Separate but parallel universe

May 30, 2019 

I have often described a feeling of being in a separate, but sort of occasionally parallel world.  Having a severely disabled child, while also raising two typical children placed me in a strange position of belonging to one world, in a false state of "being like every one else ness" that you feel at a kids soccer game, or watching a band performance.  When Daniel was not with me, I just melted into the crowd.  

When Daniel was with me, because I never wanted to leave him out of anything, and in the early years (prior to the blessings of medicaid expansion) I did not have any nursing help.  

While navigating my own personal trauma, depression, PTSD and stinky fibromyalgia, I was also keeping a brave face on.  Letting the world think I had it all together.  And boy do people think I am some sort of a super hero.  The compliments flood, because I honest think that people don't know what to say, except "you are an awesome mom", "you are so strong", "God only gives you what you can handle", and it goes on and on. 

But the reality is, when push comes to shove, people don't seem to want to be around me.  For 5 years, Thomas (in his spectacular musically talented way) was in the the Marching Band.  I was so excited to be a band mom.  To be involved, and on committees and do stuff.  Only the real news was, I couldn't commit to anything.  Never knowing if I had nursing care, or if Daniel was going to be well enough, left me in a lurch.  So I just took a seat on the side line, and watched everyone else be pit parents, sell merchandise, run bake sales, laugh and talk and make friends.   While I sat, most of the time with just Daniel and I, in our little wheelchair accessible bubble. 

A sprinkling of parents would certainly be friendly, no one is mean, but just like in the rest of the reality of life, people mostly look away from a caregiver and her son.  They are too focused on themselves and their children, and their jobs as involved and supportive parents. 

I never expect anything from anyone, I let it go a very long time ago.  And I no longer have even a single friend that I can comfortably call and say, hey... want to go for a coffee?   

I did have one friend, who had a son in band, he had mild special needs, but she was SO nice to me.  We kept talking about meeting up for coffee.  But then she had to move to Pennsylvania.  Now I regret that we never connected at Starbucks.

I don't want people to pity me, but I just gave up after awhile.  The isolation while in a crowd thing? Is a real thing.  Or maybe I just have incredibly bad dissociative disorder.  

I am 52 years old.  I have been reinventing myself, every day, since the day I found out that my child would need me 24 hours a day.   PMG is a rare condition.  There was no outline for what would happen, there still isn't.  Not that anyone has one really. 

It surely would have been nice, to have had some close friends over the 5 years that Thomas was in band.  I have that sprinkling of a few, who when I run into them, they are absolutely genuine and wonderful.  For the most part, for every thing, unless I had John by my side, I was floating in that parallel dissociative separation called Special Needs Mom. 

Carry on.. 

Why I am a liberal and democrats send me mail

Wow. Suddenly... in my mail... NON STOP mail, articles, and information from the DNC and other democratic organizations. I don't even mind at all. Of all the bad that has happened, in my opinion, the one pretty interesting thing is the amount of democrats working hard to be much more a part of the process, more astute, more supportive, and it feels like people really care. I think it started with the letter I wrote during the campaign, about my son, and the disabled, wrote a letter to both parties. Only one ever returned the letter. And yes I am a registered democrat, but I have not always voted on the party line. Although my life has shown me that I am a far more liberal thinker. Because I was tossed head first from "conservative" into "what the effffff am I gonna do" and then I was basically sexually harassed at my job, and then fired because my son had disabilities that were just driving claims up way too high for my employer. And when you have to figure out alternative ways of living... just like when people with disabilities have to develop new ways of living life... all the "old rules in the box" just don't tend to apply any more.

I am a dreamer. I am altruistic to a fault. I believe that love matters and is the most powerful force in the universe. I believe that our planet is not ours to destroy. I believe that truth and justice, ethics and morality do matter. I believe that people should have a right to love who they want to love. I believe that disabled children deserve an education just like all typical children. I don't know the solution to the extensive and complex cost of health care, and I don't think its something that is going to be simple to solve... but supporting a child like my son, or worse, costs millions over a lifetime. If they take away medicaid and medicare people like my son, will suffer or even die.

I don't believe in walls. The billions they are spending to build a physical wall, should be spent on programs and job creation, and I don't think a physical wall is going to accomplish anything more that more division and more hate. Do immigrants need to come legally, yes..I believe so...but by the time our money pays for this wall, someone else will probably come along and stop funding it. I cherish the globalization of our nations, and the incredible diversity that we are so blessed to have. My first love of my life was a black guy... as we said it back in 1980, and I was punished, made fun of, and forbidden to see him. Then... I just did not understand... he was such a great guy, we got along so well... and that was all that mattered. Even teachers gave me a hard time. We were told not to see each other. We did anyways, of course, because I was always rebellious, to some degree. But I was also bullied after that and for years... I hate to see our world sliding backwards. And that's how it feels.

I pray every day that peace will prevail, and that somehow, someway the negative fear mongering, nuclear thoughts that are filling every one's minds... will be replaced with progress towards peace, not hate. More jobs won't equate to... alienating the world, and eliminating the EPA. Our children should be able to travel and study the world... work globally...without threat. That is what I pray for.

I believe that Jesus Christ is my savior. That it is up to me to have a personal relationship with Him. That it is NOT about what deeds you do, but about how He lives in you. And with you. Because if you have a true spiritual connection with Christ, He will guide you. I don't believe that the way to God is through deeds, I believe that God in our hearts will use us as his vehicle... We all have unique gifts and talents... To hardcore conservatives, who preach right and wrong because they study and interpret the bible one way, those folks probably think I am wrong. But I am just sharing my own personal experience with my Savior. I personally accepted him into my heart and my life. And that relationship is my own spiritual experience. I was baptized by immersion at Walnut Hill Community Church and my life was personally changed forever.

So... the fact that someone is actually interested in my opinion, and my experience, as an MBA Graduate corporate career woman.... tossed out from "that" world, because of a little boy who needed me... and still struggling to survive... would matter. I had a dream once, it was to keep rising the corporate ladder, make lots of money, invest lots of money, educate my kids, give them security, and retire with my husband in a place where I can sit on a beach. THAT plan is gone. Forever. But somehow... we just a bit more compassionate, a bit more aware of pain, of suffering, of life without a voice, life without eating food, life without ever walking... life... with cancer, more children funerals than adults. Not having enough cash to get groceries sometimes, but creatively keeping heads up. Walking through my rich town, knowing that I have a fundraiser, and not feeling ashamed.

Did I go crazy somewhere along the way? The disabled, the struggling, the people in pain, people dying, watching loved ones die, depressed, sick lonely.... poor. Everyone has a story. Everyone matters. Whether they are gay or straight, black or white, Christian or Muslim or Jewish or Atheist.... we are all humanity. Somewhere... along the way, the corporate world said "fuck you" to me. And I couldn't fight back, because I was too busy being a special needs Mom. And I feared for my family, because I worked SO HARD to get to that income level... and then it was gone. But... we are fighters. Liberal thinkers, try new things, embrace technology, kind of thinkers. That's not so bad. And the journey.... it continues.

Embrace who you are. (all this from mail from the democrats.. lol)

Julie Hasselberger

February 13, 2017

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.

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

When Daniel turned 17 years old.....

On November 22, 2014 my son Daniel turned 17 years old.  Unlike most kids, having a birthday for Daniel has always been a challenge for me.  He doesn't eat via mouth, so food is not logical.  Gifts? Well we can get him things he needs, but he isn't really cognizant of what he needs.  We sing to him, he likes that.  We give him balloons, he loves balloons.  It's not typical.

Daniel is not able to speak.  But we know he loves to watch and look at everything.  The mall, in our case, the Danbury Mall in Danbury CT is his favorite spot to just take in the sensations, sights, sounds, smells, etc.  He goes into this really happy state when we take him into the mall.

So on his birthday my husband John, son Thomas, Daniel and I walked around in the mall.  We ran some errands, had some food, but the main purpose was for Daniel to enjoy being at the mall.

Last year, when he turned 16, he received over 800 cards from all over the world as a part of a "card shower" that we had started.  It then turned into gifts, and visits from many people who just wanted him to know that they loved him.  It was honestly, one of the most amazing things I have ever experienced, the opening of the mailbox daily to see piles of cards and pictures.  Wonderful.  This year we didn't do a card shower, I really just have been so incredibly busy and overwhelmed.

And Daniel received two cards, one from his grandparents, and one from his Best Buddy, Ryan Williams, who we have recently become friends with through the best Buddies program at Newtown High school.  Ryan also brought Daniel a Newtown Marching Band and Guard sweatshirt so he could wear it when he goes to watch Thomas.  That was really sweet, Ryan and his Mom visited for a while, and it was a nice visit.  He's a great kid.

Special needs children like Daniel, do not have the ability to ask for anything,  They can't make a list, and stress out your financial capabilities.  Daniel is sweet, and quiet.  He asks for absolutely nothing but finds joy in being with people.  Sometimes, he doesn't react and it seems as if he is just staring off into space looking at the ceiling.  Well, he probably is, but he is most definitely aware of the fact that people are with him.

And there is the mother guilt.  "I didn't do enough for him", "I should have done more for him"!!!

After all, the fact that he has been alive and with us for 17 years far outweighs the odds they set for him when he was a baby.  He is a miracle.  He is a great teacher of many many lessons.  He receives love so willingly and looks at you with eyes that are deep and probing and gentle.

My life is completely dedicated to Daniel.  Yes... don't get that wrong... Yes I am dedicated to my entire family, however, they have abilities and independence.  Daniel however, needs someone to be his everything.  To arrange everything.  To monitor, everything.  To manage everything.  That's me.  Julie Hasselberger.  I am Daniel's Mom.

Did I do enough for his birthday by surrounding him with balloons and taking him to the mall?  I don't know.  I don't know what "enough" is for Daniel.  I just know that I love him so very much.
So what, it was quiet.  We heard from Glen Schallman, with a lovely "Happy Birthday" song, and from the teachers and kids at school, who also said Happy birthday in a video.  His best buddy visited.  And on face book probably a hundred Happy Birthday Daniel wishes, but he can't read, so I have to read them to him.

He is 17 years old.  For me...  its incredible and I want to shout it out loud to the world.  But it seems as though over time, as special needs children get older, the world just isn't listening anymore.  The world has grown weary of helping, hearing, caring, being there.

THAT is why Daniel has me.  I will never stop being his completely devoted Mommy.  Everything else takes a back seat.  He matters the most.  And my role of Mommy to Daniel, AND Sarah, AND Thomas, continues to remain the focus of my life.  I wouldn't choose anything else.

Special needs children rarely have friends.  When they have a birthday, it seems as though each year people care less and less.  It was so quiet on November 22, 2014.  But, Daniel turned 17.  And he smiled alot.  He knows we love him.

Life is just that way.

Watch this video from our you tube channel, "Julie Hasselberger"  Daniel...goes to the bone doctor, every day is a new adventure.

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.