Scary scene on our way to the Mall

Bus driver dog treats

Dog buries head in snow

A special song calmed a meltdown

Henry gets a new haircut

worrying about Daniels future

Julie and the ducks

After the snow storm

Why I Vlog

"Hi julie my name is jennifer. I live in san diego ca. I just wanted to let you know that I sub .To your channel and I enjoy your videos. some people just don't understand. Also i am going to school to learn how to care for people like Daniel. At one point in my life i was like i don't want to have to finish my education. Than i found your blog and channel on YouTube and I was like yes i want to go to school to finish my degree in helping people who are like Daniel i still have a long way to go but i know this what I want. I look forward to hopefully meeting you and your family and also i watch all your videos"

hi nice to meet you and your family my name is Chris i'm 22 and I have cerebral palsy I came across your channel a few days ago and it has turned into one of my favorites keep up the good work very entertaining hope to hear back from you

Depression, when sad doesn't need a reason

One day you sit in your house and feel like there are a hundred things you should do, and people you should talk to, but you are frozen.  With no particular reason, the world just feels empty and flat.  Its hard to motivate yourself to do anything.  So you try to sleep.  Then the pretending kicks in. Pretend to smile.  Pretend to be busy.  Pretend to be "OK".  But you are sad.  Sometimes.

The medications help most days. But not all days.  Its just not that simple.  Most people say they understand but they really don't.  They expect that you should be behaving normally and being cheerful if you don't have a reason to be sad.   But even with reasons to be sad, those reasons are not necessarily why a person can feel like they are in a thick cloud of goo.  Just stuck.

When your brain doesn't have the right chemical balance, your perception of life is a direction reflection of what your brain is doing, or not doing.  Depression is not a choice.  It is an illness.  It makes you feel like a failure when you realize you have forgotten to do so many things of importance.

And then you reach hard for that ability you have worked so hard on. To meditate and be in the present moment.  To find joy and love all around you. To be grateful.  Its all work, but one slight change in perception can truly make a difference in your day.

I imagine everyone who suffers from chronic depression has people in their life who simply don't understand, or believe that it is even a "thing".  They consider you lazy, or "out of it", and tell you to "cheer up",  and "take a pill".   So you go to your therapy session, and after years of therapy you sit down, take a deep breath and wait for whatever is ready in your head, to just expel itself.

It does not mean you don't care about people.  It does not mean you don't love your family.  It does not mean you are incapable of living a happy functional life.  Because with treatment, and care, you can.  But it does mean that there will be rough patches.  And it does mean that there will set backs and things that just derail you.

The battle with choosing happiness over darkness is a daily game for someone who is depressed.  When you can win most days, you have developed great skills, and the medicine is helping.  And maybe you will be able to go for a walk that day, and actually get through your piles and piles and piles of insurance paperwork.  Feeling accomplished.

Other days, you have a crazy strong desire to be creative, to paint, or play the piano, to write poems or songs, to experiment with make up, to color in a coloring book, to buy a guitar even though you don't know how to play but want to.  Reaching out of your funk to have faith in "what can be"  Just allowing "whatever" to guide you.  Its all a possibility.

In some ways, depression is a way of slowing you down.  Because life can flitter by, just like that, and all you have done is paid bills, cleaned your house, done your work, and gone to the doctors. Day after day.  And you have not helped anyone, or laughed much, or created anything, or made a change in the world.   Depression requires that to make a happiness choice, you have to push through the walls of that "BOX" that society puts us in.    For me, I did that on the day Daniel was diagnosed as completely disabled.  My BOX blew up actually.   So I am making my way.

I never mean to forget things.  I love so deeply and care so much, but sometimes I forget to tell you.  I want to be better at that.  Sometimes depressed people hurt and anger the ones they love the most.  And they have such guilt about it.  Sometimes depressed people seem like the masses...  moving along like lemmings headed toward a cliff.  But they step out and turn around, and go back home.  They put on the TV and watch a Nicholas Sparks movie, and cry for 2 hours when they should be productive.   Altered reality I guess.  But it doesn't mean they are crazy.  They are just coping.

Some people in my own life do not know the extent of my depression, nor do I tell them.  Sometimes I talk about it.  But mostly, now, I deal with it.  My spouse will not come to my counseling, despite years of almost begging, because he could really help in my treatment.  But I think he's more depressed than I am, and afraid to face his own reality.   And he thinks its a stigma and that medication is a weakness.   So his anger stays, and my depression heads to the doctor, and the therapist.   Everyone has their own coping choices.

On my journey, I choose to find joy.  On the worst of days, I force myself to be grateful and joyful for a God who loves me, and a family that adores me.  There is joy everywhere.  With each little moment of joy, I find a peace that is warm, because its like following a path.  Or follwing little lights in the forest, they lead you to a new perception and a new way of looking at things.  And that leads you to more joy.  If you choose to follow, you are choosing to move towards light and happiness.

There are negatives and positives in life.  Sometimes, the things we think are the most positive, are actually toxic and dangerous for our hearts.  Sometimes things that seem hopeless and negative, are really opportunities to grow, to change, to learn, to feel joy, and to connect with humanity.

Finding joy in the journey.  Every day.  And sharing it. With you.

Baclofen Pump Refill Day

John makes meatballs

Hi Deer

Taking Turns snuggling Daniel

Henry gets a new style

An Important Question

How to share cookies

Our NOT healthy New Years lunch!

How we spent New Years Eve

A present comes late

Daniel goes to a Christmas Party

Something happened on facebook today

Shouting out thanks, for special gifts received!

Weekend part two, shopping, dog park, silliness

The Tree is Standing and it is huge

warning 18 year old with Whooping cough

Getting discharged, time to go home

Improvising Thanksgiving and having fun with hospital masks

I told them it was Whooping Cough!!!!!!

Urgent Care for two please

Daniel's "sick" happy birthday

Great job sitting Daniel

Keep your mind off your pain

Welcome to Our Channel

I have Shingles, week in review

National Championship Fun and exciting results!!!

Halloween Dog Party and Exciting Band Competition

Daniels story Part 2 the later years

lets snuggle Mom

Bed

How a depressed person thinks:

Lately things have been rough for me. In my head. In my mind. When I have money stress it pushes me down a dark tube into depression. Because I can't do regular jobs like most people. Because my disabled child may be fine today, nut not tomorrow. Because I had a job but now they can't pay me and I'm behind. A lot.  I am helping Sarah go to Italy for school. No matter what it takes. No matter what else has to suffer. She gets a class credit for going and she is a brilliant kid who deserves it.   So I will somehow make the payment.  But it's the rest of life that has made me want to retreat to my bed.

Everyday when the kids are off to school and John is off to work, I have coffee and it's lonely and dark in the house. Except for my animals. All I want to do is go back to bed. Today, I did. I would still be there if I didn't have to pick up Thomas. 

I feel like my situation is too hard for me to manage. I can't find my superwoman cape anywhere. Maybe there is crypto it's under my house. But all I want to do is sleep. I can't go shopping (no money) I should be going to probate court for Daniel, cleaning, cooking, scheduling appointments, calling equipment suppliers, exercising, looking for a job, being.happy jovial person.  There are so many "should be doing things". And John adds to my list, you can fold the towels today. Ok. I brought them up from the dryer.  But I don't feel like folding. I don't feel like eating. Actually I had an apple today and it's 2:38pm. And I am not hingry at all.  Considering I'm a fat person this is highly unusual. 

My bed has lots of pillows. And soft lights above the headboard. I can block out everybody in my bed. Henry stays with me and snuggles. I should be put walking.  Today it's raining so I guess that wouldn't have happened.

I should be praying for help or calling a doctor about my psychosis. But I'm just numb.   I'm tired of trying to do the money and th money never being there. I feel hopeless because I worked for a month and didn't get paid. The bank says I am overdrawn. I don't have a debit card.   I'll never go into the branch again. They were so rude to me last week. 

Nothing is perfect here. This life doesn't fit into the square Holes of regular normal people.  Daniels mic key button clogged this morning. I cleared it with a tooth pick. 

I can't remember the last time I had my hair colored. It looks awful. Really awful. I think it's been 3 days since I showered. I will shower later because I feel gross. I am gross.  My job told me not to come to work anymore right now. Money is tight. It's tight all over I guess.  Except for the Mom I am looking at in the parking lot of my sons school in her Giant fancy Lexus sport utility. Chatting on her phone. Her nails are amazing and she has gorgeous hair. I wonder who she is talking to becaus she looks happy.  I'm a grunge pit.  My pants have bleach stains and my sweatshirt is torn. I used to like to dress now.  Now I just wear old clothes. 

My bed. If I went back there right now I would fall asleep instantly. It's all I really feel like doing. It's pouring rain outside. 

Thomas is helping the middle school band.  Sarah texted me that she got an interview with CBS.  

There are so many things I should be doing.  Join wants me to apply for full time HR jobs. I don't see how that could work. But he's adamant that it should go back to how it was before. Back before Daniel was medically fragile and I made a lot of money. But it's different now.  The stress is greater. 

When I go out I pretend. Smile. Look happy.   I have $10. Extra bucks. I should go buy some chocolate. And go home and go back to bed. My favorite time of the day is bed time. I love my bed. And al my pillows. I feel loved and safe there.  I'm waiting in my car. For Thomas. It's raining. I just want to close my eyes and sleep. Right here. In this car.  But I would prefer my bed. 

Daniels story Part One

Respect the toad, day in the life Sunday

Henry loves the dog park

I love you Daniel

Emotional day in my life

Rehearsal and a snuggly cat

Back to campus after Fall break, the NYC drive

Furry Animal love

Daniel in Special Physical Therapy session

The worst side of the house

surprise gift in the PO Box and a grumpy hubby

surprise gift in the PO Box and a grumpy hubby

Am I wrong to think the way I do?

I am a 49 year old Mother and wife.  When I look at my kids I see some pretty amazing talent and ability.  What is life really? Too short not have a grateful heart every day.  Too short to spend days obsessing over negative things that will never do anything but harm your health.

Is it a fault that I like to see beautiful things, even in places where beauty is questionable to some.  Is it wrong to believe that karma does exist and that finding a slip of paper on the side of a country road that says JOY in hand written blue ink is NOT an accident?

Life is a tumultous road of tedious stops and starts.  Chores and maintenance, money and medical.  Things that are "the right things" or things that are "the best things" or simply not knowing what to do.

I am like a little kid under a gigantic pile of papers trying to unstick myself from the mess.  Sit down.  Get yourself together Julie.  Make a list and organize yourself.  PLAN.  How can you not have a plan.

The zig and zag of relying on other people to move you along the road of life is a precursor for high blood pressure.  How are you supposed to work and have sanity and job security when you almost without a drop of doubt will have to leave or not even come in at least twice a week.  And then there are the hospital stays...don't get me started.

The world and status quo of the financial instituations in place for individuals to live the the American dream does not apply to famlies with a child born with a severe disabilty.

Money is the one thing in my life that makes my heart beat too fast, makes me panic and worry, forces me into corners and gets me so afraid.  When the bank account gets low, I am literally terrified at the thought.   Because there is never enough of it.  And all I really want to do when I'm stuck in those dark logistical practical places, is run barefoot along a beach or stick my hands into finger paint and just go bonkers on a piece of paper.

I don't know all of the politics on TV.  I don't know what is happening with the financial markets.  I don't know the intricacies of foreign affairs.  But I do know that I know my son's medical needs like the freckle pattern on the back sides of my hands.   It is virtually impossible to engage in the sophisticated adult world when you are doing breathing treatments and changing the diapers of an 18 year old.

Just wanting to let go and experience the love that is my son, while he is here.  And yet the phone never stops ringing, and the mail is stacked with "issue" containing envelopes.

How is life supposed to be?  Sometimes I feel like I'm guilty if I talk about choosing happiness and light.  Sometimes I feel like people close to us want to help, but not get involved on a personal connectivity level.   What I need most is love and compassion.  But money is a required part of that.  or not.  I don't know.

I often feel an identity crisis.  The way I removed myself from music. The way I isolate myself from the social life I once adored.  The way I ignore the health of my own body becasue I spent tireless hours caring for my children.

As I write my eyes are closing into what feels like oncoming sleep.  I don't know what tomorrow will bring.

All I know is that when I'm tired I should sleep.

Remember when we met Carl Banks? and Shout Out to Liz

something special happened

More sickness, hanging tough

Fitting into the realm of "normal"

Fitting into the realm of "normal"

Fitting into the realm of "normal"

Fitting into the realm of "normal"

Labor day parade and very loud crickets

Daniel likes Katy Perry

Special deliveries and wonderful surprises

Special deliveries and wonderful surprises

calming down

Sick

Therapy was emotional, and we have BATS

Come on Fellas show us your bacon

Isolation

Isolation

People exist around you.  Things are happening all of the time. But why do you feel alone?

In groups you pull yourself apart, feeling like you don't fit in.  Having that awkward silence.

In places where people are happy you find yourself wanting to run away, and yet at the same time you don't WANT to be alone, really..

Watching their "normal" kids playing and demonstrating second by second the normal human motor skills that people don't even think about.  Until their child doesn't have them.

Suppressing that self-pity day after day because it isn't about "you" really.  Feeling tired and lost, and then even more tired.  Losing the social skills that used to make you vibrant and shiny.

Developing new ways of life when you are unable to work in the career you spend 8 years going to college for.  Battling insurance companies, changing diapers (LARGE diapers), whiping drool, ordering supplies, cleaning up g tube leaks,  taking vital signs, calling doctors, watching for seizures, and knowing when a vest treatment is needed.

Knowing what it is like to sleep in a hospital for weeks at a time.  The mind becoming accustomed and comfortable.

Balancing the schedule of SO MANY doctors appointments, therapy appointments, and school. Learning to always plan on things being cancelled, rescheduled, changed every day.  All the time. No consistency and no planning because it almost never works out the way the plan goes.

Digging vigorously into social media for friends.  Because you can't go out, and even if you do.  It's the old awkward, not knowing what to say and worrying about the child at home.  9 times out of 10 something goes wrong at home.

Loving your child so much, as you watch life and milestones that everyone elses children get, just pass him by like a breeze at the shore.  Walking, talking, playing, writing, singing, dancing, having friends, graduating, going to college, etc etc etc.   Your child lives with you.  And your reality is suddenly, he is nearly 18 and you have to  do all kinds of legal crap to assign yourself his guardian. As ridiculous as it sounds, its the law.  And its money you don't have. Again.

The pressure of not knowing what to do.  Having to learn, every day, what to do to keep him healthy, happy, engaged.  It's your responsibility to provide him with all of his life's activities.  Thats a big responsibility.

Money and finances.  Waiting patiently (7 months???) and counting.  For the bank to modify your mortgage.  Every week they tell you, we have alot of modifications and we are behind.  And you wait, and worry.  They said months ago they could help bring the payments down.  Now they just leave you hanging on a limb.  And you just want to care for your family.  You just want to be a responsible person.

The isolation from all things normal.  The restrictive world that having a wheelchair causes.  The expensive crazy cost of all things "special needs", marked up.  Fighting the insurance company when they decline paying for anything.

Not sleeping.  Over eating.  Turning to sweets for comfort. Taking too many naps.

Trying to find yourself, giving up.  They trying agian. Then putting "you" on hold.  Confusion, loss of self, and disruptive sleep.  Nightmares.

They tell you so many things.  But they can go home to their houses, and not have to live with the enormity of it all.  Secretly they are glad they are not you.   You feel special, because you have this beautiful child, full of wonder, and just an amazement every moment.  And then you feel guilty for the self pity.  Feeling awkward when people help you, and then feeling like you just have to ask for help to survive.

Its a blend of loving yourself, and not knowing yourself.  Wondering what the future will hold for your family and your special needs child as everyone crosses over into adulthood.  It was easier with little children.  Getting older means more.  After 21 he has no more school, so then what are you going to do.  Not knowing.  Because you live in the moment.

Giving your other children as much of you as you can.  Realizing that they too, have isolation tendencies, and extreme creative talents.  Special needs siblings with an enormous compassion and the ability to see the world from both perspectives.  Keeping your marriage together when at times you feel like you just want to run.

Being a good person.  Praying often.  Wanting to go to church but not able to sleep enough to get up. Looking in the mirror every morning, wondering what the day will look like.  Wanting to sit on a bench and just write stories and poems.  Wanting to garden.  Wanting to play your music. Wanting to get to YOGA class.  But passing up on all of your favorite things.  Because you are a busy Mom.

There is an isolation that happens when your child isn't like the rest.  It is neither good nor bad. It just is.  It's hard to explain. The feeling.  The way it feels to push that wheelchair everywhere.  But it is who you are in this life.   Only one life.  Passing by quickly as your age escalates.

You are only given what you can handle.  You are strong.  You are special. You are amazing.  But really you are just you, who was forced due to circumstances to alter your reality and have faith.  Faith and hope keep your head held high on the journey.  To the unknown.

Julie Hasselberger
August 1, 2015

Silly grocery shopping and a trip to Neurology

The day the seizures came back

I am really feeling beaten down, but not giving up.  I keep praying that somehow, someway, we will get ahead.  I have to take care of this kid.  I did a survey, and most people said that they would need between $100,000 to $200,000 to change their lives.   For me, $52,000 would put me in the position to fix up the house, sell it, downsize, put money in the bank, stay with Daniel and concentrate on his needs, get my degree finished and move south in 4 years.



So I don't know how I am even going to get myself through today, never mind will $52,000 into my bank.  But I do not want anything fancy, I just want a life that isn't going to kill me with a heart attack.



I just have to keep hope in love and stay at peace in my head.   Today, this morning, I woke up and the car Sarah uses had a flat tire.  Seriously?  I just had to laugh.



Life is insane.   I am praying that our you tube channel will spread and grow, because ultimately it will help earn money, as it works.  



One other interesting thing, I heard from an old friend, Kim, whose son Collin used to go to school with Daniel.  She went through the same ordeal with the insurance cancelling Collin's services, and her story is in the paper today.



It is ridiculous...  the way our kids are treated, its as if they just don't matter to the world.  Makes keeping hope even more important friends.



IF I LOSE HOPE WHAT ELSE DO I HAVE???     My John has been incredible lately, as have my children.  We wrap around eachother like a warm blanket because at the end of the day, all that matters is love.

Not a very welcome home, 2 broken down cars

Going Home Day, Travelling with the family

Barefoot Beach and a really nice day

The best time of my year, is when I can be at the beach in Florida.  Letting all of the stress and pressure go...  just for a brief spell...   It comes back 10 fold, especially this year, when we returned home.  Ugh.  Our lift van transmission went!!!

Daniels day at the beach

"What do you want to do today?" dilemna on vacation

Sarah arrives in Florida, our Naples adventure week 2

Please come to You Tube and subscribe to watch all of my videos



Life told thru the lense and from the heart.

Vacation is ending

I am laying in the semi darkness as the sun will be coming up soon. It's July 4 2015.  Tomorrow we head back home to CT from Florida and it's always a tough thing for me.  I do miss my Henry very much, it's been so hard not to let it make me depressed. So that will be nice.  But it's Connecticut in general that makes me weary.  The house I can't afford to repair and the cars too. Too much to clean. Working hard all the time and fighting the ridiculous depression. 

The culture, people, and climate down here changes me and after 10 plus years of staying here I know I am done with the North. 

But regardless of what my heart says or how well Daniel and I both do physically I am aware that vacation ends and there will be that massive pile of mail and that long long "to do" list when we get back.  

Thoughts on June 20, 2015

It is Saturday night, and I've been scrambling all day to get packed and ready to go.  Up until yesterday I wasn't sure if our vacation was going to happen.  And I guess that is pretty typical of how life with a disabled and special needs child is.

Daniel had surgery to have a Baclofen Pump placed inside of him, on June 4, 2015.  This is a procedure that helps to reduce spasticity in the muscles.  Daniel's spasticity issues were getting so intense that I wasn't sure if I could manage him on a plane, etc.  It was time to move away from the "oral" baclofen medicine, and to what they call "intrathecal Baclofen" .  so off to the hospital we went for the surgery.

Everything went well, and aside from a couple of complications, it seems to be working really well.

This morning I had some sort of a mental meltdown. I'm not sure what it was really.  But as I sat staring out into my backyard I felt tears streaming down my face.  This is journey is a tough one, and as optimistic and positive I try to be, and try to move myself towards being, sometimes it still just downright sucks.

The State of CT Husky medicaid people are trying to take all of Daniel's skilled nursing care away.   It's complicated, but essentially some person at a desk somewhere in Hartford has looked at Daniel's file and decided he does not qualify and is not medically qualified for on going nursing intervention through out his day.  They are proposing to end it on June 27, 2015.   Daniel DOES received nursing intervention all day long.   They are making me jump through hoops like a monkey.

So here I lay, falling asleep while I write.  Wanting so badly to spill out some devine words of wisdom, but I can just say that we are on schedule for vacation.  I'm really really sad to be leaving my Henry behind, but I think a break will do me great.

Great.  as I wait to find out our fate with the nursing care.

I am also very thrilled that my You Tube channel has hit over 1000 subscribers.  I hope that if you are reading this, you are also a subscriber.  I think its weird, but I honestly have NO idea if any of my family members (except my mom and sister) actually follow us there.  Most of the comments, and interactions are from the You Tube community.  Perhaps people are just still so new to the concept of vlogging.  I'm not sure.

Time to get some sleep.  I have to wake up at 3am.  Yes I said 3 am.

Olease keep coming back. Life is great.

Julie Hasselberger  June 20, 2015
.

14 HOURS IN THE ER, READMITTED, MUSIC AND THERAPY

Baclofen Pump Surgery Day June 4, 2015

The day before Daniel's surgery June 3, 2015

The day before Daniel's surgery June 3, 2015

Challenges and Blessings of having a special needs child

Special Day in Lower Manhattan

I am Julie Hasselberger.

They asked me for a "bio" and this is what I wrote.  Today is Thursday, May 21, 2015  

I am Julie Hasselberger. Mom of three children living in Sandy Hook, CT. I have a Bachelors degree in political science and an MBA with a concentration in Human Resource Management. In 2003 I left the full time corporate career world because my severely disabled child needed my attention, advocacy and care full time. I am outgoing, I love people, love music, and love God. I am a Christian and I believe that we have Hope through our saviour. Needless to say, my life is a daily struggle full of challenges that can be very overwhelming. I am always trying to get healthier, and that too is a tough battle as Daniel is just getting bigger. I love my children, Sarah, Daniel, and Thomas more than anything in this world. I have been married for 22 years to John Hasselberger, and marriage has its challenges dealing with differences in opinion and different personality issues. I've dealt with severe depression and anxiety for years, and I a true believer in "choosing happiness" NO MATTER HOW HARD.

I started vlogging regularly about a year ago to share my journey and my story. Its been a wonderful experience. My vlog is my main source of enjoyment these days, because I am capturing the daily life of my crazy family.

Life as a Mom to a severely disabled child is very isolating and lonely. You feel disconnected and on another planet all together. I cry ALOT but I laugh more.

I love to make friends... and its funny how I basically spend actual time with, none. But I have found so many friends who want to be there for me in the You Tube community and through my Special Needs support groups.

In life you never know what to expect. What matters most is love. It can be challenging when people who are closest to you dont "get you".... and the bills certainly have NO MERCY for people caring for disabled children in their own homes, giving up their lives for their children. Welcome to America.

Life is beautiful. Despite all of the negative people around us, the negative world we live in, we can choose to grab each moment and value it and love it. Live for now. Because the reality is truly this, all we have is what is now. The rest either is in the past, or in the future. One is gone, and the other is unknown. Love eachother now. Right now.

Mothers Day Creative Cupcake eating

Early Bird and Round Robin

When Will That Desk Be done???

Saturday stuff May 2, 2015

Exciting day Friday

Epic Cookie Fail

Epic Cookie Fail

Too Many Thoughts in my Head. Using Mindfulness.

Secret Sister Unboxing April 2015!!!!!

To Baclofen pump or not to Baclofen pump, that is the question

Yesterday Daniel saw Dr. Cruz-Zeno, who is a pediatric physiatrist.  He specializes in rehabilitation medicine, and he is one of the doctors on Daniel's team who has been seeing him for his entire life, since he was about 6 months old.

Daniel has been through so much, and his current amount of muscle spasticity is, and has been for awhile, a big concern.  He takes a medication called Baclofen, which helps to manage the spasticity, or tightness, of the muscles.  Unfortuneately Daniel still has periods of time when he goes into these complete and total spastic "fits" I guess I could say, for lack of a better word.

These are Yo Gi Bo Pillows.  We would love them for Daniel at home.

The Baclofen activates directly at the spinal chord level.  So the oral baclofen that he takes, takes a while to be ingested, and get to where it needs to get to.  There is another way.  It is call "Intrathecal Baclofen administration"  And essentially, they surgically place a pump into his body, which will administrer the medicine directly into the spine.  Its a more effective way of controlling the tone problems.

Daniel with his buddy and therapist Adam

Daniel's spinal surgeon has given me the name of a Neurosurgeon at Yale New Haven Children's Hospital.  So I will be calling for a consultation.  They can actually do a test run to see if this method is appropriate for Daniel..  Because of the amount and placement of Daniel's spinal fusion hardware in his back, it may be extremely difficult, if not impossible to place a baclofen pump into Daniels body.  But it's worth a shot to look into.

I have been procrastinating in my mind with this Baclofen issue for about 6 months.  But, as we were getting ready to leave the doctors office yesterday, Daniel went into the most extreme demonstration of high tone and spasticity that I have seen in a long time.  So the doctor got to witness it.  It took his nurse and I a long time to even get him back into his wheelchair.

This process is long and complicated...  this process called managing Daniel's medical care.  I'm exhausted right now, and have too many things to process.  Somehow I need to find a method for organizing myself in a better fashion towards goal attainment.  I don't have a literal second in my day, for myself.

This time I am spending, right now, on this blog is my one hour between when Daniel goes to school and I have to go to the next thing on my schedule.  I would really just LOVE to relax for a couple of hours and watch you tube, make videos, and manage my planner.  I need a better planner.

This is me and how I feel every day

So who knows what tomorrow will hold?  I don't even know what the next hour will hold.  All I really know right now my friends, is that I need another cup of coffee.  And an appointment with my psychotherapist before I mentally go wonky.

Peace and love until next time!!!   Please come to our You Tube channel, "Julie Hasselberger"

https://youtu.be/hunnIPWj1Eo

Taking Sarah Back horrible traffic

Respiratory scare and a new addition to the family, for Thomas

Hunting Chipmunks and finding a Ben's Bell

Please don't leave without saying good bye

I think that it is so important to any relationship, mother child, husband wife etc  to kiss and hug goodbye each morning and kiss and hug hello. 

I woke alone with Henry by my feet and my husband and younger son had left for the day. Daniel was sound asleep.  I sleep in a small bed in a room by myself, with Henry my dog.  I can't sleep in my own bed because I snore.  I have been told that I can sleep there any time I want, as long as I don't snore.  

I can't ever make such a promise and I have repeatedly caused him great stress in the night with my snoring. So I don't sleep in my bed.  He snores too but I don't mind it. Funny how that is. 

So a person who needs to be comforted and loved sleeps alone in punishment to herself because of snoring. The doctor says I snore because I am too overweight. I don't feel like I will overcome that. 

But at the very least I asked him and my so to please always say goodbye before you leave. I was thrilled when he said he was sorry and would do so for now on. He said that he loved me and just didn't want to wake me.  The next day he came and kissed me goodbye and I was so happy that he understood. 

It only happened that one day. I woke today and everyone was gone except me and Daniel. Henry was sleeping on my feet. He is such a source of comfort. And I had to get up and take my meds and drink some coffee by myself.

The sun is peeking through the clouds and the birds are singing. I gave myself a hug and said a prayer.  So many of us are just not on the same page in life.  

Always hug and kiss those you love when you are leaving them for the day. And coming home from the day. 

You never know.  So now I face my day.