Flood, speeders, and grateful for plumbers

Visiting the pulmonologist!!!!!!

Giant Ball of Rubber Bands

This is how I sometimes see myself. A big giant ball of rubber bands all wrapped up tightly squeezing and squeezing. Then someone pulls one way, and the other.  And I am just yanked back and forth, as I fulfill everyone elses needs.  I feel very loved by my children, but in a lonely relationship with no communication, so if you watched my videos, although I don't discuss it, it is heart breaking.



But Sarah has a way of just CRACKING ME UP when I need it the most.  We really do have some fun sometimes.  Even if its only Target.



Thank you for coming to Daniel's blog!

Strobe lights, and frustration extended EEG part two

Trip to Yale EEG part1

EEG and when a test goes backward

It is August 14, 2014 and Daniel has been in patient at Yale New Haven Children's hospital since Tuesday morning, August 12.    He has a head wrapped up in gauze to protect the bunch of electrodes glued firmly to his head.  He is here because we wanted to record his neurological state when he experiences what I call one of his "hypertonic" episodes.  And in true form, he has been completely relaxed and calm during the entire study.

I never thought as a Mom that I would sit and silently wish for my child to have a melt down and go wacky.  But if he did, we would have been out of here.  I get too curious here, about what is going on with the baby down the hall being rushed into the PICU.  The hospital is a weird place.  A blend of routine, mixed with emergency, mixed with exhausted parents and bored administrators.  When I went downstairs to get a sandwich yesterday, I was standing next to some "important" looking doctor types discussing grants and blah blah blah and thought how ironic that it all seemed so "corporate" in their words.  I was anxiously waiting for my sandwich because I had no breakfast, or dinner the night before.  I should have packed food.  It gets too expensive.  With my infected sinus pain, and exhausted brain, I stood next to these two well dressed, good smelling, seemingly very intelligent looking men.  Talking in a language I practically didn't understand.  

Daniel is here because he has a brain deformity that I don't understand.  That no one can explain it fully to me.  When he goes into these freak out episodes, I am the one who bears the blast of the stress of it.  And he has to experience it.  But here, in this controlled environment,  he just lays there watching TV and looking at the ceiling with a glazed sleepy look on his face.

I am so tired, and wishing I could just ask my child what is wrong.  Instead, this sophisticated test of his brain, created by grants probably from some big important doctor people like those guys in the sandwich line, isn't doing what it should.  Or, he isn't doing what they expect him to do.  But kids like Daniel don't perform on cue.  They are a mystery.  It's part of the journey, the unraveling of mysteries.  Or the continuation of the wonderment that is a deformed brain.

Julie Hasselberger
Aug 14, 2014

Hanging with Thomas and Daniel

Nose Doctor!!

Sorry my blog entries have all been video blog entries, I will be making attempts to write again.  Have a wonderful day!

Tag Sale

Oh I don't think I love tag sales anymore but it turned out to be ok.  Ya do what you have to do, you know?  It's a crazy ride this thing called life.  I still have furniture that needs to go, and we never found the person who bought the bin of barbies.



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Dealing with episodes. Very frustrated

http://youtu.be/gkzcM86W3xs

DANIEL SAYS, "COME PLAY ALL NEWTOWN KIDS!!!"

Daisies, Murder, Therapy and scary bat

Lucky Penny

The lucky penny.  Whenever I see a penny on heads, I pick it up, say a prayer for financial protection and keep it.  If the penny is on tails, I turn it over and say a prayer for the next person to have the luck.

Life as me, is complicated.  It's a journey filled with twists and turns, details and management, and so much to do and work on.  In the midst of what I call "Daniel business" I often get so overwhelmed and have to sleep.  I do pretty well when I know that there is enough money to cover the household bills, groceries, clothes, insurance co pays, gas, that kind of stuff.  But every once in awhile there is a time when there just isn't quite enough.  It is in part due to the focus of my attention.  When I have some money and can relax I then get my head wrapped around the details and perplexities of Daniel's situation.  It truly is, without a doubt, quite complex.

When I run into crisis, like when I can't work due to work cutbacks, or lack of nurses, its a spiral effect.  And then Daniel needs wipes, supplies, etc.  Something happened to my cash flow.  I have to go back through 1000 transactions and bills to figure it out.  Life adds up so fast.  Especially here in this part of the state.  I am a full time caregiver first and foremost.  I do not get paid.  I get debited.  Its rocky now, because my fragile child is 16.  Raising money for his needs and the survival of our support structure was miraculous when he was little.  Today, I don't know what to do because there are very little responses.

This is one of those mornings where sleep is sounding better and better, and its 8am.  My husband and kids are sound asleep, snuggled in.  Daniel and I are awake.  Henry too.
Sunday morning should be a time of rest and family.  All I can think about is how can I get money back into my account.  Switching to a new health insurance coverage plan has required that I pay for every bit of mental health treatment up front due to a huge deductible.

Money is a stress that eats at your mind and heart.  It causes anxiety.  And when you have it, it provides relief.  Being a one income family so that I can care for Daniel is a choice we made.  Today, it would be incredibly to be able to concentrate on Daniel, but instead, I'm worried about not having enough money for my husband to do the things he wants to do.  I really do need help.  I don't feel invalidated, because I have this child who needs 100% of his mother.  But the people who could help, ignore me, because I've needed help before.  in the awkwardness of life, how do you let people understand that Daniel's condition is worsening not improving over time.  The need is there.

Have a tag sale? So much work.  Oh man.  I will just pray that things will come together.

Daniel is laughing right now.  Its a happy, belly laughing cheerfulness.  Priceless this kid.  I don't know how, but I am going to believe that somehow miracles will persist, even as time goes by and we all get older.  Miracles are for everyone, not just when they are babies.

Time to have more coffee and fight off my insidious depression with a dose of Daniels laughing.

Mr Incredible, my story and some dog fun

Shananigans and fireworks

BYE BYE FLORIDA

Naples day 4 trouble in paradise

The dynamics of a family on vacation are really a study in interpersonal relationships.  It is a process, you know what I mean right? The preparation time, so exciting! Getting on a plane and anticipating going far away for a nice long period of time.  Then you arrive.  This is where I have to stop for a second, and add in this paragraph.

Travel with a medically fragile child who just had a serious seizure two days before leaving, by the way.  Early preparation is key.  That includes making sure all prescriptions are filled, (like 12), all supplies are ordered in a quantity to suffice for vacation, shipping several large boxes of diapers, pads, wipes, formula, g tube feeding supplies, pulse ox monitor, nebulizer, swimming gear, and waterproof mattress covers.  When that is done in proper timing as to meet you upon arrival, you then proceed to the packing for the child.  That includes having rescue seizure medications in an accessible place and enough food to last a full day, just in case.  Travel necessities also include a thermometer, portable pulse ox, and blood pressure monitor (which sometimes I need also).  The bags are packed, the drive to the airport done.  Luggage checked. 5 boarding passes in hand.  And its security time!!!  With a 16 year old in a wheel chair, the process is almost comical but necessary.  The swabbing, scanning, poking and prodding all around the child and his chair is, of course, necessary.  The family of 5 completes the complex security screening, usually about an extra 10 minutes, puts the boy's equipment back together on his chair and proceed to the gate..  WHEW.  Almost there.  We have to change Daniel's diaper before the 3 hours flight, so finding a companion bathroom is done.  If Daniel has a BM in there, its a sweaty workout, on a floor, with pads and wipes.  Then we put TWO  diapers on him, so he doesn't leak, or GOD FORBID poop on the plane.  Make sure we don't forget the drooling towel either.   And its back to the gate we go, lots of people staring but I just smile through the sweat pouring down my face.    I go to the girl at the counter and check to see if there is any chance that our family can sit together?  Daniel, because of his condition, always sits in the front with me.  The remaining family goes to the back somewhere.  It makes my son Thomas sad, because we rarely travel and he wants us all together.  So, once we are turned down for family togetherness, we wait for the call to board.  We are always, I mean always, the very first people to get on the plane.  (And YES we touch the plane for good luck, even Daniel)  The wheelchair and the wheelchair tray must be gatechecked with a big lecture on how to be VERY careful with the chair because it doesnt fold up and costs more than a car.  Then a JetBlue employee wheels Daniel to the door of the plane.  Sarah and Thomas go in first to find their seats and get settled.  Then I go in to be ready to receive Daniel.  Dad carries him past the smiling flight attendants and plops him into his seat next to me.  I must then make sure he is positioned appropriately.  Thank you Dr. Smith for that spinal fusion, because Daniel sits MUCH better without scoliosis.  There is much shuffling and settling.  And then, we wait.  Upon take off Daniel starts to scream and bite.  The flight attendant leans over and asks if she can help.  I get his medicine bag, and give him some attavan just in case.  I also hear people around me buying headphones and I feel bad.  The screaming is quite loud.  I put my headphones on his ears, and plug into a TV show.  He calms down.  I order a coffee and breathe.

OK.  Where was I?  "then you arrive."  Everyone is excited, and they unpack and start thinking about what we are going to do.  We stay at a family member's condo in Naples, and its very accessible and convenient to properly care for Daniel.  It's also in one of the most beautiful places in Florida.



By about day 4, things start to get a bit snippity, and personalities start clashing.  As a Mom, I try to do the best I can to help each and everyone of my 4 family members with their concerns and complaints.  The reality is, however, that Daniel comes first.  His meds, his pump, his changing, watching for seizures, and keeping him engaged and entertained.  There are times when I just start ignoring the ridiculous rants and negative lectures and let my mind escape to the details of the beautiful plants and flowers that exist only way down south.



During this recent 10 day trip to Naples Florida, thanks to our wonderful cousin who generously helps us experience vacation with Daniel, we went through every stage of everyone's personality.  Mine too.  I turned into a pouting brat when my family opted for the pool one day over the beach.



Even under the worst of circumstances, ie. having a medically fragile child to bring around in a wheelchair, their personalities still emerge and it is a refreshing blast of "yes, we really are a normal human family."

Taking Daniel to Florida DAY 3

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.