Kindness matters

It's late and I'm tired but I'm here typing away

It's late and I'm tired. My right hand, wrist, elbow all hurt from too much texting and typing I guess.  I've found social media and internet groups to be such a place of connection and comfort.  As you can see from the many video posts I have put up lately, I am on You Tube and trying to build a channel, mostly for Daniel's benefit, but really I am not sure where I want it to go.  Sometimes you have to throw an idea to the wind and when it comes back at you its completely different.

I never thought, for example, that I would have people privately emailing me for emotional support with all types of problems.  I never realized how many people are hurting and suffering with fibromyalgia like I am.  I never dreamed in a million years that I would ever get 10 subscribers, and we now have 89.

I am just Julie, the somewhat odd and eccentric Mom of three children.  Living in Sandy Hook CT is a struggle financially, and someday I pray that we will have the ability to move Daniel south and OUT of this expensive place with harsh winters.  20 years ago I would have told you my future will look like "me as an executive and owning a ski house in Vermont."  That ship has sailed to another port.

My young man who can't speak.  My young man who is so quiet and so simple, but yet always leaving me wondering HOW much does he actually understand.  Its so very hard.  But when he holds my hand with his soft hand, I just know he is there with me.  Whatever that means.

Please know that for any Mom to have a child with special needs is so very difficult, but that doesn't mean that the Mom is a super hero, she still needs hugs and friends.

It's late and I'm tired.  Positioned ergonomically horrible in my bed with my laptop on my lap....doing what I tend to do every night....  read and watch until I fall asleep from exhaustion, with Daniel's video monitor right beside my bed.

Be at peace.  Thank you for following us....  Please feel free to leave me any comments and questions here, on You Tube, on Facebook, where ever..

Until next time.
Signing off...

transformer blows and cancels show

Dan Stands!!!

Daniel the Band groupie

When your kid has talent

Dear blogger fans... 

Life keeps us moving for sure.  I've been thinking alot about my youngest son Thomas.  He is currently 13 years old and in the 8th grade.  Pushing himself through sickness he made it through 2 marching band performances yesterday.  As he was playing his marching band music on our piano this morning...  my mind focused on him.  He's an incredible kid.

 Thomas Hasselberger. in first grade he learned the piano and took a couple of years of lessons. He was in a couple of musicals (influenced by his sister of course) but when he got to fifth grade and put his hands on a saxophone, he became a different kid. First of all, we discovered he has perfect pitch. He switched to the baritone sax and started taking private lessons with Beth Doble at the middle school. She told me that he was really pretty amazing, and he quickly advanced past his grade level. In 6th grade he auditioned and made it into Western regionals, and was in jazz band in 5th and 6th. In 7th grade he moved up to the middle school jazz band, and also auditioned and got into Western regionals, missing the baritone sax spot in the jazz band by a couple of points. In the summer between 6 and 7 he decided to pick up a trombone. At the Danbury music center he quickly accomplished the trombone and played both trombone and bari sax. During 7th grade he played the trombone and the bari sax in band. In the summer between 7 and 8 he decided to pick up a bass clarinet. And we traded our trombone for a bass clarinet, which he is now playing. He also learned how to play the FLUTE!!! And surprised me by playing flute in the preparatory summer band of the Danbury music center. Thomas has a natural inclination for music. He knew this right away, but stuck it out in football. But now his main interest is music. He joined the marching band this year, as an 8th grader, and I assume he's doing quite well based on the feedback I'm getting. "Oh my gosh he got a 12 in the memorization test" etc etc.

I look at him, this tall big guy, who is smart, and charismatic and I wonder if there is MORE I should be doing to help him expand his joy of music. When Sarah was this age she discovered theatre, and voice lessons, and then RCA... it helped her grow and learn so much more beyond and with the Newtown program. Should I send Thomas to a different school? We now have the following instruments in our music room (previously known as the living room) Piano, keyboard, Baritone Sax, Tenor sax, bass clarinet, clarinet, flute, acoustic guitar, viola and violin (the last three being Sarah's, lol)

When you have a child, DANIEL, who will never speak, sing, play, dance, it truly brings value to every skill and talent that a person displays. When they find something that is within them.... its like a new person emerges. There was a time in my youth, when I was so engrossed in music (flute and piccolo), AllState first chair, marching band, and also in choir, but the flute was my thing. And I have not played in years. Its probably time. But my flute was stolen years ago, and my student flute is old. But this is not about me. I just am exploring how to further empower this boy who is 13 going on 16.

Julie Explains

No Nurse Sunday

dogpark, band andjuicypickles

Flood, speeders, and grateful for plumbers

Visiting the pulmonologist!!!!!!

Giant Ball of Rubber Bands

This is how I sometimes see myself. A big giant ball of rubber bands all wrapped up tightly squeezing and squeezing. Then someone pulls one way, and the other.  And I am just yanked back and forth, as I fulfill everyone elses needs.  I feel very loved by my children, but in a lonely relationship with no communication, so if you watched my videos, although I don't discuss it, it is heart breaking.



But Sarah has a way of just CRACKING ME UP when I need it the most.  We really do have some fun sometimes.  Even if its only Target.



Thank you for coming to Daniel's blog!

Strobe lights, and frustration extended EEG part two

Trip to Yale EEG part1

EEG and when a test goes backward

It is August 14, 2014 and Daniel has been in patient at Yale New Haven Children's hospital since Tuesday morning, August 12.    He has a head wrapped up in gauze to protect the bunch of electrodes glued firmly to his head.  He is here because we wanted to record his neurological state when he experiences what I call one of his "hypertonic" episodes.  And in true form, he has been completely relaxed and calm during the entire study.

I never thought as a Mom that I would sit and silently wish for my child to have a melt down and go wacky.  But if he did, we would have been out of here.  I get too curious here, about what is going on with the baby down the hall being rushed into the PICU.  The hospital is a weird place.  A blend of routine, mixed with emergency, mixed with exhausted parents and bored administrators.  When I went downstairs to get a sandwich yesterday, I was standing next to some "important" looking doctor types discussing grants and blah blah blah and thought how ironic that it all seemed so "corporate" in their words.  I was anxiously waiting for my sandwich because I had no breakfast, or dinner the night before.  I should have packed food.  It gets too expensive.  With my infected sinus pain, and exhausted brain, I stood next to these two well dressed, good smelling, seemingly very intelligent looking men.  Talking in a language I practically didn't understand.  

Daniel is here because he has a brain deformity that I don't understand.  That no one can explain it fully to me.  When he goes into these freak out episodes, I am the one who bears the blast of the stress of it.  And he has to experience it.  But here, in this controlled environment,  he just lays there watching TV and looking at the ceiling with a glazed sleepy look on his face.

I am so tired, and wishing I could just ask my child what is wrong.  Instead, this sophisticated test of his brain, created by grants probably from some big important doctor people like those guys in the sandwich line, isn't doing what it should.  Or, he isn't doing what they expect him to do.  But kids like Daniel don't perform on cue.  They are a mystery.  It's part of the journey, the unraveling of mysteries.  Or the continuation of the wonderment that is a deformed brain.

Julie Hasselberger
Aug 14, 2014

Hanging with Thomas and Daniel

Nose Doctor!!

Sorry my blog entries have all been video blog entries, I will be making attempts to write again.  Have a wonderful day!

Tag Sale

Oh I don't think I love tag sales anymore but it turned out to be ok.  Ya do what you have to do, you know?  It's a crazy ride this thing called life.  I still have furniture that needs to go, and we never found the person who bought the bin of barbies.



Please subscribe to my channel.

Dealing with episodes. Very frustrated

http://youtu.be/gkzcM86W3xs

DANIEL SAYS, "COME PLAY ALL NEWTOWN KIDS!!!"