Disillusionment

I am not having a day full of joy. I want that, but sometimes even the happiest of days can turn sour in a heart beat.  I wasn't supposed to be alone at the mall today.  I was supposed to be having a joyful day with my husband.  But.  Bing bang boom. Yadda yadda. I'm alone. 

I would like to ask you dear Santa to put a good word in for us. Lol.  My heart is happily waiting for my daughter to meet me here at this mall. Where I am feeling sad and in need of a hug. 

This is a hard time of year.  And the best time of year.  I wish I could buy stuff here.  But instead I am just dizzy and hungrily and needing someone to rescue my heart.  And here comes Sarah. God is good. 

My little Sandy Hook at night (+playlist)

The Daniel Factor

The mystery of Daniel carries on. Bloodwork is all normal (YAY) but he was crying out in pain today several times, really crying, as if he was hurting very badly. So Jan 2 he has an appointment to see the orthopedic because his P T at school thinks maybe its his hip? He's a decent hypothesis. I can't tell you how much I hate when he cries like that, I get so upset and agitated.

The Daniel Factor, that is what we call it.  The random unexpected unexplainable rapid changes in Daniel's physical state, or emotional state.  The Daniel Factor.

Its December 13, 2013 and I as m freezing cold, its late, and Daniel just fell asleep.  When he falls asleep, then I fall asleep.  Or I try to.  Most nights I have to take a Klonopin to be able to knock off into a doze.  It's a sad state of affairs really.

Yes, the Daniel Factor. What will tomorrow hold.  We shall wait and see.  In the meantime, lets have have winter storm named Electra and freeze our butts off.  Snow.  I am not thrilled. Brrrrrrrrr.

On living in Sandy Hook, a reflection of thought

On living in Sandy Hook, a reflection of thought

It's cold. The sun is gently shining and reflecting off some chunks of snow still left on the tree limb outside the window where I'm sitting.  I have just pulled myself away from facebook.  There are link after links of touching videos, articles, stories, and pictures of the lives so violently taken from our little town.  Our collective focus is reaching out once again to unite us in thought and bring us together so that mentally we don't have to face our fears and grief by ourselves.  There was a giant crack in the universe on December 14, 2012.   Evil came in through the crack, smashing in the glass and destroying love.   Little people, and loving adults taken in merely minutes and seconds.  Leaving behind a feeling of hopeless helplessness. as we just pushed ourselves though day after day.  The winter ended, the Spring came, the sun brought a beautiful spring and summer and hopelessness had transcended into helping hopefulness as the true human spirit emerged and our community embraced the concept of honoring those lost by being kind, choosing love, and paying it forward.

That is Mac the Monkey, he came to visit

We, my husband and three children,  live but a few miles from Sandy Hook School, where two of my children attended for their elementary years.  We live less than a mile from the home of the young man who went crazy with evil intent and drove to that school never to come out alive.  We see the balloons on street signs, sadly blowing back and forth in the wind reminding us of a special child's birthday.  We drive by the homes of the heart broken families every single day, multiple times, and always think of them.  Always. Every time.  We attend church together, we pray together.  Siblings go to school together.  We go to the Big Y and see one of the Mom's doing her shopping get stopped by a friend, and given a hug.  And we keep going about our daily business.  But sometimes you find yourself reminded, and it is as if we are tied to this place by both our grief and our love for each other.

Our children have been altered forever as they cross the the next channel to the other side of their new grade, new class, new friends, and on to college.  It can be really hard to explain the sick knotted lump we feel each time we drive through the center of  Sandy Hook, because sometimes it just has no descriptive definition using words.  It just is.

Living here, as we have since 1994, has been a blessing.  Two of our three children have had a life enriched with community, great educators, music, theatre,  spiritual love, sports, security, and great friends.  So many happy child hood memories.  And now, their elementary school has become somewhat of an American Horror Story location.  Sucking away those memories and replacing them with visual images of brutality and bullets.  We try to return to the happy memories, but as humans, doing that still breaks our hearts.  They walked those halls, went to those classes, knew that school as their comforting home for all of those days of their childhood.

Living here we try to grab hold of that life line which is hope.  We encourage each other with warmth and kindness.  We turn away respectively and give people their privacy to grieve and to experience what they need to experience as human beings.  We know each and every name of the 26 lives lost that day, and we will never forget those names for the rest of our lives.

For me, living here has been a road of ups and downs.  Prior to 12/14 our neighbor tragically lost their son on 11/8/08,  and grief was already living on Bennetts Bridge Road.  Prior to that, about 28 years ago, my direct neighbor Betty lost her sweet 3 year old daughter Bridget, struck and killed by a car on Bennetts Bridge Road.  Grief already lives here. And as a very active member of the Special Needs community and support groups, I can not even tell you how many children we have had to say goodbye to who have the same condition as Daniel, or who are sick with other conditions.

Living here,  there is life with Daniel.  The one of my two children who never attended Sandy Hook School because he was too medically fragile to be mainstreamed.  Daniel always came with me though, and many families remember me always trying to get Daniel's wheelchair into a classroom where an event was taking place.  Daniel was always so happy to be there.  Sarah and Thomas were always the kid "with the brother in the wheelchair".

In my home, especially in the winter time, I feel a great urge to let melancholy and depression just sink in like a cold avalanche of snow.  And yet, I too grab onto the life line.  Daniel is now 16 years old.  Our life is far from normal. I'm under tremendous pressure every day.  I worry about seizures and respiratory arrest especially when he is at school and I am not there.  Daniel is a magical child, who has captured the hearts of so many Newtown children and adults.



And it spread to the entire world when we had a card shower for him, and he received almost 900 birthday cards, and gifts.   Yes, I wrote 900.

Daniel does not have the same emotional connection to 12/14 that so many other children do.  He doesn't have the cognitive understanding of what happened that day.  He probably remembers how sick he was last December 14th, but really he is just as simple as knowing what makes him happy, and what fascinates him.  Perhaps I underestimate him.  But I like to believe that he is a protected spirit bringing love and light into our world.  He doesn't have to feel many of the complicated emotions and fears that the rest of us do, and that is not a bad thing really.

Growing up in Newtown, CT

Living here in Sandy Hook, CT, tucked away in our house on Bennetts Bridge Road, we are doing what everyone else is doing. Continuing to proceed.  However, we have new priorities in our hearts, or stronger focus in our minds, of being kind to others.  It is critical in the human spirit to stay happy by helping others, by paying it forward.  I believe that God, and the spirit of God, works through us, through our relationship with the living God, to spread His love and good works.  Opening your heart to let kindness in, allows that space and light for God to fill you with his love.   And we can do this, while we grieve.  We can continue on.
Living here in Sandy Hook, CT can feel like an anomoly at times.  Ironically a mix of very different people on very different paths.   Some people are extremely wealthy and still maintaining a life that is self focused, but others have changed and are realizing that their very neighbors may need help.  The stories of kindness on Facebook, are amazing.  People are starting to pay attention to helping their neighbors.  To slowing down and really "seeing" who we live with.


As a Mom, living here, in this house, struggling to stay on top of the needs of a very fragile son, I often wish that there was more I could do for others.  I can hardly pay my mortgage, and Christmas is a time of stress and anxiety.  But 900 birthday cards???   Obviously my son, without even trying, has brought something special to so many people.   I can share his love, I can let people know how much the Special Needs community needs help.  Many families are very proud, but they are struggling.  And if people could just realize the magic, and life changing force that a child like Daniel and so many others have, they would be touched and changed forever.

We are here.  In this house.  With this boy. Who is non verbal. In a wheelchair.  And very fragile. He is finally doing well in a December (the past two have been in the hospital) So if that is the Christmas gift this year, we will take it. It's cold. We can't go out with him. His van doesn't drive well in snow and he can't tolerate the cold temperature.  What can I do?  Just think about the little drummer boy, and it will come to you.

What is it like to live here in Sandy Hook, CT?  Its beautiful.  Simply beautiful.  Evil will never win here.  Love wins.  We really do choose love.  I hope you will too, where ever you live.

Julie Hasselberger

12/12/13

When Looking Away Is The Most Compassionate Thing We Can Do | Cognoscenti

When Looking Away Is The Most Compassionate Thing We Can Do | Cognoscenti

Sleep study sleep deprived need sleep (+playlist)

Daniel having extreme fits when transitioning

THERE IS A DOG IN MY BED MOM

HUMP DAY, DANIEL SAYS WHAT HE THINKS (+playlist)

Daniel turns 16 THE BIG DAY!!

December already? We just had Thanksgiving!!!!

December 2, 2013

A Monday morning it is, gray and dismal I think.  Adding insult to injury the septic truck just came and cleaned out our septic! Now the three words are gray, dismal, and stinky.  But somethings we have to do are simply stinky, but necessary.

Thanksgiving was alot of work for me physically.  I cleaned and moved furniture and sorted and cleaned again.  The fibromyalgia is so bad right now that I could hardly move on Thanksgiving morning.  But I overdosed on Advil and pushed myself.  It was nice to see family, and especially nice for Daniel who can see his family and also be in his home with his nurse.  Daniel is now 16 years old, and yes he had a spectacular birthday!!!  Lots of birthday cards came, and I am STILL working on them, but he has a giant mural of them in his room and some of them will be framed and put into scrap books for him to enjoy.  He loves looking at them.

I ate way too much pie.  Just had to say that.  After everyone had left, I had lots of pie.  I am feeling depressed so having a giant apple pie in my face was not particularly a good idea.  Oh well.

Daniel is doing pretty well. He just is not sleeping through the night.  He is having sleep study this month, to see if there is any apnea going on at night. I suspect, as does his pulmonologist at CCMC that he is having breathing issues at night.

Needless to say, I'm basically exhausted all the time.  When I can get a good solid nap in, I feel somewhat healed from the fatigue.  I did see a rhumatologist recently, but I just don't have the time to follow up on all of the things they want me to do right now.  I'm a pretty sick lady.  Kind of a hot mess really.  But I push myself through it.

One of the things I loved about the cards, was how many were sent from the support group families.  It touched my heart really really deeply.  They know.  They understand.  This journey is not a solo journey.... I think it is like a virtual giant NYC marathon of families all over the world.   We are all at different points in the race, but we are moving along facing very similar challenges.

Daniel is the love of my life.  As are my other children.  But he just has something in those eyes that is so pure, innocent, and true.  He brings out the best in me, that's for sure.

So where are we today, on December 2, 2013?  Daniel is at school with his nurse, Marques.  Thomas is at school at Newtown Middle School, he is in 7th grade, he's my little Baritone sax playing prodigy.  Sarah is back to college after 5 days home for the Thanksgiving break. She will have finals soon, and its amazing how fast the semester went by.  Henry is napping in his crate.  The cats are sleeping.  John is at work, he works at Hologic in Danbury, (breast imaging equipment people).  And Julie? Well....  I am sitting at my desk, in the quiet, writing.  By my side is an enormous PILE of bills, cards to send, and a list of people I have to call. Bloodwork, endocrine, flu shot, follow ups....  I am completely overwhelmed with how much everything costs, and simply trying to juggle it all.

I'm shivering.  I don't know why because it's warm in here.  It's all consuming, and quite depressing because I never get to the finish line of anything.  In front of me, in a file holder is a folder that says, "Nursing College", my biggest dream is to go back to school and get my BSN.  However, it is the farthest dream from reality right now.  I have too many issues in my house to contend with.

So carry on through this Monday morning, as gray and dismal as it is.  I wish I had the stamina to search Cyber Monday sales.  Christmas will just have to wait..

I'm sure I gained weight over Thanksgiving, when you are depressed, stressed, and have to walk on eggshells all the time, food becomes an obsession.  Yes, I need therapy with this obsession.  I wish I could get like, Oprah Winfrey, or Dr. Phil, or some famous person to scoop me up, put me on TV with all of my life story, and fix me.   I would love that.

Instead, I am going to spend time doing what is the best thing.  Praying.  Praying. Praying.  Time to go.  I need to upload videos to my Youtube channel, Julie Hasselberger.

Have a wonderful day friends.  Please do something kind for someone else today.  Acts of kindness are necessary food for the soul.

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.

Wednesday morning, staring spells, the Hallway of doors and keys to resolution

Wednesday 8:01AM     November 6, 2013

Today started out with me so grateful to have Thomas offer to take the puppy outside.  I woke up, said a prayer, found a nice video prayer on YouTube.  Meditated for a few minutes.  Took my daily pile of medications and went to get some coffee.  Typically in the morning, I get up quickly and take the puppy outside right away, then I come in, feed the dog and make sure Thomas is all set.  Thomas is pretty independent.

Before I even take the dog out, I always check on Daniel and change his diaper because 99% of the time its a badly needed situation.  Today included.  After Thomas gets himself on the bus about 6:40am I begin getting Daniel ready for school.  I get him dressed, lift him into his chair and if the nurse isn't there yet I will start the meds and prepare the feeding pump for the day.

Today, Daniel was having one of his "bad" mornings where he cries alot and just seems very uncomfortable. The dog, Henry, was wandering the house but I couldn't get him because Daniel was so upset.  Then I heard screaming of my name coming from upstairs. I will refrain from the obscenities but the dog had a poop accident on the floor next to Daddy's bed.  Of course I was screamed at, did you feed him, did you take him out, do we have any carpet shampoo, get it for me now,  you know.  It's stressful I guess when the dog poops while you are trying to get dressed for work.  But really, why do I have to be the one at fault for every single mishap.

I decided that I didn't care.  And kept tending to Daniel who was acting kind of weird.  And by that time Henry was sitting at my feet looking kind of sheepish.  My gut tells me that when Thomas took Henry out, Henry did not fully do his "business".  He probably rang the "bells" on the door but no one was around to hear it. It's not his fault.  He is 5 months old.

My day flipped upside down in the blink of a flash and now I've got that sad sick feeling in my stomach again.  That "no matter what I do, you will never stop the mean nasty tone and lack of compassion for what you do to me" feeling.   And yet, today I have many things to do, including some work for Allstate and getting groceries.  That's a laugh.

Daniel was looking a bit bizarre once I wheeled him into the kitchen, just a funny look on his face so I took a video of him.  At the end of the video he fell into a short staring seizure, or spell, whatever you call it.  I wasn't comfortable sending him to school today.  It's good to have video coverage because you can send it off to the Neurologist.

Daniel.  I have to get back into the mood I was in, when I first opened my eyes today.  As always I check my stupid bank account, its an obsession of fear.  AND then I prayed via a prayer I found.  Through writing, as I am doing now, I can journey my way back to peace and out of the sad sick feeling that I have.  I will take the goodness of the universe and place it in my hands, hold it to my heart and let it warm me and fill  my mind with positive thoughts.  Positive focus.  Positive healing.  We all have a choice.  Choose Happy?  Choose sad??  Choose ANGRY??  Choose complacent?  Whatever.  As human beings we are actually strong enough to make the choice.

It's not designed to be easy.  Sometimes you even need to get some help to "choose" your way, to a better place.  But denial locks the door to choice.  Seals the deal.  Cuts the life line.

I have to call doctors today, schedule things like a sleep study for Daniel and a review of the EEG that we had done recently.  Positive results will come from my efforts.  I have to do this.  I have to push away the mean things, the hurtful things, the anger, the sarcasm, the lack of money, the lack of resources, the lack of independence, and do ALL that I can, to make the light shine bright on the things I have control over.  And also turn on the light to the hallway of doors where the keys to resolution can open them up, only if, and I mean ONLY if you have a positive heart and a spirit of faith and optimism.  I don't thing negativity ever brings anyone closer to a better life.   So, that being said, I'm grateful that I am a positive person.

Shine bright my light Lord.  Please keep my spirit and my faith strong.  I am only a 47 year old woman.  Not anything more.  It's your love that makes me strong and special.

Sarah's dorm room, Henry Daniel and I

http://www.youtube.com/v/z6B8fqftMM8?autohide=1&version=3&attribution_tag=Fi-s5fqVtlGnyFbmL86-1g&feature=share&autoplay=1&autohide=1&showinfo=1

Russell Brand NEWSNIGHT Paxman vs Brand Full Interview

EEG, a really bad day, and COLLEGE VISIT!!!!

Today, as I sit here freezing because my heat doesn't work in my office at home, I am reflecting on the things in my life that suck away joy, and revitalize joy.  It has been a hard Fall financially. It always seems to be. I think there is just so much that piles up and needs to be done come September/October/November and I find myself juggling, struggling, and under great stress.   That being said, under the greatest of stress and depression comes a life line.

I must say, when I hang my head in tears and then remember to pray to Jesus to hold me up.  That is when I begin to turn around and focus.  Sometimes its an immediate mood change.  Sometimes its a heartwarming email or message from someone who understands and wants to encourage me.  Sometimes its just me actually seeing how beautiful my son is and how lucky I am to be his Mom. 

Last week, Daniel went in to see the Neurologist for a sleep deprived EEG.  He has not been sleeping very well, and I am not sure if there is a change in seizure activity but I suspect it based on his behavior when he wakes at night.  It's a scary business, dealing with an epileptic child.  I am waiting for the doctor to get back to me.

But, the best event of recent was Saturday, October 26, 2013 when Daniel, Henry, and I journeyed off to Wagner College to visit Sarah.  Daniel had never been to her school, and she really missed him and wanted to see him.  We put Henry in the vest, and he got to ride around on Daniel's lap like the Man of Honor in a parade.  We are quite a spectacle, me, Daniel and Henry.  People were just stopping and staring, but I didn't care.  Having a service dog is a beautiful thing, and with his vest on, Henry goes everywhere....  he even went to brunch.  Sarah was not really interested in the school scheduled activities for parents, so we decided to do our own thing.  We found the Staten Island Mall and did things that we just enjoy doing.  Daniel was thrilled to be in a Mall...because he loves Malls.  Anyhow, it was a great day with my daughter.  As I drove  home that evening something really cool happened.  

I was driving along, bored and kind of sad as I hit traffic in Brooklyn.  I scanned the radio and loud and clear was this channel, called "K-LOVE"  www.klove.com  It is a contemporary Christian Music station.  The first song I heard was called "Forgiveness" by Michael West.   I felt very lifted.  And that radio station, which has never come in clear on my radio stayed loud, crystal clear, and perfect from Brooklyn, all the way to Sandy Hook.   It was such an uplifting time because 1) I love Christian contemporary music and 2) the songs that came on....were all so pertinent to what I needed to hear.

The point? you ask...  Keep your heart open.  Keep your faith.  God will speak in many ways to you if you listen and look.    Here are the lyrics from that song "Forgiveness" by Michael West.

It's the hardest thing to give away

And the last thing on your mind today

It always goes to those that don't deserve

It's the opposite of how you feel

When the pain they caused is just to real

It takes everyting you have just to say the word....

Forgiveness

Forgiveness

It flies in the face of all your pride

It moves away the mad inside

It's always anger's own worst enemy

Even when the jury and the judge 

Say you gotta right to hold a grudge

It's the whisper in your ear saying "Set 

it Free"

Forgiveness, Forgiveness

Forgiveness, forgiveness

Show me how to love the unlovable

show me how to reach the unreachable

Help me now to do the impossible

Forgiveness, forgiveness

Help me now to do the impossible

Forgiveness, forgiveness

It'll clear the bitterness away

It can even set a prisoner free

There is no end to what it's power can do

So, let it go and be amazed

By what you see through eyes of grace

The prisoner that it really frees, is you

Forgiveness, Forgiveness

Forgiveness, forgiveness

Show me how to love the unlovable

Show me how to reach the unreachable

Help me now to do the impossible

Forgiveness

I want to finally set it free

So show me how to see what Your mercy 

sees

Forgiveness, Forgiveness

The Reality of being me October 20, 2013 (+playlist)

October 19, 2013 Leaves, haircut and Newtown Day

Saturday October 19, 2013   Sometimes even the most typical of days can reveal a few little miracles, and a few little not so miracles.  The orange socks are in honor of a beloved coach and father, Chris Stenz who passed away a couple of years ago.  Treadwell park is now surrounded by 26 beautiful trees that were planted after 12/14.  Daniel sat for the entire football game, happily.  Henry is so happy all the time. The weather this year has been nothing short of fabulous. Perfect Fall. Perfect October weather.  

Gayle is an angel, she cuts Daniel's hair as a kind gesture and way of helping me out.  I am very grateful and would go to her either way, because she has been cutting his hair for years.  I realize at the football games how many REALLY nice people we have in our town.  I'm often an isolated person, which contradicts my social nature, so I love being out with people.  John is completely the opposite.  There are very few people he will be bothered with, but he enjoys talking to the kids.

The amount of kids who know Daniel makes me feel so warm inside.  Like Max, for example, the brother of one of our football guys, he seeks Daniel out all the time and spends time actually talking TO Daniel with a meaningful heart.  Those little miracles, special little moments, are always happening.  And they are always happening to everyone, all around us.  

I video tape, and take pictures, and blog because I am also a realist and I know that some day, I will value the treasures I have shared.  Daniel has a magic in his soul that simply can't be missed, IF you stop to see it.  And he has the cutest little pup on the planet, so that helps too.

October 18 2013, My Mom's birthday and a lunar eclipse and Henry the Dog and Daniel

Today is Friday, October 18, 2013.  A very beautiful October Fall day in Sandy Hook, CT.   I'm kind of a hot mess, but a happy hot mess, I guess.  Feeling really bad physically and really do need to get to see the rhumatologist but I keep forgetting to call, and now its Friday. OH WELL

The Fall weekends are typically full of football and "doing the leaves" because we have a zillion trillion leaves.
Daniel enjoys watching the leaves fly around when John uses the blower, and Henry has discovered his joy while jumping and frolicking into the leaves.  I am trying to train the pup to collect firewood, but so far he just chews the sticks.  He still needs alot of training, lol.

This afternoon I took Henry over to STARR, his classroom and when I walked in Daniel had been laying down sleeping.  The girls were all singing and having a Friday moment to the soundtrack of Jersey Girls, and I tell you, it was so nice to walk into such happiness.  It is now several hours later, and, I can not stop belting out... "I LOVE YOU BAAABY, AND IF ITS QUITE ALRIGHT..nah nah nah BAABY" etc etc "your just too good to be true, can't take my eyes off of you"   Thanks alot guys.

Please feel free to follow my video channel on You Tube, as I am working on my vlogging skills.  It's wonderful to watch the progression of things, and wonderful to hear myself whine about how hard life is.  lol.  I am also trying to do more taping and find more places to do submissions to, because who knows maybe someone like HGTV will pick me for a home show.  I love that.  We were once on the John Walsh talk show and it was so much fun.  I need to have that VCR tape converted so I can watch that show again.  I would love to be on TV like that again.  That's just me.  I think John Walsh only had a talk show for a couple of seasons but he best known for Americas Most wanted.  He was such a great guy in person.

I was told that there is a lunar eclipse tonight, so I will try to get some footage of that.   Unless it takes too long. But still,  pretty cool when that happens.

 Well,  I'm chilled and tired, and I have NO DINNER prepared for certain hungry people who will be expecting me to provide food.  But instead of providing said food, I am typing away on my blog talking to you people.  I guess I am what you would call an anomoly. I do not fit into the typical mold that most Mom's do.  I hate cooking and I would rather just eat soup and go to bed.  Mostly because even as I write this I can hear Daniel downstairs crying.  So if my writing becomes random its because my brain begins randomly switching channels to worry channel, hungry channel, eclipse channel, and basically I am just a hot mess.

Poems today, just because I am a person of written words to ease my fears

Monday morning Mother's blues

Do you know how hard I try each day

To see light and find my way

Its clear to me its an awful thing

To never hear this child sing

I push the chair along the walk

Its quiet since he cannot talk

He goes to school inside his bus

Alone not like the rest of us

With nurse, and aid, and special lift

The few who see his special gift

He is gone and then I face my home

Its cold and I feel all alone

The stress of never having enough

It's exhausting to always have it so tough

And when the mail comes here each day

I wish that it would go away

I know it adds to the big giant hole

Which hurts my heart deep into my soul

I am tired but trying to make it all go

and Negative factors keep pushing me low

Why is harder for those have less

Less based on sickness, disability, stress

Today I have zero, quite honestly none

Then I pray and I notice that HEY, there's the sun

Pick up the phone, call the doctor, begin

The daily ordeal I am trying to win

He needs my strength, needs my heart, needs my love

There is no one out there, except God up above

Who can help get us through this merciless storm

and Keep oil coming, keep us all warm

Remember please if I have reached out to you

Its because I love deeply and don't know what to do

I have three special children deserving of life

But one who is faced with such physical strife

Think of the mothers, like me, all alone

Sipping coffee and fearing to answer that phone

Waiting to hear the sound of his bus

So he will be home with the rest of us

And when he is here, in my arms, in my sight

I remember full on why I always must fight.

Julie Hasselberger

October 16, 2013

On a particularly hard morning.  

********************************************************************************

excerpt from "Let me tell you about special mothers"

Let me tell you about special mothers

For they are mothers like no others

While most boys are kicking footballs

Their sons are watching through gaps in brick walls

They sit in silence watching this

Which is the opposite of bliss

Yet still they have to see all this.

                       

But the thing about these special mothers

That really makes them like no others

Is that while most parents listen for a lie

These mothers are watching… their children die

They sit in silence watching this

Which is the opposite of bliss

Yet still, they have to see all this.

************************************************************************

Traffic Light

© Linda Grantham

This traffic light inside my head
Is always green and never red.
My thoughts, my dreams and all my fears
They all speed past my listening ears.

I close my eyes to block it out
But inside my head they rush about.
I take a breath to slow it down
But upon my face appears a frown.

My heart beats fast
But my breathing slows.
I breath in life
Then out it goes.

My bodies numb
Yet I feel my tears.
I've lost count of the days
The months and the years.

This traffic light 
Inside my head.....
I'm scared of the day 
When it turns red.

Come Touch His Cheek

© Gary Shulman

This child of mine you stare at so,
Please come closer so you will know
Just who my child is and what I see
when those sweet eyes stare back at me
I see no limits to my child’s life
Although I know
It will be filled with strife,
I’m hoping that doors will open each day
I’m praying that kindness
will come his way
You look frightened?
You tremble with fear?
Come, come closer
touch him my dear
Touch his cheek so soft
so sweet
Be one of those people
he needs to meet
Someone who will look
and hopefully see
The skill, the talent
The ability
Please come closer
You don’t have to speak
Come a little closer
Just touch his cheek
And when you do 
you will see
this sweet, sweet child
is no different 
than you or me