HAIRCUTS AND IRISH GNOME SILLIES

Separate but parallel universe

May 30, 2019 

I have often described a feeling of being in a separate, but sort of occasionally parallel world.  Having a severely disabled child, while also raising two typical children placed me in a strange position of belonging to one world, in a false state of "being like every one else ness" that you feel at a kids soccer game, or watching a band performance.  When Daniel was not with me, I just melted into the crowd.  

When Daniel was with me, because I never wanted to leave him out of anything, and in the early years (prior to the blessings of medicaid expansion) I did not have any nursing help.  

While navigating my own personal trauma, depression, PTSD and stinky fibromyalgia, I was also keeping a brave face on.  Letting the world think I had it all together.  And boy do people think I am some sort of a super hero.  The compliments flood, because I honest think that people don't know what to say, except "you are an awesome mom", "you are so strong", "God only gives you what you can handle", and it goes on and on. 

But the reality is, when push comes to shove, people don't seem to want to be around me.  For 5 years, Thomas (in his spectacular musically talented way) was in the the Marching Band.  I was so excited to be a band mom.  To be involved, and on committees and do stuff.  Only the real news was, I couldn't commit to anything.  Never knowing if I had nursing care, or if Daniel was going to be well enough, left me in a lurch.  So I just took a seat on the side line, and watched everyone else be pit parents, sell merchandise, run bake sales, laugh and talk and make friends.   While I sat, most of the time with just Daniel and I, in our little wheelchair accessible bubble. 

A sprinkling of parents would certainly be friendly, no one is mean, but just like in the rest of the reality of life, people mostly look away from a caregiver and her son.  They are too focused on themselves and their children, and their jobs as involved and supportive parents. 

I never expect anything from anyone, I let it go a very long time ago.  And I no longer have even a single friend that I can comfortably call and say, hey... want to go for a coffee?   

I did have one friend, who had a son in band, he had mild special needs, but she was SO nice to me.  We kept talking about meeting up for coffee.  But then she had to move to Pennsylvania.  Now I regret that we never connected at Starbucks.

I don't want people to pity me, but I just gave up after awhile.  The isolation while in a crowd thing? Is a real thing.  Or maybe I just have incredibly bad dissociative disorder.  

I am 52 years old.  I have been reinventing myself, every day, since the day I found out that my child would need me 24 hours a day.   PMG is a rare condition.  There was no outline for what would happen, there still isn't.  Not that anyone has one really. 

It surely would have been nice, to have had some close friends over the 5 years that Thomas was in band.  I have that sprinkling of a few, who when I run into them, they are absolutely genuine and wonderful.  For the most part, for every thing, unless I had John by my side, I was floating in that parallel dissociative separation called Special Needs Mom. 

Carry on.. 

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'm still here. Critical thoughts. And most recent video link. Please read

Once upon a time, life was easier?  Probably not.  but let me tell you, as a Mother... I will never give up on my children.

We are currently raising money, because the state is reducing Daniel's benefits, and our home needs ALOT of mold removed, especially with a fragile child.    Daniel is 18 now.   Over the years, more and more people have simply slipped away.  Family???   We can't see them because travel is hard on us, and accomodations are complicated.   Holidays?  We can't plan them, because 99% of the time something happens which can alter plans.  Special Events?  We don't even get invited anymore, I think most people assume we are just aloof and disconnected.    Church?  We have a wonderful church group, but they don't even know us anymore, because getting Daniel to church is a challenge and I am trying so hard to get "better" too.  So I pray and watch sermons on my own.  Friends?  Youtube, Facebook, and a few local people connected to Thomas's events.  Thats basically the extent of people who reach out.    Most people we were friends with, when our kids were young, are gone.  BECAUSE our kids are growing up, Sarah is almost finishing college.  Thomas is in highschool.   Everything with him is music related, which is lovely.    But I spend all of my time with my husband and by myself.

And with Daniel, of course.   Nurses?  wonderful human beings who fill a void in my life and also care for my son.

Most people have children, and as they reach this point in life, the kids are grown, and retirement is in sight.  Vacations, hobbies, having "fun" together....    We will not have that.   It does not mean we don't love, and care, and laugh and share.    TO SEE DANIEL SWIM IN THE GULF OF MEXICO was the biggest blessing and joy of my heart last year.    Now that he is 18, more and more is being taken away.   We work harder, and get less, work even harder....  get EVEN less.

But he is 18 years old now....  and that in itself is a miracle.  He is a miracle, most people clearly don't have time to even think about him, or me, or us..  because OF COURSE we all have such busy lives.  Everyone has their own bubble.      So most "normal people" or people who have no financial limitations, or people who have normal healthy kids....  just don't know the kind of pressure bubble we live in.    And most families with special needs and medicall fragile kids live in.   Over the course of 18 years I have watched a community of love and support, programs and funds and fun groups and friends....  simply disappear, or tell me, sorry he is too old to apply.  

I have worked my brain into oblivion, trying to keep the house, work through bills, get things fixed, put kids into college, pay for things that would make most people go "HOLY SHIT THAT COSTS THAT MUCH??"  and answer, yes, because its for a special needs person.

And I try to be a mother, friend, daughter, supporter, cook, cleaner, and put income back into the house.    All the while, ALWAYS scared inside my conscious that my son will die.  Always afraid of the next phone call that will send me panicking.  Knowing that I have two choices, fight or die.  Its honestly that simple.  I have to fight.  Am I tired, yes, I am very very very tired.  Will I ever stop? No. Never, unless I die.  No one else is going to give my son help that he needs, I have to push and push and push.   And we are not talking millions here.  Just basic life necessities.

And after 18 years, when asking for help from people who can help  feels like crap, because people really don't want to help, and you have become a nuisance.  Or, they assume you are careless, uncivil, not acting like a responsible adult, or just screwing things up.  And you start to question and doubt yourself even more.    You are not their responsibility ultimately, after 18 years how could Julie and and John possibly not have everything all "together"? Your husband works really hard, but feels like a complete failure even having to think about asking for help.  (and your job is to build up his confidence too).      And failing someone else, making someone else feel bad, is just added to the guilt pile.  No matter how many times you say thank you,   And makes you FEAR asking for help, because you know you failed them by not showing enough gratitude in the right way, and at a right time...  and you feel SO BAD about it.  For months and months and months...because you really are GRATEFUL, and really do love them for helping.    And it gets complicated, and makes you feel so sad.  REALLY sad.     And honestly, truly, you really just needed help.     I hear this type of emotion from alot of financially needy families trying to care for a sick loved one.   When everything is exhausted, when you can't get a loan, when you have had so many tag sales that you live a minimalistic life, when your credit sucks no matter how you try, when the only entertainment you have is a drive to the dump and cup of coffee with your husband....      You just have to ....  what.... give up?  

Can't give up Julie and John.  Because the state just took away therapy.  The Attorney just sent you a big bill (the state was supposed to pay it) but now they are charging YOU for guardianship... no one told us that.  Giving up is never an option.   And we are not careless, immature, stupid people.  We are NOT perfect, but we are two humans who love eachother, love their kids, and love having happiness.    Anyhow...

 When the real truth is, you are simply trying to make it through each day keeping a child alive and smiling.  

The fact that we still have a house, and live in a lovely community, with wonderful schools, and can survive in the state of Connecticut....  for the sake of our typical kids, is wonderful.    Do we have savings? no.  Do we have retirement plans? absolutely none.  Do we see beyond next week, pretty close to impossible with this kind of pressure.   One little vest machine, $15,000.  Monthly medical out of pocket costs? varies from $500 to $5,000.  Lawyer bill to become our own child's guardian?? $800.  Repairs to a 2004 lift van that is literally starting to fall apart?  just to fix the lift? $2000   Mortgage, insurance, taxes, electric bill, phone bill, oil bill, home repairs, food, gas, car payment, medical expenses for Julie....    you know...  we have the normal stuff.    Should John's salary be enough to cover it? Yes.  it would.  But then, you have to LUMP all of the Daniel expenses and liabilities....  and we sink to the bottom of the ocean like a brick.  

So each month....  we just wiggle and jiggle and get through.

Sometimes, just sometimes, I wish someone would realize that I am not a perfect human, and I just want to have joy on this journey while we are actually on this journey.  Lonliness was never a part of the plan for me.  But sometimes, being alone is better, because it hurts to much to be with people who have zero compassion for the struggle that is "real".    Surround yourself with love, and if that love comes through the computer, then fine.  Thats cool.  One day, someone left a potted flower on my door step, that was better than anything I could have received that day.  Because it told me that someone, somewhere.... cared.  And that I wasn't actually as alone as I thought.

It is now May 5, 2016.  I am trying to raise 18,000 so that I can remove the mold from our house.  I just successfully completed a "bank modification" of our mortgage which took almost a YEAR! And just getting that completed was huge.   Our bankruptcy from 2009 has dropped from our record.  That is such a relief, we had such a struggle.

So one family, one hard working husband, one crazy dedicated Mom, and three amazing children.  Living in a bubble, that is always on the verge of popping.   Someday soon I could have a stroke, or get sicker, because staying healthy has been a ridiculous challenge.  But people say "do things for yourself"   Bah ha ha ha ha ha ha .  When?  When might that be?  The only thing I do for myself is my You Tube channel, and write.   The rest is for them, I love them. I just want to smile alittle more.  Is that so much to ask.   Making sure Sarah and Thomas have JOY in their lives, and education that will help them...  is so important.

Do you really have any idea how hard it is to raise and care for a child/now man who will never speak a word to you?   Who walks the line of medical fragility beyond which you have any control?  Who you love and adore, whose morning smiles can make all the pain disappear?

Do you really know how mentally and physically and emotionally exhausting it is for special needs parents?   Maybe you are one, and you are reading this and nodding.   Maybe you don't care.   Maybe you are too practical and don't understand me.   I don't know.   I just want the world to know a few things....

I AM GRATEFUL.  FOR ALL HELP.  FOR ALL LOVE.  FOR LIFE.  FOR THE SIMPLE THINGS.  SOMETIMES I MAY NOT SHOW IT, BUT ITS USUALLY BECAUSE LIFE CONSUMES MY THOUGHTS.    JOHN AND I ARE VERY VERY VERY VERY VERY GRATEFUL.  HE FEELS LIKE A FAILURE AND FEELS DEPRESSED, ALOT BECAUSE OF HIS PRIDE AND WANTING TO DO IT ALL.   I AM CONSTANTLY TRYING TO GET HIM TO OPEN HIS HEART AND TRY NOT TO BEAT HIMSELF UP.   WHEN WE DO ASK FOR HELP, HE OFTEN GOES INTO DEPRESSION.

I HAVE DEPRESSION, A VERY BAD SITUATION. BEEN GETTING HELP FOR YEARS.  ITS LED INTO COMPLEX PHYSICAL PROBLEMS BUT I DEAL WITH IT.  HAVE NOT SLEPT MORE THAN 3-4 HOURS A NIGHT IN WHAT, 10 YEARS?  WHO KNOWS.

I LOVE MY FAMILY MORE THAN BREATHING AIR.

I NEVER PLANNED ON HAVING A CHILD THAT WOULD BE SUCH A BURDEN TO SOCIETY, FAMILY, FINANCES, AND SCHOOL ETC.   HE IS YOUR BURDEN APPARENTLY, BUT TO ME, HE IS MY CHILD.     HOW DO YOU THINK I FEEL, INSIDE MY CONSCIOUS, THAT IF I HAD NOT CONTRACTED THIS STUPID CMV VIRUS, DANIEL WOULD HAVE BEEN BORN A NORMAL PERSON.   ULTIMATELY IT IS MY FAULT.  EVEN THOUGH I HAD NO CONTROL. THIS IS THE FIRST TIME I HAVE WRITTEN THIS DOWN.

I AM HERE.  STILL HERE.  IN MY HOUSE.  CRYING ALOT. LAUGHING ALOT. HURTING LIKE CRAZY FROM MY STUPID PHYICAL EXHAUSTION.  STILL DREAMING OF BEING ON A WARM BEACH AND FEELING SORRY MYSELF, BECAUSE SOMETIMES I DO.  I ADMIT.  I FEEL BAD FOR MYSELF THAT I CAN'T HAVE YOUR VACATIONS AND LUXURIES, EVEN FOR A COUPLE OF DAYS.  I AM STILL HERE, TRYING TO ROB PETER TO PAY PAUL TO FIGURE OUT HOW TO FIX MY HOUSE SO THAT IT STAYS A HEALTHY ENVIRONMENT.

I WAKE UP EACH DAY, GIVING MYSELF THE "BE HAPPY" MANTRA.  AND PICK UP MY CAMERA AND VLOG, BECAUSE IT HELPS ME FEEL LIKE I HAVE A PURPOSE.

I AM TURNING 50 IN JULY.  I AM A MOM.  A WIFE. A FRIEND. A HUMAN BEING.

And is just wanting to keep your sick child alive, such a bad thing?  Where has everyone gone?

Oh.  And my dog Henry.  He is my best friend.   And sincerely, thank you, to those who have helped and cared over the years.



Julie Hasselberger

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.

To Baclofen pump or not to Baclofen pump, that is the question

Yesterday Daniel saw Dr. Cruz-Zeno, who is a pediatric physiatrist.  He specializes in rehabilitation medicine, and he is one of the doctors on Daniel's team who has been seeing him for his entire life, since he was about 6 months old.

Daniel has been through so much, and his current amount of muscle spasticity is, and has been for awhile, a big concern.  He takes a medication called Baclofen, which helps to manage the spasticity, or tightness, of the muscles.  Unfortuneately Daniel still has periods of time when he goes into these complete and total spastic "fits" I guess I could say, for lack of a better word.

These are Yo Gi Bo Pillows.  We would love them for Daniel at home.

The Baclofen activates directly at the spinal chord level.  So the oral baclofen that he takes, takes a while to be ingested, and get to where it needs to get to.  There is another way.  It is call "Intrathecal Baclofen administration"  And essentially, they surgically place a pump into his body, which will administrer the medicine directly into the spine.  Its a more effective way of controlling the tone problems.

Daniel with his buddy and therapist Adam

Daniel's spinal surgeon has given me the name of a Neurosurgeon at Yale New Haven Children's Hospital.  So I will be calling for a consultation.  They can actually do a test run to see if this method is appropriate for Daniel..  Because of the amount and placement of Daniel's spinal fusion hardware in his back, it may be extremely difficult, if not impossible to place a baclofen pump into Daniels body.  But it's worth a shot to look into.

I have been procrastinating in my mind with this Baclofen issue for about 6 months.  But, as we were getting ready to leave the doctors office yesterday, Daniel went into the most extreme demonstration of high tone and spasticity that I have seen in a long time.  So the doctor got to witness it.  It took his nurse and I a long time to even get him back into his wheelchair.

This process is long and complicated...  this process called managing Daniel's medical care.  I'm exhausted right now, and have too many things to process.  Somehow I need to find a method for organizing myself in a better fashion towards goal attainment.  I don't have a literal second in my day, for myself.

This time I am spending, right now, on this blog is my one hour between when Daniel goes to school and I have to go to the next thing on my schedule.  I would really just LOVE to relax for a couple of hours and watch you tube, make videos, and manage my planner.  I need a better planner.

This is me and how I feel every day

So who knows what tomorrow will hold?  I don't even know what the next hour will hold.  All I really know right now my friends, is that I need another cup of coffee.  And an appointment with my psychotherapist before I mentally go wonky.

Peace and love until next time!!!   Please come to our You Tube channel, "Julie Hasselberger"

https://youtu.be/hunnIPWj1Eo

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.

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.

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.

 PLEASE ENJOY THIS VIDEO OF "MARCHING BANDS AND UNFRIENDLY GOLF CARTS

Vacation thoughts from home

Will I  remember the way it feels to step from dry coolness in a small condo, out into a warm, humid, sunny walk way lined with mini palm trees and other tropical plants? To walk across the driveway with the squeek of my flip flops and the smell of my sunscreen? Will I forget the way I always tried to see as many geckos as I could, those cute little lizard guys who live all about the complex just scittering and scattering about?  When you come home from vacation in South Western Florida to the "north we know".. its almost like someone plucks you from a dream and drops you harshly back into a cold pool, where there are no palms, no geckos, no amazing vegetation and spectacular sunsets.

Will I remember being able to say, "I'm going to the pool" and just go over to it?"  The white powder sand on the beach, and the 88 degree water that envelopes you in a salty floating paradise under a blue sky, will they fade away into merely photos?  Probably.

What I will never forget is the look on Daniel's face as he is mesmerized by the plane taking off, by the feel of the Florida heat, by the warmth of the ocean, by the lights in the ceilings, by the soft waves coming in and out leaving so many gorgeous white shells.  And Daniel's face as John carries him into the pool, wraps a pool noodle around him, and just floats around.  That look of joy, comfort, freedom, relaxation, and love.  Secure in Dad's arms he lets his body float, kick, and splash.  He bares a farmers tan from his rash guard shirt, and sports a few bug bites on his toes from rogue biting flies that get us all. That face so simple and gentle soaking in the world with his eyes and noticing intricate details of a typical day that to him are amazing. 

Seeing him happy is the reason why we do it.  If it were not for family who love us, we wouldn't be able to witness that joyful face in a place so different and so stimulating.   It is just pure happiness in the moment.  Daniel is pure happiness and truth in the moment too.  The rest of us are all wrapped up in our complications.  Daniel is just enjoying life as it comes and presents new things for him to experience. 

It's simple and completely spectacular. 

Coffee in my favorite Florida chair

In a white soft leather recliner, that swivels 360 degrees, I'm sitting with my feet up looking out a window at Florida.   Daniel is sleeping in a crazy but happy position in the bed I just got up from. When we travel one of the biggest challenges is where do you put a 16 year old disabled child to sleep.  Gone are the the days of bed rails and  pack and plays.  Usually he sleeps right up next to me.  Because he wants to cuddle up and be close.  Daddy is on a trundle bed at the other side of the room. It's like a camp.  The other kids get to have their own rooms and that's ok.  They are getting older now and need their privacy.

 It never ceases to put a numbing surreal feeling in my brain when I try to envision my future.  It includes the three of us, in this camp, or some other camp, so that I can take care of Daniel.  A far cry from the happy retirees I see down here in Florida enjoying their grandchildren, or just strolling hand in hand down the beach.   Our nest will always include the one baby bird who has no wings.

Florida has become, to me, a place of obsession.  I love the weather, the air, the water, the people.  Handicap spots are plentiful, and people are patient.  Beaches now offer beach wheelchairs, so Daniel can go take a walk down the beach, or just get right up to the warm water of the Gulf of Mexico.  The roads are lined with palm trees and the homes are very solid structures full of ceiling fans, tile, and Florida flare.  Sarah and I walked down to the beach with Daniel last night, I'd say it was about two blocks from this condo we are in.  He smiled and looked with fascination at everything he saw.  It is a far cry from Sandy Hook, CT where we can not walk safely on our own road.  

Coffee tastes better for some reason when I am rocking in this chair looking at some species of palm tree that has grown about 5 feet taller in the 6 or 7 years we have been bring Daniel here to John's cousin's condo.

I don't fear for his health and well being in this place, after all, its Naples Florida. There is a hospital near by, and a doctors office on every corner of some sort.

Sarah and I have been engrossed in episodes of HGTV all week and all I can say is that there isnt a show on that channel that I don't love.  I would just like to see an episode where they have to accommodate for a disabled child.

As my moment of peace is drawing to a close, I will add a few pictures to this post and simply end until later. Daniel has started making his "hey I'm awake in here" sounds, and he needs much care in the morning.  This white leather chair is my very favorite item in this entire condo.  Even if my moments in this place of peace are few, I will say that I thoroughly enjoy them.  Coffee just tastes better in this chair.

The "Julie" episodes

I've been a special needs Mom for 16 years and 6 months.  Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed.  My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.

But here's the "thing".  I am only human.  I also have two other "normal" children, Sarah and Thomas.  Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball....    And as they age and grow I proud just like other parents.   The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent.  My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness.  It happens quite randomly.  I can't control it.  It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent".  But I'm not.

On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students.  Thomas is ONLY going into 8th grade but he is allowed to participate.  He is so excited, of course, being the blossoming talented musician that he is.  And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid.  John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.  

And then, it happened.  The "thing".  Tears welled up in my eyes and my heart started to pound.  I can't stop the tears, so I have to let them pour.  I try to hide and slouch down, but my husband keeps whispering "whats wrong?  are you OK?"   I wave him away and say "just give me a second".  Because I am thinking of Daniel.  Daniel who will never march in a band, sing a song, play a cello, or write a story.  Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady.  Graduate, and go off to college where she is now thriving.   Daniel WOULD have been a senior next year.  He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.

I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing.  There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.

By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents.  These parents don't know about Daniel, most of them, so its nice to just be one of the crowd.  When I start showing up pushing the wheelchair, people treat me differently and the kids stare.  It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".

Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts.  I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form.  He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.

Yesterday was June 12, 2014.  One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system.  She is 21 and can no longer attend.  The school had a lovely ceremony and reception for her, her name is Emily.  It was a beautiful moment, profoundly happy and sad at the same time.  The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish.  9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly.  Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.

I must conclude with something that will change the depressing nature of this post.  The love in that graduation ceremony yesterday was something that you could feel in the air.  There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met.  It was a beautiful testimony to what these kids teach us, and show us.  It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds.  And her brave and dedicated family who have dealt with so many challenges.  

(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)

I have to have these episodes, its just in my nature.  It's just who I am.  And I never claim to be super woman who can endure this life with the strength of a giant.   I'm just Julie.  Failing and succeeding just like everyone else.  The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive.  That is a role I have gladly accepted, even with all of the sacrifices that it brings.  I am entitled to a good cry.  It cleanses out those feelings.

Grateful hearts, prayers, loving gestures and soup

Today, is February 7, 2014

As a Mom I am often finding myself 
in a flurry of thoughts, ideas, concepts, things "to do", etc when the morning coffee has ignited my awake circuits.  And then the day hits in all its glory.  Get in the car, go do this, go do that, get back home, walk the dog, train the dog, make phone calls, clean dishes, laundry, get Daniels laundry done, make more calls, and then kaboom!  That ignition switch turns off and all of those wonderful little creative animals scurry back into the crevices of my brain to hide away until I can handle thinking of them again.

I get tired very easily.  To be a busy Mom is a giant job in itself.  And then to be a Mom of a 16 year old boy with a deformed brain, seizure disorder, gtube feeding schedule, daily therapy routines, nursing, doctors appointments, diagnostic tests, equipment, medication, and endless worries puts me right onto the ledge of "how much more can I take?"

I can't believe its February already. I truly do not understand where January disappeared to and honestly think there is some kind of cosmic conspiracy going on.  Then again, my memory has been questionable and my focus right there with it.  Those moments frustrate me when I see people in the grocery store who I definitely know and yet can not for the life of me remember why.  Usually hours later it hits me, OH YEAH, that's Jonie Smith, little Johnny's Mom from baseball 5 years ago. 

February has been walloped with snow this year.  This week as a matter of fact and that has been nothing short of a giant white chilly blanket of depression.  When you have a 4 week long sinus infection, and chronic fibromyalgia, the cold just stabs you like knives leaving you longing for a hot fire in the woodstove and someone to hug you. 

Its been cold too.  Not just normal winter cold but "ouch" the air hurts cold.  As I walk the dog along the trails we carve out for his little legs in the snow, the one thing I always notice is how brilliant the stars are.  Beautiful really.  I think it is the silence and the lack of leaves that makes the stars more pronounced.  Tonight the moon looked about half size and the snow was almost blue. No need for a flashlight.  My point, you ask?  By finding and holding onto the beauty and peacefulness I am able to sustain myself for the 5 minutes or less that I allow little Henry to pee or poop.  His feet get too cold.

February is suddenly here spitting out red hearts and chocolate displays for Valentines day.  On my desk of mess, lies a fold called "blessings basket".  Its pretty fat at the moment. It contains copies of checks, cards, gestures I've jotted down, and basically everything and everyone that I want to thank. People who have blessed our life with their kindness and loving gestures back to December, maybe even all the way back to Daniels WONDERFUL Birthday Card shower.  Each time I go into CVS or Big Y I look for pretty thank you cards, and pick up one or two.  I have lots of little kind words pop into my mind, and have so many things to say.  But I can't even get myself to comb my hair every day. Getting through this blessings basket is now my biggest goal.  I saw a billboard today with someone I know advertising their business, and thought to myself, wouldn't it be nice to just put Daniel's picture up there and say "THANK GOD FOR ALL OF THESE WONDERFUL PEOPLE WHO CARE ABOUT US"

Was it a pastor at church that gave a sermon about gratefulness that just stuck in my brain of molasses and fleeting thoughts?  Probably. The extremely important reality is the actual grateful heart that is inside my achy body.  Very grateful.  As I am writing this very blog, I wish I could record the sound of Daniel laughing hysterically on the monitor.  He is just happy, and looking around, like a silly teenager having a giggle fit because they are just so exhausted.  He has been strong this winter.  God's hands have held him with love and protection because not a single cough or fever has presented.  I am so grateful. 

There have been some spectacular miracles in my bubble, or on my "planet" this year.  Many of those miracles are simply people right here in Newtown and Sandy Hook.  People who read my words and realize that they are simply an expression of the love I have for my family.  It is difficult beyond measure to raise children like Daniel.  Some people have a hard time accepting help, accepting kindnesses from others.  But I know that God calls us to care for eachother.  Kindness counts and being thankful counts.  Through caring for others and through receiving care the concept of kindness is nurtured.  It is those who have least that often want to help others.  A thankful heart will do that do a person.  Many people just turn a cheek, because they have their own world to look after.  Each one of us has something.  A sick relative, financial problems, loss of a job, and the list is endless. 

I am digging deep for the words here to express the fact that God gives so much to us.  He blesses our lives with each other, with this place we live, with the food we eat and the clothes on our backs.  Who are we to hold onto everything and turn away from each other when there is need?  I do not just mean giving things, I mean giving of compassion. 

Daniel is a challenge for me.  I am 47 years old and I have dedicated my life to provide him with a life.  I am blessed to have him and he deserves my undivided attention and care.  All of my friends out there also with severely disabled children will nod a giant virtual nod when I say that the world does not help those who sacrifice themselves for the sake of others.  The money is sucked away from some big greedy money vacuum.  The cost of what medically fragile people need, and the stress it puts upon the families causes the unraveling of many families.  Sometimes there is barely money for food and gas.  Other times there is such lack of sleep and illness on my shoulders that I can't function.  There certainly are many days that I just fall down to my knees and pray to Jesus that I can't do this on my own.  He tells me to step out on faith.  I know He is with me.  The spiritual world is all around us.  We can see more miracles with a heart of gratefulness.  Try listing the things you are sincerely thankful for. That list will start with superficial things, and as you go on and on it will evolve into concepts, feelings and emotions.  Suddenly you find yourself thankful for someone who you have never thanked!!!  By thanking them, the karma is fed and miracles can continue. 

To end with a moment of thanks, my friend dropped off a bag full of frozen home made soups today at my door step.  It may sound crazy, but it was very exciting for me to have so many home made soups. I'm not the greatest cook.   But many hands made them, and I think that there is some beauty in that generosity.

We will continue on in the difficult journey.  I know that my pile is high and my burdens are growing.  We don't know where life will take us, because there is no savings plans, or retirement programs, or plans for the future.  There is only tomorrow.  If tomorrow Daniel stays healthy, happy and engaged in life.  Then that has to be enough.  Anything extra is a bonus.  We will probably never have that new kitchen, or leather living room chairs, or get rid of the 1970's wall paper.  But its only a physical house.  As much as I struggle with want, I aspire to being a person who is much more eager to give.  and to thank others.

Tomorrow I will try that Tortilla Soup.  Sounds delicious.

Up late

Give me some air

I just want to breathe

I am laying here lonely

Beginning to grieve

For the life that I wanted

I thought we would be

But your angry and distant

Disgusted with me

I am still just the same

Blonde hair girl with a name

I'm just needed now deeply

From someone in pain 

As you snore and you dream

I'm awake and I'm cold

I'm sad with no one to hold

So I care for your son

Watch him here all night long

The dog barks and I cringe

It's the same fucking song

So I sing it again and close my eyes

The barking gets worse

Daniel starts to make cries

Time to get up again and take a deep breath 

The only time I'll be loved 

Is after my death.