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. 

March 31, 2015 and good bye to March but why is it still snowing...

All I can say is that this has been a long and cold and snowy winter.  It snowed today.  And yesterday.  I don't know about other people around here, but I am so DONE with that stuff.

My head hurts and it just feels like I need to spill.  So much, every day, and how I accomplish things is really a mystery to me.  I just go into some magic portal and transform myself into a mystic being I guess.

From homeowners insurance to medical bills.  From medical bills to mortgage modification applications, from applications to tax returns, from tax returns to FAFSA forms.  And then, hi ho, hi ho its off to the doctor we go, to see Daniel's spine and what has now been determined to be a large cyst on his tail bone area.  Doctors, dentists, eye care, home repairs, house work, WORK oh yes, I have work too.  When I can get there.   When I can't go to work I feel guilty because I know it is an imposition of great magnitude to the place that I work.   Get the picture?  Anxiety now.  Not sleeping.  Trying to do mindfulness and prayer.  And a friend sent me a nice suggestion of making vlogs about things I am grateful for, I like that.

But honestly, to be me, is the equivalent of being many different people all working on multitudes of levels all of the time.  It's more than a Mom juggle when you have a child who is completely dependent upon you for basically, his complete survival.

I'm eating too many cookies and my hair looks like crap.  I can't stay on a diet for the life of me, and I am supposed to because my sugar is too high.  I want to scream and run around the house like a crazy loon, but I'm too tired.

Just when I finally establish that it is OK for me to go try to sleep....  the dog has to go out.  So instead of into bed, I go outside into the cold.

And that is how the cookie crumbles.  Crap.  Now I want cookies.  It's just hard folks.  Very very hard and I am pulled and yanked in a million very necessary directions.  I'm only human.  I break down.  I get depressed. I pull up my boot straps and keep on keeping on.

If it would just STOP SNOWING.  I can't even think about Easter, nor do I feel like doing anything holiday related.  Why am I holiday phobic now?  I think because its just one more gosh darn CHORE to add to my already overflowing bucket of overflowing.

Rest and relax would be nice.  I just don't want any more anxiety dumped on my head.  Opened up the mail to some major medical bills for all of my blood work, and almost did the crazy run.  But there was just no time for that, no time for showering either.  I had to hurry to bring the baritone sax to the middcle school, drive to Norwalk to see Daniel's doctor, and race back like a crazy nut in a big big van to get to Thomas IN TIME after his lesson.

And for a half an hour Daniel screamed in the van.  I stopped and ate McDonalds.  and then I hated myself for it.  But I was starving and stressed.   This is why I am fat.  I am sick, exhausted, stressed, lonely, frazzled, addicted to food, and unable to delve into anything that is self help related because it is just too much for me to swallow.

F you snow.

Daniel gets back x rays, lazy night Chinese dinner

Daniel gets back x rays, lazy night Chinese dinner