HAIRCUTS AND IRISH GNOME SILLIES

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

Deck the Halls with Bleach Spray, a special needs Mom has a wake up call

On Tuesday, December 2, 2014 Daniel was happy, smiling, and enjoying a day at the mall with me.  Everything was normal.  On Wednesday he went to school, and didn't seem right. He was having unusually frequent bowel movements. By the time 6pm rolled around he was going every 10 minutes and he was extremely dehydrated.  I called the GI service at Yale, and they recommended that I take him to the ER for hydration via IV.  Which I did.  By the time we got to Danbury, his bottom was red and painful.  The waiting room was literally PACKED.  While we were waiting Daniel had a bowel movement and it was so painful that he briefly passed out, which bought us a ride to the top of the waiting list.

Fast forward to 1:00am and the doctor basically told me I could take him home and give him fluids through the g tube.  So I did that.  I was extremely exhausted, and stayed up all night on Wednesday. On Thursday morning the stools were worse, and he had fever.  I called GI again and they told me to take him to the "pediatrician" to have her "assess" him for dehydration, if she felt he needed to be seen at the hospital they would have him admitted.  She didn't think he needed to go to the ER so she gave me anti fungal ointment for the rash and said to "wait it out", she said, "it will pass in another day or so".   Friday morning, it was far far worse.  The pediatrician had told me to call her by 8 am so I called over there.  They asked me to come get a bunch of things to take a stool culture.  It was really gross, but we got the nasty poop into the vials and I rushed it back over to the doctors office.

The GI service at Yale had also told me to restart Daniel's regular feeds at 75% strength.  Which we did.  After a few hours, he was in distress from stomach pain and the rash was horrific.  The stools were literally non stop.  I called again.  The GI service started to suggest I take him to Danbury again and I said no, I am bringing him to Yale.  They agreed, and I packed up some bags and got Daniel and myself to Yale New Haven Children's hospital.  We went in through the emergency department, but got quickly admitted.  Daniel was severely dehydrated.

Friday night into Saturday he was in tremendous pain from the rash, and was on complete belly rest, having only IV fluids.   Saturday afternoon I got a call that he tested positive for C Dif.

I think we could have bi passed all of this back and forth, see the pediatrician, go to Danbury, go home, bullshit, and just gone straight to Yale and had a culture right away.  Instead, he is 4 days deep into the worst rash I have ever seen.

In the midst of Daniel being sick so many things were affecting me.  My house stopped having heat and hot water on Thursday, I was unable to go to work and I now I have lost income with Christmas around the corner, my van went dead on me twice while driving to New Haven, and I am away from Thomas, John, Henry and Theo.

Sitting alone in the room with Daniel asleep, Friday night, I felt the urge to cry.  A wave of depression rushed over my head and I had never felt more alone that I did sitting in that room.  The holidays used to be a time of friends, food, dancing, music, laughter, sharing, loving, caring.  Now I can't even go to the one little Christmas function we were invited to, Breakfast with Santa for Dream come true.  That was this weekend, on Sunday.  I feel like the "normal" world passed me by like a big cruise ship full of smiling people, leaving me alone on the "island of special needs Moms".  We don't get to be free spirited and joyful, and crafty and creative...  especially when we have sick disabled children.  Or worse, when we are in the midst of writing a eulogy for a deceased child, or grieving the loss of a child.  We live in a clinical world, where managing meds, appointments, schedules, doctors, therapies etc. takes hold of our free spirit and nails it down so it can't move.    So in our state of being captive to this life, we learn to love and adapt as best we can.  We want to put blinders on to the people who were luckier than we were when they were blessed with a healthy family.  We don't want to feel envious at the families with plenty of money and time to have social functions, vacations, and plain old jolly old lives.    We want to scream and shout when people are gawking at us in public, because its hard enough to find a place to park, and let the wheelchair down, let alone have our wheelchair bound son gawked at by a woman in a Christmas sweater coming out of the Michael Kors store. And we want our child to be accepted and loved, not stared at like a freak show.

The hospital is a place where health care workers and doctors actually speak a language we completely understand and we can reiterate our child's medical history down to every little detail and date.   And yet, as I sit here I can not remember the last time I did anything socially, or freely without worry.  I worry all of the time.  I have for 17 years.   I see lights going up, and Christmas decorations, and trees on top of cars.  I feel sad.  I miss badly needed work, and my income goes down the toilet, and then I have to pay for parking, and food, and my furnace repair, and my van needs work now.
Christmas what???

Back to Daniel, Saturday afternoon the doctor on call for the pediatrician called me to tell me that Daniel tested positive for C Dificile. A very nasty and contagious bacterial infection of the intestines.  So now they have some answer as to why he is so sick.  I don't know how he caught it, but the main thing is I am right now, sitting here, writing, in a chair, next to a bed, in a hospital room while my child is sick and moaning.

Even when things settle, I was just reminded again, that I will continually get knocked off of the complacency pedestal.  I am living on the island of misfit toys.  Wondering if Santa will remember us.   I don't own a cocktail dress anymore.  I don't own high heel shoes, or sparkly jewelry.  I change diapers and do laundry.  We work and struggle to keep the roof over our head.  We love, we laugh, we smile, we joke, we live as best we can, watching as the lights of the ship of "normal life" sails off with its joyful holiday music playing and scents of gourmet dinners.

Daniel is smiling watching Despicable Me 2, and somewhere a baby is crying.  I can hear the sound of life star helicopter landing on the roof right now.  I know that I am not alone.  I accept my world, and I love my children more than my own life.  I don't know if I will ever attend a holiday function again, or if I ever want to, because I have been jolted, jarred, emotionally scarred, traumatized, and given the most infinite and incredible love at the same time.   I'm different than you.  You know who you are.  And I am happy for you that don't have to live on the island of misfits, because you wouldn't fit in here.

So I will keep doing the best that I can.  Managing this life and this family as best as a mother knows how.  I will try my best not think back on what I "thought" life should be like as a Mommy, because that is definitely NOT helpful.  This is a way of life.  This is a way of love.  This is a way of being.  This is a way of adapting.  This is my way.  This is what being Daniel's Mom is all about.  This is who I am and my typical children, and my husband are all equally living a life adapted and affected by this guy name Daniel.  The one most affected though, is Mom.  My world stood still on the day Daniel was diagnosed, and then it exploded into millions of shards of life. Then they reformed themselves into an altered reality.  And God spoke to me somehow, and said, "here, this is for you. you are going to have to live here.  Don't worry, you will figure it out."

So it goes.  C Dif.  thanks for the holiday hospital wake up call.  Deck the halls with bleach spray.

A QUIET BIRTHDAY

John William Hasselberger turns 48
Happy Birthday to my husband
Reflecting on life in the future with Daniel

November 1, 2014

The start of a new month, and a sample of what the future has in store, I suppose. With both of my other children away, it was just John, Daniel and I in the house this weekend.  The quiet is both relaxing and unsettling at the same time.

Cold air blasts around the leaky windows and leaves have once again made a blanket of mess on the lawn. I am reminded of the work that needs to be done on this house that I just can't afford.   I am suffering from terrible sinus headaches and it seems that the bad weather is truly on its way.  John turned 48, and we really had an uneventful day just trying to buy him boots took energy.  We never bought him boots because he is one man who is hard to please, and has buyers remorse.  He is a funny simple guy with a giant sarcastic sense of humor and self battles with controlling anger and fighting his own demons.  He's been calm and pleasant lately and that makes me very happy.
We still still love each other very much.  

I wonder what life will be like when Daniel is older and we are older.  Where will we be? November is always a pivotal month for me.  I don't look forward to the holidays, because its completely materialized, but I do look forward to being together with my family.  We don't often leave our home anymore, because having a teenager who is severely disabled makes visits to other people's homes quite difficult.  No ramps, needing to change him, screaming meltdowns, positional discomfort etc.  Long drives are hard on him, and to drive him three hours to a place where he can only sit in one spot in his wheelchair while everyone else eats and talks, makes me feel sad for him.   So as the years have progressed, we much prefer to arrange for a nurse on at least part of the holiday, and just have it here at home.  Very few of my family members or John's actually come to visit.  It breaks my heart because I am the social extrovert, but I can't put Daniel through the travelling trauma.   So what has happened?  We have cousins, and even a grand niece that we have not yet met. Relatives have just "continued along" and not included us, because everyone just assumes we are not able to participate.

That being said, I have no ill feelings towards anyone related to us, I know everyone has their own bundle of things to do and places to go.  Thank goodness for face book, because I would know absolutely nothing about my cousins in distant states.  I've tried to communicate with most of them, but only three actually reply in any depth.  I have accepted that we are, in many ways, like outcasts, due to the different type of life we live.  It does not mean we are unhappy, but we are limited in what we can do, and where we can go.

So we carry on in quiet. Surrounded by the comforts of home.  Quietly separated from the world where normal "mobile" live  in our limited capacity situation.  Keeping Daniel happy and healthy takes alot of energy.  Ensuring that Sarah and Thomas get as much love and support as we can humanly give them.  Friends in our local community provide so much kindness and love.  If I needed anything, and posted it on line or in the Bee, someone in this town would make it happen.  And sometimes we do small random acts of kindness ourselves, just to give back in some way.

Anticipating the holidays, also brings memories of sadness and loss here at home, so sometimes quiet reflection isnt a bad thing.

Being the Mom of a child who can not speak, or walk, or talk, will forever leave me curious as to what is going on inside his head.  That sparkly smile just melts my heart.

John had a very quiet birthday.  He is ok with that.  On facebook, people go to wonderful Halloween parties, our to fancy restaurants, and have fun time with family.  I would have once loved to get all dressed up and go out somewhere fun.  But nurses leave at 5 on weekends.  That is my reality. As I have come to accept it, I have let go of wanting to do what the "normal free mobile non disabled" world can do, and I have accepted that the quiet love, and necessary care giving is God's calling for me.  I am lucky to have my son still with me.

So it was quiet yesterday, and today.  I will be glad when it is January and we are moving towards the Spring.  I will invite many people to come an visit for birthdays this month, for Thanksgiving, for Christmas, but few if any will be able to make it.  We are not exactly close, or on anyones priority list, except for our immediate family.

Sarah turns 19 and Daniel turns 17 this month.  So much to think about.  We are driving along a bumpy road in an old car, we hit pot holes and big cracks, that is the metaphor for my life.  But we don't stop because we know that our destination is going to be the most incredible fantastic place. And the road will eventually stop being bumpy.

Happy Birthday John.

Marching Bands and Unfriendly Golf carts

As life for everyone else moves along, so too does life for Daniel.  Thomas is now happily acclimated to his position in the Newtown High School Marching Band.  John and I have been enjoying our time together with Daniel, as we venture out to see the band and guard perform.  Through rain and power outages, so far, we have remained dedicated parents!!  Of course, technically our son is not even in high school, he is still an 8th grader, but he sure doesn't seem like a typical 8th grader.

The diversion of the music, and Daniel's total wonder and amusement of the people, lights, music, whatever... makes it fun.  There was once a day that I played in my high school marching band. I played the flute and piccolo and music was the only place that I could go to escape stress and build my self esteem.

When we left the stadium at Trumbull high school, we had a really good laugh because a "golf cart" that they were using to transport disabled persons to and from the parking lot, was parked right up next our van blocking access to our lift.  It just seemed so incredibly funny to us, I am not really sure why.   Life is full of ironic twists sometimes.   I imagine I was probably one of the few people who stopped and talked with the EMT's, and stood and vlogged.  I have become completely unaware of whether or not people are watching me talk to myself into my camera.  I actually find humor in the looks I get.

Newtown came in second place at this competition.  Norwalk High School has an incredible band, they are apparently our nemesis.  I'm just in it for the ride.  Every single one of these kids are working so hard.   And no child who has the ability to perform should ever be taken for granted.  That is how I feel anyhow.

Enjoy the video.  Warmest regards from my heart to yours.

 PLEASE ENJOY THIS VIDEO OF "MARCHING BANDS AND UNFRIENDLY GOLF CARTS

Our NY Jets Adventure, Thank You Marc Pintel!!!!!

Marc Pintel was a Hasselberger for a day!!!

This September we had a special event happen to our family.  Marc Pintel, along with the Pintel Family Cancer Support Services provided tickets to the Jets Game on September 28, 2014 at Metlife Stadium.  They purchased tickets for all five of us, and Marc worked extremely hard to make sure that the seats were all together in the wheelchair accessible area with access to the Lexus Clubhouse.  It was very generous of them to provide access to this event for our entire family.  Daniel Hasselberger is a 16 year old severely disabled and medically fragile young man.  He was born with a devastating brain deformity called Polymicrogyria.  Daniel's strongest ability is his acute vision and awareness of sights and sounds around him.  He suffers from seizures, respiratory problems, stomach problems, can not speak, walk, and is fed by g tube only.  He does however, have the most beautiful smile.  So seeing that smile is like seeing the biggest and brightest star.  His prognosis is unknown.

MARC PINTEL AND DANIEL HASSELBERGER

Marc Pintel also had a special sweatsuit made by Ursula, from Party planners.  She didn't charge him for it, which was very kind of her.  The sweat suit he wore had "Daniel's Number 1 fan" on the front and on the leg of the pants.  On the back of his sweatshirt read "the Hasselberger Fund Rules".  Marc took great pride wearing the sweat shirt and sweat pants at the game.  It was very kind of Ursula to do this for Marc so he could represent Daniel and what he had done for our family.  He was a "Hasselberger for the Day" on Sunday September 28th, even giving up an entire day he could have been spending with his son Spencer to spend it with the Hasselberger Family.

Additionally, prior to the game, Marc contact the NY Jets and asked them to send something special to Daniel.  They sent him an autographed football, signed by #27 Dee Miliner.  The Jets don't send out personalized footballs to everyone, so this was very special.  We are going to put up a display case for this football and the many other nice things Daniel received at the game.

So we owe a very special thanks to Marc Pintel and the Pintel family, the New York Jets organization, Ursula from Party planners who made Marc's outfit, and everyone at Metlife Stadium as well who really went out of their way to help us.

Marc Pintel was extremely kind to provide this great experience to our entire family.  We can't thank him enough, the Hasselberger Family enjoyed a beautiful day at the stadium, and the access to the Lexus Clubhouse made it very easy to care for Daniel.   It was a wonderful day.   Marc is a wonderful guy who wants to make the world a better place and wants to be inspiration to others.

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The Day of the Jets Game, September 28, 2014, by Julie, Daniel's Mom......

I had spent the prior evening preparing and planning what we would need for Daniel.  Daniel is 100% G Tube fed, and has medication needs through out the day.  He needs regular medication, and medication for nausea, anxiety, and seizures.  I woke up at 5:30AM, and took a very quick shower, got Daniel's diaper changed, got him dressed (WE DIDN'T HAVE ANY GREEN CLOTHES OR JETS CLOTHES).  Prepared his feeding pump and packed up two enormous bags of supplies for the day.  John figured out our driving directions and filled a cooler with drinks.

John, Thomas, Daniel and I left our house in Sandy Hook, CT at 7:00AM.  We drove on this beautiful sunny Fall day out to Staten Island, NY to Wagner College to pick up Sarah, who we had not seen since August.  I wanted to cry when I saw her come out of the lobby and walk across the bridge.  Sarah is 18, almost 19, and studying Arts Administration.  We are so proud of her.

Once we had picked up Sarah, we were all together as a family, and my heart felt so happy.  I separated my brain from all of the worries that were eating away at me, and chose to have a special time with my children.   Readers, you have to understand, life with a severely medically fragile child pretty much prevents us from doing things together.  It is very RARE that the 5 of us get to go and do something FUN, together.  Very RARE indeed.   While John works very hard to provide for the family, I work very hard managing a complicated child and a complicated mess of financial pressure.  I try to work when I can, but its never enough.  Caring for a disabled child puts pressures on a family that far exceed the number of words I can paint on this canvas.  So lets focus back on the sunny day of our NY Jets adventure....

We arrived at MetLife Stadium, and immediately the excellent customer service started.  The parking lot guy made sure we went right to the best Handicap spot available.  We have an over sized Ford E250 Conversion van and it is difficult to park sometimes.  I need to have the van close in case Daniel has seizure, illness, etc and we need to get him out.  I laid Daniel out in the van, and changed his diaper, and made sure he was all set to go in.   John said we looked like dogs in a sea of cats.  We did not have any green on!!!  Being from Sandy Hook, you think we would have.    But we definitely didn't have any Jets clothing.  I wish we did, everyone looked like they were having so much fun.  People actually tailgate, cook meals, have fun, in the parking lot.  That really happens!!! I've only seen it on TV.

When we proceeded to enter the stadium area, a very nice man in a suit, I wish I got his name, came up and led us personally through the gate and help get our things properly checked.  Everyone was so friendly, and so helpful.  The sun was very bright and it was 80 degrees with a simply perfect clear blue sky.  What a blessing to be having fun on such a gorgeous day.    John and Thomas played the "toss the football" game outside of the stadium and of course John my "Mr. Athletic" got the Ball through the hoop and won a prize.  Thomas and John got to take a selfie, but I'm not sure where that picture went.

About that time I received a text message from my friend, Marc Pintel, who had made ALL of this possible for us, that he was arriving at the stadium.  We went in and upstairs to the Lexus Clubhouse area.  That place was awesome!!  To be able to sit inside and see the stadium outside, so cool.  They had TV screens everywhere.  Honestly, we felt very humbled to be there, it was way more luxurious than I thought it would be.   We found where our seats were and we all just stood there mesmerized by the stadium.  We had never experienced a stadium before like that.   I took Daniel and the kids and went to look for Marc, I found him eating his lunch wearing his "Daniel's #1 Fan" outfit. He looked great!!  I couldn't quite put my finger on it, but something about him looked different.  Later I found out he had lost 37 pounds and looked terrific.  I was too mesmerized by the sweat suit Ursula from Party Planners had made for him to wear.  So sweet.

The kids got to play some games and win prizes in the Lexus clubhouse. Daniel even got his picture taken with a couple of pretty cheerleaders. They got pins, headbands, gifts from spinning the wheel, etc. That was fun.

The game started at 1 and we were all very excited.  Actress and singer Jesse James Decker sang the national anthem, and it gave me chills.   The Jets were playing the Detroit Lions.  Thomas and Sarah were watching the game intently, as was John.  Daniel was looking all around, way up high mostly.  But he wasn't his normal giddy happy self.  He had a stomach ache, and twice that day I had to bring him to the family restroom where I could lock the door, put him on the floor and clean and change him.  That was very difficult, and probably the only time during the day that I actually cried.    Some things are just never easy no matter where I go.  Changing a terrible poop diaper on a 16 year old is one of the difficulties that most people don't realize special needs moms go through.  Sigh.  It was rough, and I made the entire area smell so bad that a cleaning person came right in after us each time we went in.  Made me feel like a jerk, but what else am I supposed to do?  Oh well.

The seats we had were in the shade, so we had no worries about sun.  We had $6.00 cokes and $5.00 waters, and after buying lunch I had no money left to buy the kids a souvenir t shirt... but they understood completely.  Three cheeseburgers and fries, $75.00.  John had wanted to put together a tailgate picnic, I should have listened to him!!!  But it was something we would never get to do again.

The Jets lost the game, sadly, 17 to 24.  But it was a great experience.   Why was it great for Daniel? Not because he is able to understand the game, but because the sensory feeling of the roar of the crowd, the music, the lights, and even some fireworks when a touch down was scored really entranced him.    I never quite know how Daniel is going to react to things, but he seemed very happy.

This Hasselberger family has been through hell and back repeatedly for 16 years.  We have daily challenges that push me to the brink of sanity.  I don't sleep nights, and Daniel's medical care is astronomical.  John and I love each other very much, but the stress can eat away at even the best of relationships.  We are coming up on our 22nd wedding anniversary October 3rd!!    But where I am going here is, we seldom do anything as luxurious as a Football game at MetLife Stadium.   The kids were so excited, as if we were going to a theme park!   Just being together, makes us happy.  Having Daniel in our life has taught us that family is so important.   When we get together, and there isn't financial stress, or medical stress, or anxiety stress, or stress stress....  we get a chance to let our guards down a little bit, and laugh.   That is the true gift.

So we had a beautiful gift of watching a football game at Metlife Stadium.  It was  a day where everyone was in good health, and a trip that seemed overwhelming, really wasn't.

Marc Pintel left the game a little bit early, so we took some group pictures and said our goodbyes. We left the Stadium about 4:00pm.  Sarah was returned safely to her campus by 5:00pm and we hugged and kissed good bye.  Then we drove back home from New York City to Sandy Hook,CT, picked up Henry the dog from Grandma and Poppa and went back to our life.

Our NY Jets adventure was a success.   It is all because of Marc Pintel, and his wish to give the family a day of FUN.

Thank you to Marc Pintel, the Pintel family, the NY Jets, Ursula of Party Planners, and everyone who made this day a reality for us.  There is no measure to the amount of gratitude we have for just a little relief and fun for a day.

Much love,

The Hasselberger Family:  John, Julie, Sarah, Daniel, and Thomas

Vacation thoughts from home

Will I  remember the way it feels to step from dry coolness in a small condo, out into a warm, humid, sunny walk way lined with mini palm trees and other tropical plants? To walk across the driveway with the squeek of my flip flops and the smell of my sunscreen? Will I forget the way I always tried to see as many geckos as I could, those cute little lizard guys who live all about the complex just scittering and scattering about?  When you come home from vacation in South Western Florida to the "north we know".. its almost like someone plucks you from a dream and drops you harshly back into a cold pool, where there are no palms, no geckos, no amazing vegetation and spectacular sunsets.

Will I remember being able to say, "I'm going to the pool" and just go over to it?"  The white powder sand on the beach, and the 88 degree water that envelopes you in a salty floating paradise under a blue sky, will they fade away into merely photos?  Probably.

What I will never forget is the look on Daniel's face as he is mesmerized by the plane taking off, by the feel of the Florida heat, by the warmth of the ocean, by the lights in the ceilings, by the soft waves coming in and out leaving so many gorgeous white shells.  And Daniel's face as John carries him into the pool, wraps a pool noodle around him, and just floats around.  That look of joy, comfort, freedom, relaxation, and love.  Secure in Dad's arms he lets his body float, kick, and splash.  He bares a farmers tan from his rash guard shirt, and sports a few bug bites on his toes from rogue biting flies that get us all. That face so simple and gentle soaking in the world with his eyes and noticing intricate details of a typical day that to him are amazing. 

Seeing him happy is the reason why we do it.  If it were not for family who love us, we wouldn't be able to witness that joyful face in a place so different and so stimulating.   It is just pure happiness in the moment.  Daniel is pure happiness and truth in the moment too.  The rest of us are all wrapped up in our complications.  Daniel is just enjoying life as it comes and presents new things for him to experience. 

It's simple and completely spectacular. 

Coffee in my favorite Florida chair

In a white soft leather recliner, that swivels 360 degrees, I'm sitting with my feet up looking out a window at Florida.   Daniel is sleeping in a crazy but happy position in the bed I just got up from. When we travel one of the biggest challenges is where do you put a 16 year old disabled child to sleep.  Gone are the the days of bed rails and  pack and plays.  Usually he sleeps right up next to me.  Because he wants to cuddle up and be close.  Daddy is on a trundle bed at the other side of the room. It's like a camp.  The other kids get to have their own rooms and that's ok.  They are getting older now and need their privacy.

 It never ceases to put a numbing surreal feeling in my brain when I try to envision my future.  It includes the three of us, in this camp, or some other camp, so that I can take care of Daniel.  A far cry from the happy retirees I see down here in Florida enjoying their grandchildren, or just strolling hand in hand down the beach.   Our nest will always include the one baby bird who has no wings.

Florida has become, to me, a place of obsession.  I love the weather, the air, the water, the people.  Handicap spots are plentiful, and people are patient.  Beaches now offer beach wheelchairs, so Daniel can go take a walk down the beach, or just get right up to the warm water of the Gulf of Mexico.  The roads are lined with palm trees and the homes are very solid structures full of ceiling fans, tile, and Florida flare.  Sarah and I walked down to the beach with Daniel last night, I'd say it was about two blocks from this condo we are in.  He smiled and looked with fascination at everything he saw.  It is a far cry from Sandy Hook, CT where we can not walk safely on our own road.  

Coffee tastes better for some reason when I am rocking in this chair looking at some species of palm tree that has grown about 5 feet taller in the 6 or 7 years we have been bring Daniel here to John's cousin's condo.

I don't fear for his health and well being in this place, after all, its Naples Florida. There is a hospital near by, and a doctors office on every corner of some sort.

Sarah and I have been engrossed in episodes of HGTV all week and all I can say is that there isnt a show on that channel that I don't love.  I would just like to see an episode where they have to accommodate for a disabled child.

As my moment of peace is drawing to a close, I will add a few pictures to this post and simply end until later. Daniel has started making his "hey I'm awake in here" sounds, and he needs much care in the morning.  This white leather chair is my very favorite item in this entire condo.  Even if my moments in this place of peace are few, I will say that I thoroughly enjoy them.  Coffee just tastes better in this chair.

The "Julie" episodes

I've been a special needs Mom for 16 years and 6 months.  Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed.  My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.

But here's the "thing".  I am only human.  I also have two other "normal" children, Sarah and Thomas.  Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball....    And as they age and grow I proud just like other parents.   The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent.  My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness.  It happens quite randomly.  I can't control it.  It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent".  But I'm not.

On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students.  Thomas is ONLY going into 8th grade but he is allowed to participate.  He is so excited, of course, being the blossoming talented musician that he is.  And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid.  John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.  

And then, it happened.  The "thing".  Tears welled up in my eyes and my heart started to pound.  I can't stop the tears, so I have to let them pour.  I try to hide and slouch down, but my husband keeps whispering "whats wrong?  are you OK?"   I wave him away and say "just give me a second".  Because I am thinking of Daniel.  Daniel who will never march in a band, sing a song, play a cello, or write a story.  Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady.  Graduate, and go off to college where she is now thriving.   Daniel WOULD have been a senior next year.  He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.

I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing.  There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.

By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents.  These parents don't know about Daniel, most of them, so its nice to just be one of the crowd.  When I start showing up pushing the wheelchair, people treat me differently and the kids stare.  It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".

Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts.  I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form.  He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.

Yesterday was June 12, 2014.  One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system.  She is 21 and can no longer attend.  The school had a lovely ceremony and reception for her, her name is Emily.  It was a beautiful moment, profoundly happy and sad at the same time.  The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish.  9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly.  Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.

I must conclude with something that will change the depressing nature of this post.  The love in that graduation ceremony yesterday was something that you could feel in the air.  There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met.  It was a beautiful testimony to what these kids teach us, and show us.  It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds.  And her brave and dedicated family who have dealt with so many challenges.  

(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)

I have to have these episodes, its just in my nature.  It's just who I am.  And I never claim to be super woman who can endure this life with the strength of a giant.   I'm just Julie.  Failing and succeeding just like everyone else.  The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive.  That is a role I have gladly accepted, even with all of the sacrifices that it brings.  I am entitled to a good cry.  It cleanses out those feelings.

Did you do that paperwork today?

" Hey Julie have you filled out that paperwork yet?"   No, not yet child.  This is why.  I am going to run through my typical day.  Having caught an article recently that stated most people have approximately 5 hours of leisure time a day, I just didn't see how that was possible when you are the Mom of a disabled child.

So here goes.  Ready set go.  Starts at 4am when Daniel typically wakes up laughing.  I go to his room, change his diaper, and settle him down.  Back to bed if I'm lucky.  If not, then coffee is on.  Take the dog out for his morning business.  Help Thomas get his breakfast and get onto the Middle school bus at 6:30am.
Come back inside and feed the dog.  Unplug Daniel's feeding pump from his belly and set up a fresh bag for the day.  Get his morning medications ground and dissolved, give a breathing treatment if needed, give medications through the g tube, also known as the Mickey Button.  Cute.  Get Daniel changed again because he goes alot in the morning, then get him dressed for school.  Lift him into the wheelchair.  Buckle, snap, and velcro him into the chair that holds him into safe positioning.  Get the tray and put it on the wheelchair.  Make sure the back pack has his AFO's, immobilizers, and hand splints.  Brush his teeth carefully, wash his face, and then its off to the bus at 7:30am.  Bring Henry also to the bus.  Bus aide gives Henry treats, that's a thing we do.

After Daniel is safely ready and launched, its back into the house I go.  Clean up dishes in sink. Throw a load of stinky Daniel laundry into the washer.  Scoop the cat box and feed the cats too.  Go upstairs and shower, make sure I have something that looks half way decent to wear.  Hair gets blown out and styled sometimes. My face is lucky if I put on makeup.   Go through bills to make sure I didn't miss anything.  It happens.  Write down phone messages from yesterday with the intention of calling back later, but never get to it.

Usually I have to then drive to Newtown Middle School and drop off the Baritone Sax.  Get over to AllState in Monroe and do my best to work until approximately 3pm.  This is on a normal day.  If it were one of Daniel's MANY doctors visits or hospital clinics, I don't make it to work.  For the purposes of this blog post, I was able to work at AllState for several hours.

Leave Monroe at 3:00pm.  Get to Newtown Middle School to pick Thomas up after Jazz band ends.  Get Thomas home so that he can get started on homework.  Walk the dog.  Run a vaccuum to get up the cat hair.  Have a conversation with the nurse about how Daniel's day was.  Review his medications to make sure that something doesn't need to be reviewed.  Plan something, anything for dinner, and on a good day actually prepare it.  Or go with deli sandwiches, whatever.   More laundry.  Feed the kids.  Clean up. Do motherly housework until 5 ish.  Feed the cats, feed the dog, and take the dog for a walk.

Then somewhere about 6:30pm Daniel's night time regimen begins.  Lets assume I have no helper, because that happens.  So then I carry Daniel into the shower, and bath him (his lift motor is broken) and get him all clean and ready for bed.  Get the nighttime meds ready, breathing treament and vest treatment, and get the pump set for night feeding.  Daniel gets g tube fed around the clock at a slow rate.  Settle Daniel into bed.  Go into the kitchen and make formula, just like you did for babies.  Boil water, and mix the Neocate Jr. to make a supply for the next day.  Put on a favorite movie of his, or just something sensory like the lava lamp or the puppy that makes stars on the ceiling.

This is about the point in my day that I finally stop and sit down in the recliner in Daniel's room.  Maybe check out facebook, or cringe over my budget, or go onto you tube, or write, or just go through email.  Then at about 8:30pm Henry goes out for his last business before bed.  It's upstairs, put Henry in his crate.  Get the monitor on, and by my bedside.  Take my medication.  Snuggle into my bed.  Turn on the lap top, start writing but then experience the exhaustion swallow me up.  That's usually approximately 10pm.

When did I have 5 hours of leisure time in there?   I have an application that I have needed to get filled out and mailed.  I read an email asking me to fill it out and send it.  I had every intention under the moon to do that, but finding any time to work on this.  "Fill out that application and send it in."  I will.  I will figure out how to work it in.  At 4am when Daniel jolts me out of sleep, I'll try to do it then.

I often get to the end of my day and realize that, crap, I didn't fill out a form, call a medical supplier, schedule an appointment with a doctor, pay a bill.  And my feet hurt, and I'm tired.  I'm sleep deprived.  And the cycle begins again.  Sometimes with different places to be and things to get done, but never stopping or slowing down and never doing anything to bring personal pleasure to me.  Usually.

It's a whirl wind.  Much like when you have a newborn precious baby.  But bigger, much bigger diapers.

The application I have to fill out is going to have be on the tomorrow list.  If I can stay awake long enough to write one.