Special Needs Mom's 2014 Goals and dreams, bumping the track of stress

Yeah, so here it is. HAPPY NEW YEAR. 2014

Time to "start the resolutions"

When is minus 2 degrees outside the air hurts to breathe. I don't dare bring Daniel out because he doesn't regulate well.  So its winter and I get it.  We live in a place that is horrendously expensive and has weather that gets too cold to function in.  I wonder how many days out of the year I keep Daniel in the house to protect him from the elements. Probably alot.

The Holidays are over.  They were remarkably uneventful and relatively normal.  It goes without saying that the out going nature in me misses going to Christmas parties, out for dinners, and just doing fun things.  The big event was a trip with the kids to see Frozen.  Daniel really deserved to get out of the house and it was New Years Day.  That trip cost me $47 plus another $20. for food and that was WITH a free coupon for popcorn.   It is incredible to me to that many people go to the movies all the time.  Now, I LOVE movies, but have to watch them when they come to cable.  It's cool.  I almost never can get away anyhow.

Keys are falling off.

Crashes all the time

The holidays are usually a struggle and half ($$$).  This year we managed to get the kids a couple of things that they really wanted, but not everything.  It seemed like they were happy and satisfied and grateful.  Then there was the mysterious IPAD that was shipped anonymously by one of Santa's Elves to Daniel right before Christmas. The person sent it anonymously.   He loves it, and uses it for hours and hours.  The pay it forward, "acts of Kindness" runs rampant in this area.  I am so grateful for that gift for him, because there is no way we could afford one.  In fact, my laptop is an 9 year old Dell Inspiron that is slowly dying.  My dream lap top is a MAC book, because I would really like write more, and publish more videos.  My new years resolution is to become better at video blogging and making interesting videos.  However, it is virtually impossible on this old clunker.  My laptop is missing the R key.  What I type, I have to press ten times hard where the R used to be and it works.

Live to dream

I'm dreaming of a MacBook

Live to Dream

I don't know what to say about my goals and dreams.  I have them. Such as the big one, enroll in an RN accelerated program, start working out at a gym again, write down more information and ideas about how to take better care of Daniel, become a better wife and mother, get healthy,  and get myself a new lap top, and a new sophisticated video camera.   And I have already started the number one goal, which is to get my butt to church more often and make Christmas bigger than just the holiday.

So it sounds like its feasible yes?  It would all be perfect and I could be happier and healthier.  My kids especially Daniel would have a better life because I could provide more. I would have self satisfaction and self esteem improvement.  I would develop a new career that I love which would be flexible, that I could take with me to Florida someday. (SOMEDAY I DREAM)   I would look better.  I would sleep better.  I would have technology at my fingertips and it would allow me to do so much more for my family and for others.   So one of the biggest prayers I have, is asking God how can I get to this place when I don't have a

penny to my name.  The financial pressure and stress sucks my cash, and my energy. I have an insurance license for property and casualty but I completely dislike selling insurance.  I'm sick most of the time.  I am at least 70 pounds overweight.  The gym cost too much money.  Walking is ridiculously out of the question on a consistent basis. (um minus 2???)    I have zero credit because we are still dealing with serious issues from past debt and medical bills.  My cars are falling to pieces, well, mostly the Windstar.

This, my friends, is just an example.  Have a goal, hit a wall.  Have a dream? Feel it die. Want to progress? It all cost money.  But the real hard part is Daniel.  Daniel could be enrolled in swimming programs and be stronger. If I could afford it.  Daniel would have better therapy, and would go to external programs that would help him stand better, get stronger, move more.  Daniel would have more technology and more time for learning.  Daniel would be 100 times more advanced than he is, if I just had the time and money and health.   I look at him sometimes and I feel sick to my stomach because he has so much potential to do SO MUCH more and I just can't get to that point.

I DONT KNOW HOW TO CARRY DANIEL ACROSS THE GAP!!!!

People let me tell you something, it is not a cliche or a robotic repetitive whine when I tell you that I want so much for my family, my children, my life, my marriage, my community, my world.  But raising a human being who is 100% reliant on you for their complete life and needs, is a BIG DEAL.

All of the things I dream for.  Wish for. Try to plan for. Fall tragically by the wayside because the resources are so lacking.  Just paying the basic life expenses is rough.  You want to stay in your house? Well, yes, I do because the schools are outstanding for Thomas, and Daniel is still a part of the schools, and we couldn't sell it if we wanted to anyhow.  Plus it is modified for accessibility, partly.

Hear me. Please.  I have goals that to many would simply be the swipe of a credit card, done.  The writing of a check, there you go.  But I am stuck in a perpetual rythym of stress that prevents any of the next steps from progressing.  It's about money.  It's about health.  It's about exhaustion from trying.

My blood pressure is high now, and I am on a pile of medications for "stuff".  It's ridiculous because our medical costs are rising for Daniel, and for Julie.  It could be the other way around.  Yes.  A laptop, the mortgage, a reliable car, a new education, a commitment to health, and I will say, etc.   Yes my world would flip upside down if I could break the cycle.

But how do I do that?  How?  SuperMom only has so many waking hours.  Every penny is needed just to feed us and keep us warm.   How do I grab those dreams and push forward for my son.  FOR MY SON, when I can't even get credit enough, or a loan, or a job.   I rattle and shake myself trying to figure it out.  They say "you are doing such a great job taking care of Daniel Julie."  Thank you, I say.  But in my head I think NO.  NO I'M NOT. His hamstrings are tight, he needs to be in water, he needs to do more, see more, learn more.  There are thousands of things I could be doing for him.

And all I can do, is take a nap, and pray that my debit card works because I need to pick up prescriptions.  Perhaps there is a helping force out there that could bump me onto the track of my dreams and goals.  I was there once in my life.  Bump me into a place where things are possible, and my enthusiasm and hope returns. Perhaps in a Dr. Suess kind of world I would find someone to lift my dust spec up and save me.

It's minus 2.  My laptop just crashed twice.  My pointer finger hurts from hitting that R key.  I have stress because of the above mentioned things and I am going to spend the next hour trying to destress and get my blood pressure down.   Sigh.  Where is my bump to my dreams?

Daniels Finger Print Tree

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.

Pools and the ADA

Earlier this year I began a search for a place on Cape Cod for us to bring our family.  Now, mind you, the location had to have wheelchair accessibility.
After about 25 calls to resorts and hotels, I found one place called the "Red Jacket Resort" in South Yarmouth that stated they were "wheelchair accessible" and had heated pools.   The manager did call me back and stated, with an uncomfortable tone in his voice that they DID NOT have pool lifts in order to get a child into the pool.  This is supposed to be a family friendly resort.

We decided to go anyways, because John can still carry Daniel into the pool and we figured it was only for a few days.   But Daniel is fast growing heavier, at age 14, and soon we will require pool lifts in order to get him into the water.

The pools may have been heated, but they felt cold....and Daniel shivered like crazy.  The resort had absolutely no wheelchair access to its beautiful beach..and all Daniel could do was watch from a distance.

We enjoyed ourselves, but found the Cape was not a friendly destination for children in wheelchairs.  I just came across an article which really tripped my anger at the fact that every place I called on the Cape DID NOT HAVE PROPER ACCESSIBILITY FOR DISABLED AND/OR WHEELCHAIR BOUND people.

From Parenting Magazine.....

It’s the kind of news that seriously ticks you off when you have a child with special needs, but it’s the kind of news that should perturb anyone with a heart.

By March 15, hotels and city recreation centers with public pools and spas were supposed to install or order permanent lifts, or get pool ramps, to make them accessible to kids and adults with special needs; the lifts alow them to transfer from wheelchairs into the water. This accessibility is in compliance with the Americans with Disabilities Act (ADA). The deadline got extended by two months as the hotel industry and Congressional reps resisted. And now, hotels and places with public pools have until January 31, 2013 to comply.This means we’re headed into one more summer that countless kids and adults around the country won’t be able to use their local pools. One more summer when parents will struggle to carry their child with disabilities into the pool because there is no other way, or give up and not go at all.

According to an article in the Los Angeles Times, pool manufacturers say the law applies to about 256,000 pools and spas around the country; only a small percentage, they estimate, are equipped with lifts. Even more mind-boggling is the resistance the accessibility legislation triggered. The American Hotel & Lodging Association urged members to push for a delay in enforcing the ADA at pools. Meanwhile, on March 14 South Carolina Republican Senators Jim DeMint and Lindsey Graham introduced a bill to inherently prevent the ADA from being enforced at public pools and spas. On March 16, Rep. David Schweikert (R-AZ) backed a similar bill.

What were they thinking? Well, as DeMint explained it, the enforcement of accessibility “could lead to increased litigation and heavy fines that could force pools to close or raise fees on families.” His proposal: “Pools with public access should have the flexibility to work directly with people with disabilities to accommodate their needs.”

I’d like to see Senator DeMint stand in front of a child with disabilities and tell him that, sorry, he can’t use his local pool because of concerns about lawsuits.

Of course, it’s important that hotels and rec centers get the right accessibility equipment and have a general plan in place before they comply. But how is it even possible there are any places left that haven’t gotten around to doing this, let alone major hotel chains? As for the hotel industry’s concernthat permanent lifts could pose a safety hazard to children tempted to play with them, the fact is, pools are generally dangerous places for kids. Which is why you are not supposed to leave them unattended.

Surely hotels could figure out a way to make sure kids don’t use permanent lifts as pool jungle gyms. Surely hotels should get a grip and realize that kids and adults with disabilities deserves fair access to its amenities. Swimming is not a luxury; every child and adult deserves the right to enjoy this summer pleasure."

Thankfully our town pool has a lift, its antiquated and manual...but at least they are trying.  Daniel loves to swim more than any other activity.  Resorts and Hotels should be ashamed of themselves if they have not yet complied to this law.

Thats just how I feel.

Daniel. And Water.

This is why I do what I do.  Daniel loves the water.  He can feel freedom in the water and when I swim with him I sense that he can use his entire body and not have the limitations of gravity.  

I had him in Aqua therapy for a long time with Angel Fish...but could no longer afford it.  Now I am the therapist..and he seems ok with that.  At least he swims.

Water is magical.  I don't feel right unless I'm near the ocean.  I don't know why.  I miss Naples Florida desperately because there...we can swim every day... multiple times a day.  I long for a chance to bring Daniel back to a warm climate.   Sarah and Thomas like it too...

Here are some pictures of Daniel in water.  All that I do...I do for him.... to provide him with the simple things in life that so many people just take for granted.

I dream of the ocean at night... and being near water.  Someday.  Someday. We will be able to do this every day.