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.

I fell in love and got to visit that place June to July 6 2013

July 9, 2013  A love story continues

In a moment that consisted of 12 days, we escaped the North and retreated to a place so far South that nothing is the same.  The air is different, the plants are different, the water is different, the roads are different, and the people are different.   No we do not spend any money on a luxury deluxe vacation, but rather we have a family member with a generous heart who opens her Florida home to us.  And this is the most awesome thing I have experienced.

 I fell in love with Florida many years ago. Probably the first time I submerged myself into the 85 degree still waters of the Southwest Gulf coast.  Or the first incredible sunset that spilled its glory across the water and slowly dissipated leaving hues of pink and orange and purple until it finally brought the darkness.  The sound of the cicadas, the crackle whisper of the Palm Trees.  So many different types of Palms.

Hitting the water for the first time since his Spinal Fusion

When I take Daniel out into the world, to the stores, beaches, pools, movies...everything is easier.  People are kinder.  It is ramp and elevator heaven!  And its certainly clear to me why people choose to retire there.  Life feels gentler.  Protected.  Structures left vacant for the summer securely protected with Hurricane shutters.  Homes elevated off the ground.  And not a wooden structure to be seen.  People know that the storms could come.  And yet, they take the risk and protect themselves in order to have the lifestyle that is conducive to healthy living.

We flew Daniel down to Naples, FL on June 25 (compliments of a generous gift) on JetBlue.  I had planned meticulously what the travel would entail and have bags and supplies packed and ready.  I had shipped down cases of diapers and made sure I had all of his medications because in Florida they don't take Connecticut state insurance.   We got to the airport, and Daniel, as usual boards first.  We always sit in row 1 E, and 1 F (Daniel and I) and the others sit back in the regular seats.  Daniel no longer "slumps to his left".  When we put him in, buckled him up, he was straight and tall.  My teenage pal.  He is tall enough to see right out the window, and focused enough to realize he has a TV right in front of him.  He is very aware and physically reactive to the sensations of the plane.  The sound of the engine, the air from the vent, the whirring of the engines as we climb into higher altitudes.  He holds my hand, or my arm.  And he never stops touching me the entire flight.

We leave the dusty, loud, stressful, high traffic, chaos of New York and land in Fort Meyers.  Southwest international airport.  As we emerge from the plane, gentle music is playing.  Bright light shines through clean windows upon clean floors.  Giant whimsical Dragon Flies adorn the walls and there are brightly colored gift shops with beachy themes.

Daniel's face explodes into a giant smile...  because its kind of like the Mall I guess.  But he knows we are not where we started.

And then we go outside.  Hot tropical air floods our lungs and we see giant Palm trees and flowers.  It takes but a few minutes to gather the luggage, the rental van...and we drive out down route 75 towards a new experience of sights, sounds and feelings.

Within two days of being at the BeachWalk Condo, Daniel's congestion has completely disappeared and I don't have to use the Nebulizer.  My skin is already browning.  We are relaxed.

Watching the look on Daniels face, the first day...as we put him into the pool for the first time since his major spinal fusion surgery, is just an awesome experience.    And in the video I hear myself saying....  "THIS IS WHY WE DO IT ALL"

There is something magical on those white powder beaches that just calms me to a place where I can let it all go away....  and just take a Noodle, and float in the water watching the dolphins playfully swim up and down the beach.

Daniel is very much a welcome guest everywhere we go.  He fits in, and he is certainly very endearing.   If he is relaxed, I am relaxed.  And everything just fills in around us.  Warm water, white sand, blue sky, palm trees, .....    Could I someday find the financial means to move him South?  To give him a climate where there is no prison called snow?    I think so.   I believe God has a plan.  My grateful heart misses the South every time I have to come back to Sandy Hook, CT.  But this too is my home.

I am, however, in love with a place where health and quality of life, positive smiles and peaceful hearts shines from every bronze skinned smiling person who stops to chat with me.   Good times.