When Daniel turned 17 years old.....

On November 22, 2014 my son Daniel turned 17 years old.  Unlike most kids, having a birthday for Daniel has always been a challenge for me.  He doesn't eat via mouth, so food is not logical.  Gifts? Well we can get him things he needs, but he isn't really cognizant of what he needs.  We sing to him, he likes that.  We give him balloons, he loves balloons.  It's not typical.

Daniel is not able to speak.  But we know he loves to watch and look at everything.  The mall, in our case, the Danbury Mall in Danbury CT is his favorite spot to just take in the sensations, sights, sounds, smells, etc.  He goes into this really happy state when we take him into the mall.

So on his birthday my husband John, son Thomas, Daniel and I walked around in the mall.  We ran some errands, had some food, but the main purpose was for Daniel to enjoy being at the mall.

Last year, when he turned 16, he received over 800 cards from all over the world as a part of a "card shower" that we had started.  It then turned into gifts, and visits from many people who just wanted him to know that they loved him.  It was honestly, one of the most amazing things I have ever experienced, the opening of the mailbox daily to see piles of cards and pictures.  Wonderful.  This year we didn't do a card shower, I really just have been so incredibly busy and overwhelmed.

And Daniel received two cards, one from his grandparents, and one from his Best Buddy, Ryan Williams, who we have recently become friends with through the best Buddies program at Newtown High school.  Ryan also brought Daniel a Newtown Marching Band and Guard sweatshirt so he could wear it when he goes to watch Thomas.  That was really sweet, Ryan and his Mom visited for a while, and it was a nice visit.  He's a great kid.

Special needs children like Daniel, do not have the ability to ask for anything,  They can't make a list, and stress out your financial capabilities.  Daniel is sweet, and quiet.  He asks for absolutely nothing but finds joy in being with people.  Sometimes, he doesn't react and it seems as if he is just staring off into space looking at the ceiling.  Well, he probably is, but he is most definitely aware of the fact that people are with him.

And there is the mother guilt.  "I didn't do enough for him", "I should have done more for him"!!!

After all, the fact that he has been alive and with us for 17 years far outweighs the odds they set for him when he was a baby.  He is a miracle.  He is a great teacher of many many lessons.  He receives love so willingly and looks at you with eyes that are deep and probing and gentle.

My life is completely dedicated to Daniel.  Yes... don't get that wrong... Yes I am dedicated to my entire family, however, they have abilities and independence.  Daniel however, needs someone to be his everything.  To arrange everything.  To monitor, everything.  To manage everything.  That's me.  Julie Hasselberger.  I am Daniel's Mom.

Did I do enough for his birthday by surrounding him with balloons and taking him to the mall?  I don't know.  I don't know what "enough" is for Daniel.  I just know that I love him so very much.
So what, it was quiet.  We heard from Glen Schallman, with a lovely "Happy Birthday" song, and from the teachers and kids at school, who also said Happy birthday in a video.  His best buddy visited.  And on face book probably a hundred Happy Birthday Daniel wishes, but he can't read, so I have to read them to him.

He is 17 years old.  For me...  its incredible and I want to shout it out loud to the world.  But it seems as though over time, as special needs children get older, the world just isn't listening anymore.  The world has grown weary of helping, hearing, caring, being there.

THAT is why Daniel has me.  I will never stop being his completely devoted Mommy.  Everything else takes a back seat.  He matters the most.  And my role of Mommy to Daniel, AND Sarah, AND Thomas, continues to remain the focus of my life.  I wouldn't choose anything else.

Special needs children rarely have friends.  When they have a birthday, it seems as though each year people care less and less.  It was so quiet on November 22, 2014.  But, Daniel turned 17.  And he smiled alot.  He knows we love him.

Life is just that way.

Watch this video from our you tube channel, "Julie Hasselberger"  Daniel...goes to the bone doctor, every day is a new adventure.

A BIG decision, being Christlike, Fibromyalgia, and Happy Birthday Daniel

November 13, 2013

It's cold outside, the chill and gray colors have slowly replaced our warm fall leaves and yesterday we had our first little snow fall in the morning.

I remember last year, anticipating Daniel's surgery with great fear but with great excitement as well. And now a year almost later, he has shown that it was definitely a great decision.

Daniels spine AFTER

Daniel's spine before!!

 

Making great decisions is not always that simple. There can be great risks involved that really completely lie on your shoulders. The life or death decisions for your child.  But I have felt all throughout Daniel's life that having a concept of "giving him the BEST quality of life that we can" has to continue to be the focus.  It doesn't mean we want him to do things that we do, even if he can't, like forcing him to eat and aspirate. It means preventing illnesses and dangers that will make him sick, and possibly fatally sick.

My life has been a non stop road of managing Daniel's care, dealing with troubled emotional relationships, facing the demons of depression, living in a world as a complete anomaly as a Mom. For instance,always being the only Mom pushing the wheelchair across the Night Hawks football

Daniel at football, number one fan, always with an entourage

field, accepting myself as a caregiver and accepting that I left a career behind to care for my child, desperately trying to make ends meet financially since only one full time job doesn't pay it all when you have a medically fragile child in your home, non stop advocacy and management of so many issues in the special needs world I simply can't list it, being there for my daughter as she went through High School and into college,

Sarah's graduation day 

and being there for my youngest son as he moves into his teen years.  Of of course there is a marriage of 21 years full of ups and downs with many days where I just cry myself to the point of dehydration, and then we face eachother and agree that we need to keep trying and do still have love, but need to heal,  and managing the home.

Probably should also mention, that I have been stricken with incredibly bad fibromyalgia to the extent that some days I am so stiff and in so much pain that I can't function.  The pain limits my enthusiasm for exercise, and my tendency to eat my emotions leads to weight gain.  Weight gain makes it harder to breath at night and then you don't get enough oxygen, and that prevents or slows down weight loss.   I spend every day in pain.  And sometimes the pain management is helpful, but other times nothing seems to help.

So the cold just rips through me like knives.  It is bad.  But I never falter in my daily trek of getting up to change Daniel and get him ready for school. 

Now we face the end of the 2013 year.  So much has happened since this time last year.  Good things and bad things.  Today, I am focused on birthdays that are coming. Sarah is 18 on November 20th. And Daniel is 16 on November 22nd.  

John says there will be no bonus for Christmas this year, and honestly I can't even think that far ahead. I have too many things juggling in every crazy direction.  I am in such a bad financial state most of the time, that just keeping things running is a great achievement.  Sometimes, it gets good, but then whammy bam bang boom, something goes wrong. Again.  And I carry on.

Working flexibly part time now, has been an interesting adventure.  I became licensed at the end of September for Property and Casualty, auto, home, life, etc.  for Allstate Insurance with an agency in Monroe, CT.  I really like the agent in the office, but he hasn't been able to pay me since August due to cash flow struggles. He is a great insurance agent, but his partner died in December 2012, and its been a rough road for him.   So ironically I'm working for free when I really need to be doing other critical Daniel related things.  And the money I am earning, is supposed to be paying bills.  I don't know what I am going to do.   

Isn't it ridiculous that my dream is to get myself into an excelerated BSN program and become a nurse.  If I can embrace the ugliest parts of the medical world, many which I have seen, I know that would completely love it.  

All I want to do is find a career where I can give back to the world.  I'm not sure that insurance is that place.   So how do I wriggle my way out of this when I can't seem to get to the end of each of month with a panic attack followed by a few days of meditation and prayer to revitalize my soul.  

So many people over the years have reached out to help Daniel.  In my heart, every time it happens, I just want to turn around and say God, What can I do?  How can I be your vehicle to give back.   

And the answer to giving back is never quite clear. Except sometimes a miracle happens when a child will meet Daniel, and learn about the world of a medically fragile child like Daniel, and that child will take on the task of volunteering, and helping a child like Daniel.  Years later, I learn that some of these kids are doing all sorts of volunteer work, and in a round about kind of way...letting them know Daniel, has given back.

I am just a 47 year old woman.  I'm no where near perfect.  I have many flaws, but I'm also not the career driven person that I was back in 2000.  I have an MBA, in Human Resources.

Before Work one morning...

Not only did I complete my degree while working full time, I was integrally a part of executive management and I truly most enjoy the training and development part of my job.  People make me tick, helping people, seeing them succeed.  There was nothing more exciting that promoting someone who had worked so hard, and seeing their face light up during that meeting when we promoted them.  I loved my job.  

As time went by, however, little Daniel in daycare became bigger Daniel with seizures, surgeries, sicknesses, and school issues.  His needs would make me worry at work.  Phone calls would come and I would have to leave, always promising to come in at 6 the next day.  My company didn't care about Daniel.  And the race home to Newtown worrying about him, because so bad that I would pray for changes.  

Daniel had his first hip surgery in 2004 I think??  I don't remember exactly. But by then I was no longer working.  I remember sitting with him, right after that double hip osteotomy and hamstring lengthening, and watching him in pain. I would demand that the nurses get the pain team, because he was having a reaction to morphine, and I learned how aggressive I needed to be to help my son.  It was during that stay at Yale when looking into Daniel's eyes I promised him I would be completely there for him.  No more nanny, just Mom.  No matter what it would take.

Now this also came at a time when our medical bills were so enormous, and our other bills were piled high, and we had exhausted all resources to make minimum payments, and more kept coming.  John's insurance didn't cover everything.  Daniel had to go on a long long waiting list for state insurance through a title 19 waiver.  So it was 5 more years of hell.  Of almost losing the house, of filing a partial bankruptcy to clear out the giant pile of debt, thankfully keeping the house and assets.  Well, whatever assets there were.  We had a very helpful and compassionate lawyer who helped us get through a bad time.   And of course, any past debt issues like that haunt you for years, resulting in problems from a parent perspective with Sarah's college.   I just keep going.  It's all you can do.  And I say it, again, and again, and again, and again, "this society, our social programs, our country, does not care about the middle class families who have this type of extremely debilitating circumstance." They want us to be living in poverty with absolutely nothing before they provide any help."   I posted an interview with Russell Brand a little while back, on one of my blog entries.  I won't keep going on that topic.  It makes me cry.

At some point, once I had become full time advocate, Mom, financial manager, care giver of Daniel, something inside my body triggered the Fibromyalgia.  I began hurting physically.  Hurting all the time.  Depression got worse, and I was not sleeping.  Everything got harder and harder, even though I tried to keep a smile on my face.  I kept wondering WTF am I being punished for now? 

As I've mentioned in the past, Daniel had a virus in utero called CMV, Cytomeglia Virus. It attacked the formation of his brain. The virus came from me, obviously.  And it is quite logical that the virus also was the trigger for the onset later in life, of the Fibromyalgia.  There is medical evidence, even though no one can admit it.  If YOU have never heard of CMV, and you are pregnant or planning on having children...please educate yourself about it.

So the journey goes on.

 Julie managing pain. Julie managing Daniel. Julie managing Sarah and Thomas with all of their unique needs and dreams. Julie managing the financial state of affairs. Julie reaching out for help. Julie going to years of pyscho therapy, which I am not afraid to admit.  And Julie begging her husband to deal with his own depression, anger, and physical issues...all to no avail.  So the anger cycle in the house was never broken, and Julie had to do all of the above, always never knowing when an explosion would rock the house.   With compassion, and patience, praying for her husband to understand things from her, well, from MY point of view.  I'm not sure that he has ever accepted the fact that I believe Daniel needs a full time care giver and "manager" per se.   He blames all of our problems on my decision not to work full time.  Which is completely ridiculous in my opinion based on all that I have done for Daniel's life.

So you see, there is so much when you peel away at the layers.  One thing attributing to another thing...  complicated.  I have always been a type A person, wanting to resolve problems. Desiring to talk things through. Advocate of therapy. Wanting to put things out there and face things.  But within my midst was the opposite point of view.  Such as, keep things private. We do not discuss our family issues in public.  Things should be kept quiet. People should take care of their own, and not others. And so on.  This, to me, is a torturous and lonely existence.  Because I believe that God calls us to be brothers and sisters.  I believe that we are on this earth together as one, and part of our love for Jesus is to let him live through us.  That is my spirituality. I don't prescribe to a list of specific "you must do this, and you must do that" or else you do not get into Heaven.  

ON my baptism day at Walnut Hill  community Church

I have let my spiritual self evolve by opening my eyes to the Lord and letting his spirit guide me.  A personal relationship.  And through our personal relationship with God, he calls on us to be loving and to help eachother.


So, no, I will never live in a bubble of "our family is a quiet, non spoken, private, affair".  As you clearly can see, I affirm that in my approach to life.

As do many many other great prophets, philosophers, and just people in general.  But needing eachother, and helping eachother, we are learning and growing in Christ.  To be Christlike, to me anyhow, does not mean to just care about yourself.  

And so, I reach out. I embrace others. I love the children, and the animals. I ask for help because I honestly and completely need help. The universe will present to me a miracle some times, and other times I face stress.  I love this town of Sandy Hook, CT. It is my home.  It is the home of my family.  I do not want to leave here, because the schools and the teachers are so incredible.  My friends and neighbors are beautiful people.  Yes, it is the place where tragedy struck on 12/14/12 and yet, the compassion and love that emerged from that surely made the bonds much tighter.   So I do everything I can to keep my house, to provide for my family, to support my husband while he works so very hard at his job, and to, again, keep the concept going of "giving Daniel the best quality of life that we can".

No matter what it takes.  

Please send a birthday card to Daniel, he is turning 16 on November 22 and we are having a "Card Shower" for him.

35 Bennetts Bridge Road
Sandy Hook, CT  06482

Thank you, if you are one of my friends who has come to the end of this blog entry.  I love you.  I am so grateful for friendships, for prayer, and people who genuinely understand how hard this journey is.  I will be forever grateful and forever have you in my prayers.  

Wow.  All that I just wrote there..  Came out of me like lava.  lol.

Hey,I am a Mom, too.

I AM A MOM. 

October 7, 2013

I am a Mom.  I have three kids.  They are 17, 15, and 12.  Lot's of people are Moms.  There are thousands of kids just in my town alone.  And of course, they all have a Mom.  Typically.  Not always.  But they have someone.




Being a Mom to a disabled child in a wheelchair is just another way of being a Mom.  But instead of enjoying PTA (who has time for that?) meetings, going to Yoga class, meeting friends for coffee, and preparing meals for the family I have a long list of responsibilities.  I don't feel like I am always very good at organizing myself, and that is because I feel like I'm stuck in quick sand, gasping and grasping to get back onto the solid stuff.

If you asked me at this moment, What does taking care of Daniel entail, I will spill out whatever is in my head...  here goes! Spilling off the top of my head.  This is not a complete list.

• Gastroenterology for nutrition and stomach related disorders.
• Pulmonology for breathing, asthma, aspiration risks, making sure Daniel doesn't get congestion.  Pnuemonia prevention.  Need to get that Flu shot!!
• Neurology. Seizures. PMG causes seizures.  They are the silent demon.  Need to go for EEG's and blood work, because seizure medications are tricky.  Must monitor blood levels in association with growth.  Neurology is my right hand with Daniel.  
• Endocrinology. The bone doctor, as we call him.  Crap, need to get the blood work there too.  Daniel's bones are demineralized and endocrine helps us monitor calcium and phosphorus in the bones.
• Orthopedic surgeon. We have two.  One is for the hips and general ortho needs.  Two hip surgeries, and the liklihood that eventually the hips will go dysplasic again.  Every 6 months the x ray tells the story.  
• Spinal orthopedic surgeon.  Now that Daniel has a back full of metal straightening up his spine, there are concerns and continual monitoring of the bone fusing, and any possible issues of infection in the site.  Scoliosis would have probably killed him eventually.  But this surgery was risky.  
• Physiatrist.  What they call "Pediatric Rehabilitation Medicine" helps us with muscles and spasticity, recommending and prescribing surgery, writing scripts for equipment needs, and inspecting braces, botox injections.
• Therapy.  Monitoring what is going on with Physical therapy, Occupational therapy, and speech therapy both at home and at school.  Researching additional therapy, music, aqua therapy, etc.
• Social Services and Katie Beckett waiver program.  Daniel's insurance is acquired via social services and the waiver is his title 19 waiver.  I have to make sure appropriate forms and paperwork are completed on a timely basis.  When things are not approved, appeal.  Call for help.  Request nursing hours.  It's pretty confusing because I do not have a case manager per se.   We have two different agencies providing home services.  

• Equipment needs. 
• Supplies ordered. Medications renewed and picked up. 
• Issues resolved with broken equipment from the equipment repair department. 
• Special needs BED breaks, must contact New Hampshire.  Same for the lift system. Prism Medical
• Mri's, x rays, EEGs, blood work, barrium studies, endoscopies,   
• ATG Rehab. 
• Professional Home  Care.
• Byrum Health care.  Order diapers. 
• Buy wipes.  Buy diapering products.
• Lift van.  6 month maintenance.  Repairs. Ride-A-Way in East Hartford is one hour away.  
• School Education program.  IEP's and PPT's.  
• Drooling. 
• Hand biting. 
• G tube changes. 
• Appropriate toys, and activities.  
• Home standing.  
• Apps.  
• Laundry, pads, bedding and keeping his room sanitary.   
• Monitoring him while sleeping. 
• Financial concerns for his future.

WHEW!!!

And hey what about this too.  I am also the regular Mom. Taking him to the dentist (needs antibiotics first).  Hey we have a "regular" pediatrician too for "regular" things like immunizations, physicals, and general illnesses. Daniel needs new clothes for the seasons, and he also needs to have hair cuts and a little bit of shaving.

Watching Thomas play football

And now, we have Henry the "service pup" in training.  A wonderful thing, but to me, like a newly acquired child.  Not just a dog as a pet, but a very special companion trained to be with Daniel and bring him support, friendship, comfort and more.  Woof.

Motherhood is about unconditionally loving your beautiful children, and providing them with everything they need to grow into adults.   Special needs Motherhood, is unconditionally loving and caring for a completely dependent individual for the REST OF YOUR LIFE, or the CHILD's LIFE, whichever comes first.

Daniel, Henry and me always right there...

I am a Mom.  I am a wife.  Since I don't work full time, or much time, or any time sometimes I am expected to manage all of the finances, manage the home repairs, manage the auto repairs, grocery shop, cook, clean, dog duties, go to the dump, and everything else you can think of  regarding a home. I am a Mom.  Just like so many other Mom's.  I don't sleep much.  I have health that is deteriorated. I dream about not worrying about money.   I wish I would stop signing into the bank app to make sure checks didn't bounce. I rarely have "enough".  I always have to juggle.  I hate the anxiety on top of everything else.

I try to make ends meet. (help)  Daniel's expenses completely tip the scale. (help) The "normal" things like lessons, football, school lunches, and new sneakers I could handle.  Look at my list above, it's not even everything. Daniel is an expensive child.  Many things are compromised.

Some days I cry.  Some days I rally like a freaking soldier out to save the world. No going out to dinner, no second honeymoon by the sea, without a nurse I can hardly take a shower.  I love my kids.  One is successfully off to college, she's beautiful and smart.   The youngest is 12.  I'm still going to be doing all of the above listed things, year after year, while most Moms can find new hobbies, new jobs, buy new cars, and shop for clothes I will be sitting here trying to find ways to keep Daniel healthy and safe.  Special Needs Mom's are like that.  Our kids, don't leave.

This Pup is my best friend

Fundraising has helped so much. I need to pay for so much.  As I sit here today, writing this, I am worrying.  Costs here monthly are thousands above a normal home. People who realize the dark hole that this life can be,  reach in try to provide relief.  Sometimes it's money to Daniel's account.  Sometimes its a sunny yellow plant on my doorstep.  Sometimes its a bill from the plumber that says, amount due ZERO.  Sometimes it's just another Mom treating me like a regular Mom, but that doesn't happen much.  Because I'm special.  Inspirational. Strong. A role model. Incredible. Super Mom.  And then SuperMom asks for help.  Do you know that it's really hard to ask for help?  Now I've realized that God sends miracles in the form of connections.   People want to help.  And in turn they develop a relationship with a very special boy and his very not "normal" Mom.  I think Sandy Hook, CT is a nice place to raise my kids, I want to stay.

My children.

Well.  I am a Mom.  All Mom's have challenges. This is my challenge. "Providing Daniel with the best quality of life possible, while also keeping a roof over our heads and a safe car to drive, and food on our table."  

I am a Mom.  I am not super human.  I am lonely. I am depressed. I am hurt. I am stressed. I am happy. I am sad. I am exhausted. I am mad.   I am whatever God gives me as my daily dues.   I love my kids.  My kids love me.  This is not the Me I signed up to be.  It's all just fine, it's got to be.  Please, just remember "me".