The "Julie" episodes

I've been a special needs Mom for 16 years and 6 months.  Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed.  My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.

But here's the "thing".  I am only human.  I also have two other "normal" children, Sarah and Thomas.  Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball....    And as they age and grow I proud just like other parents.   The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent.  My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness.  It happens quite randomly.  I can't control it.  It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent".  But I'm not.

On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students.  Thomas is ONLY going into 8th grade but he is allowed to participate.  He is so excited, of course, being the blossoming talented musician that he is.  And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid.  John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.  

And then, it happened.  The "thing".  Tears welled up in my eyes and my heart started to pound.  I can't stop the tears, so I have to let them pour.  I try to hide and slouch down, but my husband keeps whispering "whats wrong?  are you OK?"   I wave him away and say "just give me a second".  Because I am thinking of Daniel.  Daniel who will never march in a band, sing a song, play a cello, or write a story.  Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady.  Graduate, and go off to college where she is now thriving.   Daniel WOULD have been a senior next year.  He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.

I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing.  There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.

By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents.  These parents don't know about Daniel, most of them, so its nice to just be one of the crowd.  When I start showing up pushing the wheelchair, people treat me differently and the kids stare.  It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".

Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts.  I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form.  He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.

Yesterday was June 12, 2014.  One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system.  She is 21 and can no longer attend.  The school had a lovely ceremony and reception for her, her name is Emily.  It was a beautiful moment, profoundly happy and sad at the same time.  The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish.  9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly.  Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.

I must conclude with something that will change the depressing nature of this post.  The love in that graduation ceremony yesterday was something that you could feel in the air.  There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met.  It was a beautiful testimony to what these kids teach us, and show us.  It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds.  And her brave and dedicated family who have dealt with so many challenges.  

(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)

I have to have these episodes, its just in my nature.  It's just who I am.  And I never claim to be super woman who can endure this life with the strength of a giant.   I'm just Julie.  Failing and succeeding just like everyone else.  The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive.  That is a role I have gladly accepted, even with all of the sacrifices that it brings.  I am entitled to a good cry.  It cleanses out those feelings.

The Grawahhhhuation cap

Just want to mention that my daughter came home today with her cap and gown.  Graduation Day is Saturday, June 22, 2013.   We decorated the top of her cap, which apparently is now a traditional thing.

My little girl is getting ready to launch.    We will bring her brother to the ceremony on Saturday, I just hope he will be ok.  It's one thing to sit for three hours on a bleacher. Quite another to be in a diaper.

When you think about the fact that oldest child has really guided herself to this point and both academically and arts oriented.  It's pretty cool.   I can't wait to see her in that cap and gown.

Only two days away now.

I love my kids.

May 30, 2013 SUMMER IS HERE!!!

May 30, 2013

It's a BEAUTIFUL day here in Sandy Hook, CT .  Seriously, the sun is shining and its supposed to be summer time warm today.  Hard to believe that June is around the corner.  May has been a whirlwind of concerts, plays, events, stressful things, sickness, broken washing machine, more concerts, Sarah getting her license, and more.   Daniel, in his quiet life, watches it all smiling from his wheelchair.

I am so very proud of my children.  Sarah has just excelled over the years and followed her heart.  Now she is getting ready to go off to college in August.  Unreal in so many ways.   Thomas is my little sweet big guy.  Taught himself how to play Trombone this month.  And can't wait for football.  I have to find something to do for the summer.

I still have not been able to get Daniel anywhere that he could swim, although I know how much he would love that!!

Fun with paint at school!!

Water time!!

He's been sick with an upper respiratory infection that created alot of congestion.   Off to the ER we went on Monday and the x ray did not show pneumonia!!!  Thank you GOD.  But he's pretty sick, even today not looking too well.   But his resilience never ceases to amaze me.  I honestly never know what to expect with this kid.

I am sitting here in my office writing.  My office that is also my bedroom because John exiles me in the middle of the night due to my snoring.  I have to remember to call the ENT to look at my sinuses.  I never have time for me.   Anyhow, just sitting here thinking about how many things kids are doing in the Spring, whether its sports, theatre, dance, or whatever.  Graduations every where.  Proms, and weddings and life changing events for families all around.

And then, there is my Daniel.  He is my buddy.  I adore spending time with him, and it is nice that he clearly likes his one on one time with Mom.  I just wish for once, there was some special event. Some special exciting new thing for Daniel.   So I have been praying that somehow we can figure out how to get a dog for Daniel.  I can't afford to buy a puppy these. days.   But a friend of mine is helping me reach out on Daniel's behalf to possibly acquire a dog for him.  That would be a big event!!

All I can say is, please be grateful for the gifts that your children have.  Don't be sad that they are growing up and becoming independent. It's what is natural and part of life's process.  Moving on and carrying forward to the next moments of life.  Time doesn't ever stop.  I have to remind myself to be grateful for the positive and wonderful family that I have.  Well, children anyhow.  But even with our dysfunction somehow they manage to be smart, resourceful, talented, and loving kids.

It's May 30th.  The sounds of birds and lawn mowers.  And in here, the sounds of nebulizer, vest treatments, oxygen machine humming and feeding pump whirring and beeping.  I don't like congestion.  Too many scary variables there.

Enough for now.  Praying for Daniel to get a dog somehow.  Praying for our family and that financially things will get better. Praying that I will finally pass my P and C exam. Praying that God will touch our hearts and heal the things that harden our hearts.  I am grateful.  Very grateful.

Peace out from Julie, Mom to Daniel, (bi-lateral diffuse Polymicrogyria secondary to CMV infection in utero. Non verbal, feeding tube fed, wheelchair, seizures, respiratory problems, othopedic problems, severe gastrointestinal reflux.)

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.