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. 

Sister leaves, Football struggles for Thomas and Henry howls and makes us laugh

August 20, 2013

There is a warmth today that is uncomfortable. I washed Daniel's van and it became quite clear that I chose a project I wasnt going to enjoy today.  

Daniel is, after all of my bragging about his healthy state, suffering from gunky congestion today.  It just goes to show you, that when you least expect it, expect it.  And we are managing that as we always must do.  Daniel finished up his STARR summer school program, and is basically hanging out until the rest of August melts away and school starts again on the 27th.   He had physical therapy today, and his hamstrings are terribly tight.   I need to do more.

Sarah is just about finishing her packing for her move to college on Thursday.  I am pretty sad, as most Mom's are, but she is the sunshine and the fire in this house.  Her vibrant personality shakes the walls and fills the halls.   I just don't know how it will be without her.  Thomas will be busy, but I know it will be strange for him to no longer have her to talk to.  Daniel, of course, is unable to speak and communicate with us on an advanced level.  She's heading to Wagner College to study Arts Administration and she'll be very close to New York City.

 FOOTBALL 2013....

Football started up the first week of August.  Thomas has been struggling with some emotional issues, and I worried that he wouldn't do well.  He got into conditioning week and just felt like he had no passion for anything anymore.  I reached out to the coach and to his trainer at the NYA to see what I could do to help him, what did they suggest?   But sometimes questions are not responded to.  People are busy.  I'm the one worried about this Thomas.   This Thomas who is brilliant.  Who, we discovered has perfect pitch.  Who, taught  himself to play a Tenor Trombone with an f attachment in a few short weeks.  Now we are paying off a Baritone Sax and a Trombone.   This Thomas who played and did an improv solo in a jazz band consisting of adults and highschoolers.   

But Football...  he likes the game.  He just feels like he doesn't understand how he can "EARN IT" if he never gets the chance to apply skills, and take instruction.  I just look at him....yes he is a bigger guy, and yes he needs to be faster, and to move his feet.  But about that, he is sharp as a tack, smart, and eager to please.  Last night at practice he hung off to the back of the pack, he looked down...and I was worried about the things that are red flagged in therapy.     Well, anyhow on the football thing, he is not fast... and even though everyone tells him he has potential, he seems to spend so much time just standing on the side or kneeling.  I don't claim to know that much about the sport.... but I do wish the kids who are in need of "earning it" time, got more time to try.   Maybe if John had been more patient and more involved, and got in there like the other Dad's Thomas would try harder.    Instead he has me...   THAT lady, with the wheelchair and the little black dog.   Urging him on, in her mind, as he struggles through the running.

The other parents tell me encouraging things, but I have a boy who comes home feeling like "crap".  I don't know what to do.  Except stay positive.   

Boy do I love the sound of that saxophone when he just picks it up and that amazing bass sound just comes soothingly out of the horn.   

I am doing something to  help both Thomas and I now that Sarah will be in school and I have one less child to concentrate on...  We are going to see a nutritionist and get on a healthy eating and exercise plan.  Both Thomas and I are overweight, and I know that it will be better for both of us.

So already the summer of 2013 is winding down.  The Sandy Hook School kids are spending another year in Monroe.  Thomas is going into the 7th grade and that means the Middle School.  Moving along.

Daniel...  Daniel just stays in his program at Reed School.  He isn't progressing along grade to grade...because he doesn't have a grade.  He just has "Daniel's speed".  The same bus, the same room...and all around him... new 5th and 6th graders.  I don't know how I really feel about that.  Is it the best thing for him since he is now almost 16?   But what other options would I have for him.  I don't know.  I need to know.   

And finally, there is little Henry.  Henry, who at this moment is 11 weeks old and 5 pounds.  Our little dog, who came to be with us in July...  who is in full blown puppy stage.  Henry is awesome.  I'm trying to figure out what the training is going to look like for him.  I suppose I had thought it was going to be somehow more organized, and yet I am confused as heck.  I am reading the books, and following instruction but he will be going to a puppy behavior class in September.   I know he'll make a great little service dog someday for Daniel, but  we have a long long way to go.   I have NO IDEA how to train him to respond to a seizure, or stay by Daniel's chair.  It's all a new and exciting adventure.

It's almost time to prepare for football again.  Thomas told us last night that he would push harder and try harder.  I just wish someone out there was in his corner.  All of those coaches are busy guys, getting the best kids into the best spots and preparing for games.  It's all about winning.  I understand that.  And for the parents who have those high speed athletic boys out there, always starting, superstars in multiple sports...  they have fun watching their boys play.   But the parents like me, who have a boy with a heart of gold, who never gives up, but feels disheartened, who watches quietly while his buddies out run him and go out to make plays.  He runs slow, but the doctor said the pain he feels is related to the diaphram... not the lungs,  Asthma is better...      We had one said therapy session where he burst into tears and said he is tired of being "the big slow kid".  So back then I began to encourage him back to better nutrition.   

Well...  a Mother's love for her son is very different than a father's expectations.   I have a son who will NEVER walk, talk, or play any sport, or walk in a parade, or go to college, or run a suicide or a sprint.   The degree to which I have to manage this, trumps out alot of things that I know I should be pushing.  Such as the athleticism of my son.  

And sometimes, I think about how my own heart gets sad and lonely and I know my boy is like me.  Surrounded by people who like you, but feeling lonely because you are so profoundly different.

I had always hoped that when Thomas went to the football field, someone would have talked with him, encouraged him, gave him an extra push, and extra shoulder.  Because he's had a hard life.  He's seen so much adversity and pain.  And he is only 12.   And he lives in it every day.    But like Daniel, I am apparently also the only one looking out for Thomas's happiness.   But I don't want to get involved with the sports, because I feel silly.

The music, on the other hand, I will do whatever it takes to keep that music flowing.  He is gifted, and in love with music.  Afterall, we all need a way to express our soul.  Even a 12 year old boy.

Daniel's little dog is asking me to get him outside to potty.  We will find a shady tree.

What's new and all that jazz for today....

Sarah Hasselberger Graduiating June 22, 2013 from Newtown Highschool

Today is Tuesday, March 26th.  Every day I have a reminder on my phone that says "Daniel Blog done today?" And with all great intention I do wish I would get in here.  But here I am.  It is a TOTALLY gross gloomy day.  Sky is gray.  Trees, gray.  Ground, gray and mucky.  Spots of dirty snow here and there. Chilly outside and damp to the core of my achy bones!

Daniel is one hell of a spectacular miracle child because I really can't believe how healthy he is now after all of the December trauma with the surgery, and the Pancreatitis.  But he's been released to standing again.  And the goal, my goal, our goal, is to get him gradually more mobilized again.  How exactly depends on how this new spine of his reacts and responds.  But his legs are weak.  

So.  Many many many many doctors appointments lay booked on my calendar, which can be very stressful to navigate around the other things happening in the Hasselberger Family life.

Sarah and college.  She has been accepted at several colleges and her favorite at the moment is Hofstra.  My favorite for her as well.   But even with merit grants etc we still have a large out of pocket expense.  So I am sitting here looking at a giant pile of scholarships.  Praying that its all going to come together.  She is bright and shiny this girl.  So smart, working so hard all of the time.  School work, singing, dancing, viola, acting and all that jazz.  She is leaning towards a major in business and drama.  Maybe a minor in musical theatre?? But its not completely decided yet nor should it be.

It's a strange thing, watching Sarah get ready to go off to college, and knowing that Daniel would have been just two years behind here.  He seems so much younger than his age.

I'm confident that if I bust my ass just alittle bit more I will be able to swing it.  Thank God for college savings plans.

Gosh its so gray.  Depressing really.  Sandy Hook is depressing right now.  I can't say its easy to "find a happy place" around here.  People are trying, so much kindness.  But it is eerie here.  And sad.  My neighborhood is the part of town where several of the angels lived.  Its also where the killer lived.  That does something to your mental state.  It is unavoidable.

Well, I have to get back on track with search for grants for Sarah, and continuous searching for help with Daniel/home expenses because I can't work full time.  Even when and if I can, I have been out of the workforce for so long that my MBA and all of those years of HR expertise and ignored.  That too is unavoidable and frustrating.

I have a dream.  My dream is this.  Daniel has a financially secure home and all that he needs with NO medical bills for him and the family.  AND also in that dream is watching my children go to college and make a life for themselves.  They have had a challenging life.  Alot of pain and struggle.  But alot of love.

And when time goes by a little bit more, Daniel is still here with us.  Should we ever be able to retire, he will be with us.  Ensuring that his life is accommodated for... also part of that dream.

It's an uphill battle.  I am fighting off the demons while I climb Julie mountain pushing a wheel chair.  All I know, and what I believe is that God has a wonderful plan for us at the end of this uphill journey.  When we get to the top we will have a lifetime of accomplishment to look back down upon.  All of these challenges, as hard as they are, are life lessons.   I have faith.  But when it is gray, and gloomy.  And your body hurts because you are ill with fibromyalgia and too exhausted to care for yourself, and the pile of bills and lists of things to research and advocate for keeps growing...  well ...  it's hard to see the blue sky through these gray yucky clouds.  But its there.  I believe that the Lord will provide.  I don't know how that will happen, and it can't be on my request, but He will.

Maybe today the blue sky will come out.  Maybe today I will get a slap in my head that says..."Julie start exercising".  Maybe today something unexpected and horrible will happen.   Unexpected and horrible, is not just a concept in Sandy Hook anymore.

Sometimes I just want to get in my car and drive to the ocean.  And sit there all day staring at the sea.  Just daydream and let life give me peace.  

That's today.   A Mother's journey.  Onward to a fragmented myriad of tasks and to do's....all of them for my children.  I am not a good climbing point on Mount Julie.  It's a slippery slope and I have no tools or security other than putting my arms out in faith while Jesus throws me a life line.

 Life can be full of adventures.  Someday we pray that we will get him walking again like he used to.

Nursing School

I have wanted to pursue my nursing degree for almost 3 years now...but the critical state of my finances, along with the daunting task of taking care of Sarah, Thomas and Daniel has slowed me down.  For several years I thought...let me do this Primerica thing and I became fully licensed in Financial Services.  I failed miserably because it required much more than I anticipated.  And I realized I am not the best at Sales and quasi-tricking people into believing that they can have a life of financial independence if they just drink the Koolaid.  I made great friends, but I was in such deep doo doo with my own money...that it became too much of an ironic twist to help people with their money.

All the while...  Daniel needed, and still needs me.  In 2007 we started having nursing care through Medicaid.  And it gave me a little time to breath.  Work some part time jobs...for some money...  and think.

Going to Florida and back I also realized that I had to find some sort of back ground that is transferable.  And I spend more time in a medical capacity than anything else...and love it.  

I just simply do not know where to start....and how to do it.  With literally no money for school...and a child going to college in 2 years it is a Catch 22.   I need a career that will let me work flexibly...around Daniel's nursing and care taker schedule.  But I also have to get the schooling done.  Which I dont mind...I love school.

This has been my puzzle....and I need to solve it.   My husband wants me to go back into Human Resources Management again.  But so far no one wants a 45 year old prior HR Manager who has been out of the full time work scene for 9 years.

And I guess I don't blame them.  I used to do recruiting too.  But I am a very highly functional individual.

I need to solve my puzzle.  Take a step...build my own money again.   But I am here...taking care of 3 children...  doing virtually everything regarding Daniel's care.

I wish someone could guide me...give me a direction....  I want to be able to survive and still care for him.

College and the Future

Lean on me Always Daniel

Well.....  last night I attended a very excellent seminar at Newtown High School entitled "How to Fund College" ....   Sarah is a Junior, and I have to learn all that I can now.  I started envisioning her, walking around a campus, laughing with friends, sitting in lecture halls, studying in a library, and even working...  and I know that my daughter is going to find her place in this world.

And then I thought of Daniel.  Daniel would have been a FRESHMAN this year. And yet he is on a different path isn't he.  He is with us...  just always.  He won't graduate from anything, drive a car, get a job, or get married.  As a man, he will be with us.  And I wouldn't want it any other way.  But the "what ifs" of the future are puzzles that just can't be solved right now.   My sweet boy, who needs me for 100% of his survival...  is not a part of any "plan"....   I am lucky each day that he wakes up, and has a good day health wise.

This is where being the parent of a disabled child really warps reality.  The love they teach goes beyond what you can ever envision when you first learn their diagnosis and the shock sets in.  The journey is riddled with trauma and tribulations...  struggles and sacrifices...fear, confusion, decisions, and so much pain.   And yet when triumph over comes, and healing begins after surgeries, or bankruptcies, or whatever happens...  there is a sense of enormous satisfaction that fuels the resolution to be stronger and even more prepared next time.

Because there will be a next time.

College.  I know we will make it happen somehow.   But for Daniel...  we can not even plan past tomorrow.

And life doesn't care.

Sarah Rose Hasselberger my bright shining inspiration