Thomas and some big brass, age 13 2014

Thomas is a budding musician
I often wondered what my youngest son would like to do as he started to find his passion.  Not surprisingly he has quite literally submerged himself into music.  I remember playing the flute at that age and it was the one thing that I was really good at.  It was also a place where I could lose myself in the music.

This is Thomas, as the video shows, he's pretty versatile.  This mother is very proud of her children, and especially happy that they have a love for creativity in music.  I am not kidding when I say that this summer Thomas will be playing his main instrument, Baritone Sax, but in addition learning trombone, bass clarinet, tuba, and baritone horn.  Sarah found her passion in strings, she's a viola player.  She also sings, and plays the key board and is learning guitar.

Sometimes on a nice day, if you are walking down the very wooded Bennetts Bridge Road, you may just hear the sounds of brass as Thomas practices outside.  He is a musician, smart, creative, and I love it.

Daniel watches his siblings, older and younger, and listens.  I am not sure precisely what type of music he likes the best, but he is fascinate by the different sights and sounds.  And sometimes, at a show, or a concert he will just find the ceiling vents and lights more interesting.

Another drive to Staten Island

Any time I leave Daniel behind with a nurse I have a sick worrisome flurry of nerves in my gut.  But along with managing the life of my 16 year old fragile  child, I also have the responsibility of being Mom to my daughter. And my younger son. 

Funny thing this concept of driving somewhere alone with my husband John.  As 684 stretches out in front of us we sip coffee and discuss the changes to his company health plan. A bright morning sun warming my feet which are up on the dadhboard as if to say, ahhhh. Relax. 

Sarah has just finished her first year of college at Wagner College on Staten Island NYC. Out journey today is to get there, move most of her stuff out and take her out to lunch. She doesn't come home until Friday the 23rd.  

Wasn't it just yesterday we were shopping in Target for her first year siuoplies? Oh the pain and weeping I did when my daughter went to school and left home. Now in a blink she's coming back from college for the summer. Funny how that happens. 

With each exit sign that rolls past I think about Daniel and his recent episodes of oxygen saturation dropping into the 80s. He was in good spirits when I left, but it's a 2-3 hour drive to the Verrazano Bridge. 

There is no way for me to disconnect from  constant concern and worry. Even sipping coffee, chatting in welcoming adult conversation and enjoying a blue sky day I can not get Daniels face out of my mind.  And keep thinking "will he be ok with the nurse until 6:00 tonight.

In some ways we find a tiny bit of balance in our life that allows us to go and move our daughters dorm room stuff home.  In other ways we are parents who live with this undercurrent of fear and concern. 

I'm enjoying this coffee.  I'm trying not to text home until we get to the Hutchinson parkway. 

Would you like some comfort with that chaos?

Living and caring for a child with many disabilities is like living in the middle of a busy intersection blindfolded.  You don't know if taking some steps towards the side will be safe or result in a thwarting strike knocking you off your feet.  Most people sleep at night, wake up in the morning, resume whatever it is their life requires.  Some people know, for instance, that they will shower by 6:30 am, and be to work by 8:00am, have their lunch promptly at noon and leave their place of work at 5:00PM.  They know that they will proceed home, have dinner, watch TV and go to bed.  Throw in some kid stuff, or adult stuff here and there.  Whatever. But with my Daniel I go to sleep not knowing if I will be up again three or four times in the night.  I wake up and have to assess if he is well enough to go to school, and I have to wait to make sure the nurse gets here in time for the bus.  Sometimes the days plans change on a dime, and next thing I know I'm in an ambulance rushing off to one of many hospitals that we use.

 

Does the brain function well in chaos. No, not really.  I think as women, and as Mothers and as people we strive for the comfort of knowing where and when we will rest our butts on our sofa.  Mothers are often talking about the balance.  Finding the "balance" in their lives of work, kids, etc.  Balance is good.  It keeps us level, and when we go off balance we go wacky.  We get manic or we get depressed, overwhelmed and exhausted. 

 

Every once in a blue moon I find a few minutes to sit and think, like now, and I feel like I am roaming through a long hallway of doors, and those doors all have stuff to do inside them, but I don't know which one to open or go into.  Its as if I'm wandering like a lost soul, and then suddenly I am back with Daniel in his room doing "special needs Mother stuff".

 

Tuesday night, May 13, 2014 Daniel was doing well, and nurse Marques was getting him ready for the tub.  Suddenly his temp starts going up up up. by 8:00pm he was 103.  This is the kind of stuff that unravels my warped need for comfort, and balance. Where was I when Daniel had this freak episode which included a significant drop in his oxygen? I was next door at my neighbors house. She lost her 54 year old son, completely unexpectedly and John and were paying our respects and drinking tea. After that,  I thought it would be a normal night at home.  By 10:00pm I was sitting in a crowded emergency room waiting for Daniel to be seen, watching him feverish and breathing laboriously..

 

Its like that.  Unpredictable.  Unplannable.  Chaotic.  Raising Daniel Hasselberger, you see, is a lesson in walking on a balance beam.  With unlimited amounts  of wobbling and bobbling. 

There is very little time in my life for peace and relaxation and friendships.  Having more of that may restore balance in a life that has been falling off balance for so long.

 

I am, to many, a wanderer.  Following the tracks of a terrible condition that afflicted my child.  And quite quite literally I never know which way they will turn. 

 

 

 

 

Julie and Wendy finally meet!!!! (+playlist)