Silly grocery shopping and a trip to Neurology

The day the seizures came back

I am really feeling beaten down, but not giving up.  I keep praying that somehow, someway, we will get ahead.  I have to take care of this kid.  I did a survey, and most people said that they would need between $100,000 to $200,000 to change their lives.   For me, $52,000 would put me in the position to fix up the house, sell it, downsize, put money in the bank, stay with Daniel and concentrate on his needs, get my degree finished and move south in 4 years.



So I don't know how I am even going to get myself through today, never mind will $52,000 into my bank.  But I do not want anything fancy, I just want a life that isn't going to kill me with a heart attack.



I just have to keep hope in love and stay at peace in my head.   Today, this morning, I woke up and the car Sarah uses had a flat tire.  Seriously?  I just had to laugh.



Life is insane.   I am praying that our you tube channel will spread and grow, because ultimately it will help earn money, as it works.  



One other interesting thing, I heard from an old friend, Kim, whose son Collin used to go to school with Daniel.  She went through the same ordeal with the insurance cancelling Collin's services, and her story is in the paper today.



It is ridiculous...  the way our kids are treated, its as if they just don't matter to the world.  Makes keeping hope even more important friends.



IF I LOSE HOPE WHAT ELSE DO I HAVE???     My John has been incredible lately, as have my children.  We wrap around eachother like a warm blanket because at the end of the day, all that matters is love.

Not a very welcome home, 2 broken down cars

Going Home Day, Travelling with the family

Barefoot Beach and a really nice day

The best time of my year, is when I can be at the beach in Florida.  Letting all of the stress and pressure go...  just for a brief spell...   It comes back 10 fold, especially this year, when we returned home.  Ugh.  Our lift van transmission went!!!

Daniels day at the beach

"What do you want to do today?" dilemna on vacation

Sarah arrives in Florida, our Naples adventure week 2

Please come to You Tube and subscribe to watch all of my videos



Life told thru the lense and from the heart.

Vacation is ending

I am laying in the semi darkness as the sun will be coming up soon. It's July 4 2015.  Tomorrow we head back home to CT from Florida and it's always a tough thing for me.  I do miss my Henry very much, it's been so hard not to let it make me depressed. So that will be nice.  But it's Connecticut in general that makes me weary.  The house I can't afford to repair and the cars too. Too much to clean. Working hard all the time and fighting the ridiculous depression. 

The culture, people, and climate down here changes me and after 10 plus years of staying here I know I am done with the North. 

But regardless of what my heart says or how well Daniel and I both do physically I am aware that vacation ends and there will be that massive pile of mail and that long long "to do" list when we get back.  

Thoughts on June 20, 2015

It is Saturday night, and I've been scrambling all day to get packed and ready to go.  Up until yesterday I wasn't sure if our vacation was going to happen.  And I guess that is pretty typical of how life with a disabled and special needs child is.

Daniel had surgery to have a Baclofen Pump placed inside of him, on June 4, 2015.  This is a procedure that helps to reduce spasticity in the muscles.  Daniel's spasticity issues were getting so intense that I wasn't sure if I could manage him on a plane, etc.  It was time to move away from the "oral" baclofen medicine, and to what they call "intrathecal Baclofen" .  so off to the hospital we went for the surgery.

Everything went well, and aside from a couple of complications, it seems to be working really well.

This morning I had some sort of a mental meltdown. I'm not sure what it was really.  But as I sat staring out into my backyard I felt tears streaming down my face.  This is journey is a tough one, and as optimistic and positive I try to be, and try to move myself towards being, sometimes it still just downright sucks.

The State of CT Husky medicaid people are trying to take all of Daniel's skilled nursing care away.   It's complicated, but essentially some person at a desk somewhere in Hartford has looked at Daniel's file and decided he does not qualify and is not medically qualified for on going nursing intervention through out his day.  They are proposing to end it on June 27, 2015.   Daniel DOES received nursing intervention all day long.   They are making me jump through hoops like a monkey.

So here I lay, falling asleep while I write.  Wanting so badly to spill out some devine words of wisdom, but I can just say that we are on schedule for vacation.  I'm really really sad to be leaving my Henry behind, but I think a break will do me great.

Great.  as I wait to find out our fate with the nursing care.

I am also very thrilled that my You Tube channel has hit over 1000 subscribers.  I hope that if you are reading this, you are also a subscriber.  I think its weird, but I honestly have NO idea if any of my family members (except my mom and sister) actually follow us there.  Most of the comments, and interactions are from the You Tube community.  Perhaps people are just still so new to the concept of vlogging.  I'm not sure.

Time to get some sleep.  I have to wake up at 3am.  Yes I said 3 am.

Olease keep coming back. Life is great.

Julie Hasselberger  June 20, 2015
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14 HOURS IN THE ER, READMITTED, MUSIC AND THERAPY

Baclofen Pump Surgery Day June 4, 2015

The day before Daniel's surgery June 3, 2015

The day before Daniel's surgery June 3, 2015

Challenges and Blessings of having a special needs child

Special Day in Lower Manhattan

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.

Mothers Day Creative Cupcake eating

Early Bird and Round Robin

When Will That Desk Be done???