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

So "whaaaaat is that?" Gastro...ento... what??

"WHAAAAT?"

Daniel in December 2012 under the care of Pediatric GI for severe pancreatitis  

Gastroenterology has been following Daniel since he was an infant.  We have gone through several physicians, but originally we started with the pediatric GI team at Yale.  At some point, they had no doctors and they referred us to Connecticut Children's hospital.  Its always a crap shoot with doctors, but we had a terrific doctor for many years at CCMC.  Then he left.  And we got shuffled.  Care has been, OK.  However, when Daniel had acute pancreatitis last December the Yale Team was outstanding. I decided to transfer for his care for his GI and nutrition back to Yale after all of these years.  It's closer, and we have many other specialists there.  Deciding which specialist to bring your child to, for their complete nutrition and contol of reflux, etc. is a big step.  You have to trust and have confidence.  I kind of lost some of that with CCMC, only because the doctor was very busy with his research projects.  Anyhow, its all good.   This explains what the GI doctor is, and what they do.  I talk about GI alot, this is Taken from the Yale website...

YALE SAYS "Our gastroenterology and hepatology doctors are nationally recognized experts in all aspects of nutritional, liver, pancreatic and gastrointestinal disorders, and skilled in the most up-to-date and innovative diagnostic and therapeutic approaches for children.
Gastroenterology
The Pediatric Gastroenterology program offers diagnostic and treatment services for children and adolescents with a wide-range of common and rare gastrointestinal disorders.
The Pediatric Irritable Bowel Disease (IBD) program provides care for patients suffering from inflammatory bowel diseases, such as Chron's disease, ulcerative colitis and other intestinal disorders. We combine a multidisciplinary approach with the latest diagnostic methods, research-based treatments and surgical approaches to develop effective, customized approaches for each patient.
Understanding that teenagers and young adults with IBD have a unique set of needs, our transition program helps prepare them to become independent in caring for themselves. Our partnership with our adult IBD program helps us make the eventual transition from pediatric to adult gastroenterologist a positive experience for all.
The Pediatric Gastroenterology program cares for children with a wide array of GI disorders,

including:

• Abdominal pain - Yes   Celiac disease (nope)

• Chronic diarrhea yes Constipation yes   Failure to thrive yes

• Feeding problems/swallowing problems yes

• Gastrointestinal esophageal disorders yes

• Gastroesophageal reflux yes
  

• Inflammatory bowel disease nope  

• Lactose intolerance nope

• Malabsorption yes

• Nutritional support of acute and chronic disease yes

• Pancreatitis yes 

• Peptic ulcer disease nope     Vomiting yes

a rate of 90mls per hour 24 hours a day

SO THE NEXT TIME YOU SIT DOWN TO EAT AND ENJOY A NICE MEAL, YOU ARE VERY LUCKY AND SHOULD BE VERY GRATEFUL.  DANIEL CAN NOT SWALLOW SAFELY

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".