. Always reaching out to encourage others to join our journey. More time for Yoga. Losing weight... yes... I really have to try. And most of all, even with not sleeping nights, and suffering from massive anxiety about finances, I have to continue to dig deep and find positive ways to keep my heart strong, and not sink into that deep dark depression that, because of my history, always lingers right there on the surface.
My life, in 2016, was NON stop caring. We had no break. No vacation. Saw no beach. Felt very little "relaxing". But we did see one daughter go off to Ireland to study for 4 months, and encouraged one son to continue his incredible passion and talent with music, via a jazz instructor who is amazing. Renovated a Mold infested bathroom... only to find out the cost was triple the estimate and landed us with another big loan on top of all of our other loans. And now, the bath is leaking again. More holes to repair. But that is just home ownership.
Daniel's big van... needs new tires, and we just can't afford the $1500 charge for annual maintenance on the lift. We would LOVE a new minivan with a manual style lift... but they are expensive. Of course. Our other car has 198,000 miles on it!!! We teeter. and we survive. And work hard. really hard. REALLY REALLY REALLY REALLY hard.
Because life is about family. And taking care of family. And giving of our hearts to those that matter most, in the moment. In the minute. While we are here.
And I suppose that is what 2017 will be more of. While we wait nervously to see if Daniel's benefits that have helped us so much, will be taken away.
We love. We care. We want to make a difference in this life time. And making a difference means being brave and stepping out of comfort zones, trying new things. Even with crippling health (mine) and exhaustion and financial stress that is completely unrelenting when you can only rely on one salary.
One day at a time. Making the most out of smiles and realizing that life is so freaking fragile. When we die, money will no longer matter. Ironically, lack of .... puts many people into their graves.
Daniel is a teacher. He has a message for this world. And I am his voice. Through the vlog, we share that voice. We have fun too.
Happy New Year. Please spread kindness. We are all here together.
Julie Hasselberger
January 2 2017
Here I sit looking at a new year. I'm 50. My kids are 21, 19, and 15 (almost 16). Daniel will be in public school until 21. Just thinking about him mostly. And what things I can do to help him. But I also have to make considerable progress, on me. ME. Can you believe I am saying that. My Mom had a heart attack on Christmas this year. We all need to realize that our health choices have consequences (when we are in control of them of course). I suffer from Post Traumatic stress, and intense anxiety and depression. And of course, Fibromyalgia.
I worry almost constantly about money. About paying bills. About my children's future. About Daniel. Life is really hard, as a caregiver. You are responsible for the lives of others, making it really hard to care about yourself. Which is really weird for me, considering I am self admittedly a once very very self centered ego focused person. Middle child syndrome? Maybe. I enjoyed being fashion forward and into looks. And health. And then I had a child with massive disabilities and felt selfish caring one iota about my own needs. Because his life depends on me. Plus, I got really sick. deal with massive pain every day.
New Year. Well. More time to spend on meditating. On encouraging others. On writing. On learning how to be healthier WHILE having fibromyalgia, because it doesn't ever go away. More time for romance with my husband. Yes. Massive issues with money, stress, medical care, all exist and are growing. But we have to train our brains to deal with those things, BUT not put them in front of the things that make us happier and healthier. Ironically, the happier and healthier we are, the better we do with managing our financial lives. The inherent problem with caring for a severely disabled and medically fragile person, is this... at any given second... WHAM... another $10,000 expense hits. and a hospital trip. And seizures come back. Or spasticity goes out of control.
Statistically, caring for a disabled person in your home, will cost quadruple, if not more...the cost of raising a typical child through their college years. Probably more...because of home accessibility, transportation, and the time you have to give up that you could have been working.
The Love... is like an open bank that pours like a never ending river. But in our society, people like my son, are a cost. A bill. Something people turn away from and try to ignore if it doesn't affect them personally. But Daniel is a human being who deserves a good life. And a normal, hard working educated family like ours, is crippled from the expense. Imagine a single Mom who is 18 and has a disabled baby. I try to advocate and be a source of support as much as possible.
New Year? Yeah right. OK. My 2017 will be a continuation and growth of my YouTube channel "Julie Hasselberger" The journey of me. Of my life as a Mother who is 50. And has a severely disabled son with a rare brain deformity... love, life, and laughter. Always reaching out to encourage others to join our journey. More time for Yoga. Losing weight... yes... I really have to try. And most of all, even with not sleeping nights, and suffering from massive anxiety about finances, I have to continue to dig deep and find positive ways to keep my heart strong, and not sink into that deep dark depression that, because of my history, always lingers right there on the surface.
My life, in 2016, was NON stop caring. We had no break. No vacation. Saw no beach. Felt very little "relaxing". But we did see one daughter go off to Ireland to study for 4 months, and encouraged one son to continue his incredible passion and talent with music, via a jazz instructor who is amazing. Renovated a Mold infested bathroom... only to find out the cost was triple the estimate and landed us with another big loan on top of all of our other loans. And now, the bath is leaking again. More holes to repair. But that is just home ownership.
Daniel's big van... needs new tires, and we just can't afford the $1500 charge for annual maintenance on the lift. We would LOVE a new minivan with a manual style lift... but they are expensive. Of course. Our other car has 198,000 miles on it!!! We teeter. and we survive. And work hard. really hard. REALLY REALLY REALLY REALLY hard.
Because life is about family. And taking care of family. And giving of our hearts to those that matter most, in the moment. In the minute. While we are here.
And I suppose that is what 2017 will be more of. While we wait nervously to see if Daniel's benefits that have helped us so much, will be taken away.
We love. We care. We want to make a difference in this life time. And making a difference means being brave and stepping out of comfort zones, trying new things. Even with crippling health (mine) and exhaustion and financial stress that is completely unrelenting when you can only rely on one salary.
One day at a time. Making the most out of smiles and realizing that life is so freaking fragile. When we die, money will no longer matter. Ironically, lack of .... puts many people into their graves.
Daniel is a teacher. He has a message for this world. And I am his voice. Through the vlog, we share that voice. We have fun too.
Happy New Year. Please spread kindness. We are all here together.
Julie Hasselberger
January 2 2017
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