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

I am Julie Hasselberger.

They asked me for a "bio" and this is what I wrote.  Today is Thursday, May 21, 2015  

I am Julie Hasselberger. Mom of three children living in Sandy Hook, CT. I have a Bachelors degree in political science and an MBA with a concentration in Human Resource Management. In 2003 I left the full time corporate career world because my severely disabled child needed my attention, advocacy and care full time. I am outgoing, I love people, love music, and love God. I am a Christian and I believe that we have Hope through our saviour. Needless to say, my life is a daily struggle full of challenges that can be very overwhelming. I am always trying to get healthier, and that too is a tough battle as Daniel is just getting bigger. I love my children, Sarah, Daniel, and Thomas more than anything in this world. I have been married for 22 years to John Hasselberger, and marriage has its challenges dealing with differences in opinion and different personality issues. I've dealt with severe depression and anxiety for years, and I a true believer in "choosing happiness" NO MATTER HOW HARD.

I started vlogging regularly about a year ago to share my journey and my story. Its been a wonderful experience. My vlog is my main source of enjoyment these days, because I am capturing the daily life of my crazy family.

Life as a Mom to a severely disabled child is very isolating and lonely. You feel disconnected and on another planet all together. I cry ALOT but I laugh more.

I love to make friends... and its funny how I basically spend actual time with, none. But I have found so many friends who want to be there for me in the You Tube community and through my Special Needs support groups.

In life you never know what to expect. What matters most is love. It can be challenging when people who are closest to you dont "get you".... and the bills certainly have NO MERCY for people caring for disabled children in their own homes, giving up their lives for their children. Welcome to America.

Life is beautiful. Despite all of the negative people around us, the negative world we live in, we can choose to grab each moment and value it and love it. Live for now. Because the reality is truly this, all we have is what is now. The rest either is in the past, or in the future. One is gone, and the other is unknown. Love eachother now. Right now.

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.