I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Tuesday, September 23, 2014
Sunday, September 21, 2014
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...
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...
Wednesday, September 17, 2014
Monday, September 15, 2014
Sunday, September 14, 2014
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.
Thursday, September 11, 2014
Sunday, September 7, 2014
Monday, September 1, 2014
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