Daniel returns to school... August 2012

August 30, 2012

Here I am again..

After an unsettling issue with the Newtown school system making unapproved changes to Daniel's IEP.   I was able to get the school system to reverse what they did and restore Daniel's nursing services.  I don't really understand why they thought they could get away with taking away his nursing program...but they didn't.   Thankfully we did not have to retain an education attorney, but the mental stress this put on me one week before school began was definitely unnecessary.

And happily, Daniel was able to get on his special wheelchair bus on Tuesday and attend school.  Daniel is NOT mainstreamed into regular school.  Technically, I guess, he would have been a sophomore in high school by now.  But he attends a special program called STARR in Newtown's 5th and 6th grade school.  It is comprised of special education teachers, therapists, and nurses.   And even with all the help in place, we still have to be ready at any moment for the next phone call to come regarding sickness, or problems.

Really, the concept of school for Daniel is kind of hard to wrap your brain around when you are used to the traditional way of life.  He has no "grade"...  he just goes to a program where he can do his "thing" and apply it to educational topics and activities.  There is no true way to measure what Daniel knows and doesn't know...although we try setting goals for progress. And sometimes he meets them.  Using an IPAD at school, was a great idea...  as was the eye gaze dynavox system.  The important thing is that he is healthy, safe, and stimulated.  Most of his day is spent in variuos therapies (speech, Occupational, Physical) but he does get to go to the typical classes like music, art, and gym.   Its been a good compromise to give him some peer intervention.

Daniel's first day of school and new bus!

Checking out the new bus...very curious

And off to school he goes!!

Brother Thomas is in 6th grade this year, and his classroom happens to be right underneath Daniels!  Yay!!



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.

Happy Birthday to Me...

Today is my birthday. Before having Daniel I had always thought that all of my education would have launched me into a great career. But instead, I was launched on a different journey...one of self-less compassion and unconditional love. Caring for Daniel is a crazy road....and the world certainly continues to take from your resources 10 fold. I don't know why... 


I need to survive, my son is so fragile, and my children deserve to be secure.   Sarah and Thomas are so amazing too.

Today, July 27, is my birthday and my gift to myself this morning was a snuggle with Daniel. Realizing that in those morning moments he needs me for not only for physical needs, but also for love.

Perhaps today will be a day full of miracles...a day where the pressure comes off... but birthday or not I still have doctors to call, and medicines to order and pick up, diapers to change, and tons of laundry to do.

This morning Daniel was happy one minute, and retching/vomitting the next. And all I can say is... keep trying....keep trying...keep trying....


I am going to enjoy some cake and take a few minutes to reflect on my life...  and how far we have come.   So much to be grateful for.  

Happy Birthday to me.  Cheers!!!!

When still legs meet the water.

There is something quite magical about taking a child with spastic quadraparesis, out of a wheelchair and bringing their non moving legs into the fluidity of the water.  Therapeutically it goes without saying, water is very healing and effective for range of motion and exercise.   Thankfully this summer, the warm weather has made the town pool at Treadwell Park warm enough for Daniel to tolerate.  He is getting tall, and heavier...and we find that we have to take turns working with him in order to give our arms and shoulders a rest.  Seeing how much he loves the water...  is such a joyful thing...  priceless moments as they would say in a VISA commercial, right?

Summer has been warm and cheerful this year, with Daniel receiving a hefty daily dose of additional phosphorus and calcium supplementation to really build up his bones.  We are still waiting to see how much improvement in bone health and strength has been achieved, but just seeing him kick and thrash and throw his body around in the pool....convinces me that there is quite clearly some degree of strength improvement.

But even the pool, as much as he loves it, is risky business.  One swallow of water will go down into the airway and cause problems with breathing so we have to be very careful not to ever let the head go into the water.   NOT always an easy task.  Sometimes even a splash from a nearby child can land in his mouth and cause a rattle of congestion.   But so far, no respiratory emergencies.  Watching the children flinging themselves off the diving board...or swimming underwater to retrieve a diving toy...I wonder if they know how lucky they are...but some things are just assumed...  motor skills... check...moving on.

I've been telling myself every single day, that a positive heart has to take control. And that as a strong woman and Mom...I will find a way to get through all of the ups and downs...  we've come this far.  Its a story of triumph, of compassion, of people helping people, and of never giving up on my child.  Never giving up on my family...and giving them what they need.  It is not easy....and quite frankly...more like a war than a struggle sometimes.  

Today is July 24th.  I have been looking for a job but have had absolutely no luck.  I am studying to take my property and casualty exam but that will take alot of time.  I am always on the look out for some grant, program, part time opportunity, anything that will help bring in funds.   Here is where I deep sigh at myself.  The piles of issues are still there, like a big thick wall that encloses me.  Every day I pray with all of my heart that this will be the day a miracle comes our way...  that somehow God will continue to shine his light on us.    

We are a Mom, a Dad, and three kids.  And Daniel is the one kid who needs 100% of our attention, 24 hours a day in order to keep him safe, healthy, happy, and lets face it... Alive.    That degree of attention steals away from making money and being prosperous...because 1) our expenses are ridiculously always increasing for him and 2) my career aspirations have been stomped on because I'm out of the work force for 10 years now.   I have an MBA and they all tell me, no thanks.

So there is some solace in the warmth of the sun, the ability to swim and be together...  God has blessed our family since June by bringing us closer together... and that has been wonderful.  

Daniel is a quiet, non verbal, teenage boy with big wide eyes studying the world.  I can only imagine what it must feel like for him to be immersed into a swimming pool!!!  You can feel happiness just radiate from him.

 Daniel is in Special Needs summer school until August 9th.  He is receiving physical therapy, occupational therapy and speech therapy there.  He is also receiving physical therapy and occupational therapy at home. We are doing everything we can to keep his scoliosis flexible and keep his positioning safe.

The Ford Pinto Wagon...and Summer prayers

Prayer for finding employment

Heavenly father, please sustain my spirit as I search for new and meaningful work. You have blessed me with a healthy body and a keen mind for which I am grateful. I ask that you open my path as I seek employment that will allow me to support my family and myself while serving others and your divine purpose.

In gratitude and grace, Amen.

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Prayer for prosperiety

Dear God, source of Love and Life who brings abundance to all,
Please bring prosperity to me and my family now.
We ask that these basic needs be filled:
Money to pay our bills,
Income to meet our mortgage (rent),
Enough to feed us healthy food,
More than enough for health care and wellness...
And especially to sustain and care for Daniel

Beyond the material needs, please uplift our souls.




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Today is Thursday July 12, 2012.  Its been hot, and sunny and practically perfect summer weather here in Sandy Hook, CT.   Schedules are hectic, but boy would it be perfect weather to take a picnic and head to the beach for a day.  I remember as a kid, we always used to picnic and do day trips for our vacations...it was fun, and it was all we knew back then.

But raising a child who is medically fragile, and can't walk, and needs medication around the clock, and can't talk, and is heavy to carry, and has seizure risks, and severe scoliosis...poses alot of complication and compromise to what could be a normal active summer for our family.

I sometimes sit and reflect on the things we could be doing if we all were healthy and normal...what would it actually look like???  How would I be as a Mom?

And the reality is...  that's not the plan that God had in store for us.   So we have to try and work around the complications, and do the best we can to make things fun and find joy.

I have been experiencing daily anxiety to high degree about Daniel...and what needs to be done to correct his spine.  And I wake up sweating and scared.  And in order to calm my storm I do deep breathing exercises, and I pray.  

Then the next day I will start having anxiety about finances and finding a job, and the same things happen, sweaty and heart beating fast and worry about the future....  and I find time to calm the storm again, and pray Prayers like the ones above.

Daniel on an adventure...  thank GOD for handicap parking spaces.

This road we walk is not paved and smooth.  Its bumpy and full of wrong turns, and giant hills, and riddled with pot holes and problems.  But there are really only two choices.  Stop.  And give up.  Or just keep on walking.  Keep on trying.  Keep on moving.

That is why I do what I do.  I love my family....and I would go to the ends of the universe to help them.  But Daniel...  Daniel is so different.  

I am his ears, his words, his touch. I am his breathing, his eating, his moving.  I am the key to his life and his sustainance and he can not survive without 24/7 attention.

That is why I reach for help.   Because if you cant do that....what's the point of having community and family?  We help eachother, we love eachother, we support eachother...   we give of ourselves, through our words, actions, prayers, and deeds.   That's how I was raised.

On those hot summer day trips to the beach as a kid...I remember being packed into the back of a little Ford Pinto station wagon...we had very little money.  But somehow back then I didnt know that, I just knew that we were getting out of the apartment and going somewhere fun.   Life seemed so simple for me, and I know now that it must have been so hard for Mom and Dad...but they never shared that worry.   

I think our wagon looked something like this...  ours was a copper color!  Good times....Growing up in the 70's

We just did the best we could.   And praise God the three of us were healthy, happy, girls....

What are you doing this hot summer?  Maybe you have the money to take your kids on a cruise, or to Nantucket for a month, or put them in summer camps, or maybe, just maybe...  you can only afford a trip to the zoo...or a movie here and there.     Wherever your adventuring spirit takes you...  please remember as your kids run freely on the beach...that many kids will never be able to run freely on the beach...   remember how blessed you are.  

I am Daniel's feet...  I run on the beach for him.   He smiles in the breeze and sun as he watches.

Julie Hasselberger

Rolling Into Summer...Blog entry July 8, 2012

Summer...  July 8, 2012  My Blog for Today.....

Today is Sunday, July 8, 2012.  It's been a hot summer so far...pretty much everywhere I imagine. We were blessed to have the chance to escape to Cape Cod (South Yarmouth) where we stayed at the Red Jacket Resort.  I chose that place, even though it was ALOT out of my budget because it had wheelchair accessibility, close to the ocean, and enough room to care for Daniel while also providing a nice place for Sarah and Thomas.


Thankfully, we returned on June 30 healthy and without any "events" such as vomitting, seizures, fevers, or periods of handbiting and crying.

Daniel resting after a good swim with Mom and Dad

Now comes the task of dealing with real life again for the rest of the summer.  Who doesn't like escaping "real life" for a while.  Real life is the equivalent of worries about Daniel's scoliosis which is worsening, worries about his bones which are demineralized, worries about where the road is taking us next with him.  He had tests done this week, and saw his gastroenterologist...and we are waiting for tests results which will go to the surgeon and the endocrinology team (bone doctors!) for some direction as to our next step.


Yesterday, Daniel cried ALOT and was hand biting.  Looks of pain periodically on his face, and if it trends, I will have to do my due diligence to find out how to help him.

Enjoyed so much the ocean breeze on his face while we took walks. Priceless smiles.

Real life is coping with a house that is falling apart, cars that are on the brink of failure,  a fat folder full of issues to resolve/research/study/call about, continue job searching (which has been SO FRUSTRATING), and pray that somehow some miracle will happen that will put us in a better place financially.  Isn't that always real life.  For so many people....  I know.   But the hard part is raising this child who has so many medical risks and medical problems...and also try to care for Thomas and Sarah.  OH MY GOD...Sarah is going to college next year.

Thomas, Daniel and Sarah

I wake up in anxiety, pray for faith and calm...  and go through my daily routine.    


Back in June I went for an interview at Danbury hospital!  It was GREAT.... for a Patient Access Liaison.... part time.  I had a very good interview, passed all the computer tests, and was told I would have a second interview the first week of July.  I thought, finally...  something to be flexible around the nursing schedule that pays well...  WELL...  that died when I got the canned rejection letter via email on July 3.   Ugh.   I have so many qualifications, an MBA, years of excellent work experience...  but yet everything I attempt hits a wall.  So I have a ten second funeral, and keep on trying.  


All the while, always worrying about Daniel...always managing his medical needs, always worrying about the bills, and daily having that prayer and self talk about BE POSITIVE JULIE, FIND A PLACE WHERE FAITH COMES FIRST, TRUST IN THE LORD.    And...it works, I feel better, and I keep on going going going.

Watching his brother ride a go Kart...probably wishing he could ride too

I know in my heart, somehow, that a miracle will somehow happen.  Someday.  Perhaps it will be a breakthrough in health for Daniel, or perhaps it will be a good job offer for me, or perhaps it will be a wonderful financial gain to support us as we deal with this challenge.  


Like a track and field athlete, we just keep hurdling, vaulting, and continuing to run the marathon. Wondering when the time for rest will finally come.  Believing that all of this is happening for a reason.    Believing, praying, focusing and living with so many unmet needs.

He watches and studies everything around him.  He can not speak, but he uses his eyes to learn about his world.

You can clearly see the leaning from the Scoliosis in this picture. This becomes painful for him.

Getting upset... needed diaper change!

Exhausted, He snuggles in his favorite position...

What really matters most at the end of the day????

Father's Day and Swimming

Daniel has been doing well...  so far no illness or setbacks in our quest to quench his weak bones with phosphorus and calcium supplementation.  He will have blood work at the end of this week to see how much  progress has been made....and the surgeon for the scoliosis surgery will consult with the bone doctor (endocrinologist) to see when surgery will be possible.

Still having alot of doctors appointments, and dentist appointments and normal daily life.  Dealing with insurance, and equipment suppliers, and wheelchair repairs, and lift van repairs, and medications (oh my Gosh so many prescriptions) ...  its a jumble of non stop multi-tasking.  

Throw into this salad of life....  managing the life of a soon to be senior in highschool and a soon to be 6th grader...a house, and trying desperately to earn money with whatever spare part time work I can find.  Its a recipe for insanity.

But one saving grace has been the YMCA of Brookfield. They have a financial scholarship and we have been able to take Daniel to the therapy pool there several times a week to swim.  He loves to swim...his body responds miraculously to the water.  

This is the last week of school here in Newtown, CT... it officially ends this Thursday the 21st.  Then what?

Mommy anxiety is still at all time high...because just when I seriously start considering going back into Human Resources (which is not my desire, but my backgound) they all tell me ..."sorry, even with a masters degree and 15 years experience...you've been out of the workforce for 10 years and we wont even look at you"    Its kind of humbling, because you work so so so hard to become the best and the brightest you can be...and then you have to go away to be a full time Mom to a disabled boy...and BOY with that comes more advocacy and intelligence than ever.  But they won't even talk to you.  WHAT IS THAT!!!!!

So I  keep on going... taking care of these kids.  Praying for miracles. Praying for daily strength and good health.  Many blessings are here...we just need to see them.  Here are some pictures from Daniel's swim on Father's Day with John.  Swimming with Daniel is a great joy for us...

Spring has given way to summer...already

Today is May 30, 2012. The end of May..and its already hit 90 degrees..  Daniel's air conditioner in his little room keeps him cool and comfortable and breathing well. (while the rest of us sweat to death)

So many things to be grateful for...  I have to mention the luncheon we were invited to on April 29, in New York.  Carl Banks was the guest of the luncheon, and he signed autographs and t shirts.  A friend of mine, Marc Pintel has a non profit called Pintel for the Homeless, and he invited several local charities to attend, but also included Daniel and our family.  We were very honored, and it was a very nice day.  Marc presented us with a check towards Daniel's medical expenses and treatments.  It was very special to have someone reach out so unconditionally to help us.  And it was very cool to meet Carl Banks too!!

And then, in early May I was invited to the Mother's Day luncheon of the Molly Tango Foundation.  What a wonderful annual event they have to raise money for the foundation which helps disabled children and their families.  Currently, they have helped us with expenses related to the maintenance on Daniel's van..new tires, lift maintenance and badly needed lift repairs!!     The Molly Ann Tango Memorial Foundation continues to grow in its giving throughout the Ridegfield/Danbury/Newtown/Bethel ish... area..   So amazing...  these people....

And here it is...  as I sit...and think.  The end of May.   What is going on???   Well...

Daniel continues to have intense supplementation of calcium and phosphorus and will have tests done in about two weeks to see if there is an improvement in his bone strength.

He has been gaining weight, up about 5 pounds...  but at the same time his Wheelchair is getting too small, his braces are getting too small, his CLOTHES are getting too small.   This is a blessing and a financial curse.

Daniel is swimming again, thanks to a scholarship at the Brookfield YMCA which allows him to have a membership for swimming in the therapy pool.  We have a dream of being able to have our own therapy pool.....but of course that is just a dream....  but he loves to go and swim.

Summer is just around the corner...and my brain is full of a million issues to resolve and things to do for my children.   But with Daniel the management is at a greater level...  equipment, therapy, school, medications, appointments, supplies, and it cycles...     His scoliosis is worsening...  the curve is very evident when you look at him.   We just pray that Yale Endocrinology can help us get him stronger....because surgery is inevitable.

Out of the rumble and chaos  that goes in my mind daily, as I try so hard to keep things going and keep things taken care of...   comes a grateful heart for the people in my life who continue to help us with Daniel... teachers, therapists, nurses, friends.......  so many people just adore this boy who calls me Mom.

He needs so much....and he asks for absolutely nothing, except a smile.

Praising God for the goodness in my life and that his blessings will continue to pour out upon our family.

Happy Mother's Day 2012

I had a very nice Mother's Day. The family made me breakfast, and showered me with pampering gifts.  Even Daniel made homemade Lavender Body Scrub at school for his Mommy.  I spend so much time engrossed in thought. Thought about Sarah and her future and all of the things she needs me to do.  Thoughts about Thomas and his activities and how to best enhance his young 11 year old world.  But Daniel is on another level all together.

Daniel requires around the clock attention.  And now, he is under close supervision of doctors because his bones have been found to be demineralized and they are treating him with calcium and phosphorus to strengthen his bones.

His spinal fusion surgery needs to be done. But can't be done...until Fall...  which means a summer of trying to make this very curved boy comfortable.

I'm budgeting, managing, cleaning, calling, emailing, reading, organizing, and DRIVING places all week long.  My health is suffering too right now....but I find that I can't pull myself out of the depression long enough to motivate myself to care about myself.  There are simply too many people who rely on me.

Which makes it a form of irony....because if I don't take care of me...who will??    My Mother's Day gift to myself is to try...to really try...  to focus on becoming healthier.  Despite the criticism, skepticism, and calculated  pain...  I have to look the other way and realized that I am important.   That I matter to my children....and it's time to teach them how to care. By caring for myself.

What a concept.  Most Mother's of disabled kids can probably relate to my world...to my loneliness, to my feelings of being a person who has lost themselves completely.

Its not so easy to find yourself again when the negative world stomps on your dreams.  But it is possible to take baby steps towards the direction of your dreams...while still being the best Mom you can be to your children.

Even taking the five minutes to blog today....  made me feel like I've patted myself on the back.

Now ....back to the hardcore reality which is Daniel's medical issues!

I hope all the Mom's that read this post....had a Happy Mother's Day!!!  There is no greater gift than to be a Mom.

Julie
5/14/12

BONES and a Pile of challenge

The latest news regarding Daniel's spinal fusion is a problem that has come up...with his bones.  I received a call from Endocrinology telling me that his bone density tests are poor, and that his phosphates in the bones are low.  He needs to have a series of tests, and then some kind of therapy for the bones before we can even schedule his scoliosis surgery.

Will there ever be a time in my life when things are not so complicated?  It just seems like one issue blends with another issue...then something else springs up...and I am chasing my tail in circles like a crazed dog!

This week was April Vacation and Daniel's Spring allergies went through the roof!  Itchy eyes, runny nose...just miserable.  He needs that like another hole in the head. But one more thing to manage is just one more thing to manage.

As I reflect now on what is coming up it seems daunting.  The process of helping Daniel to gain weight, to strengthen his little bones, to keep his allergies in check, to prevent him from aspirating saliva, and on and on and on.  

And yes...I have two other children who need me as much as any child needs their Mom. But I have an unequal attention span....  call it... another challenge to add to the pile.

Hoping that the "GoFundMe" account will start helping with fund raising...its so hard for me not being able to work.  I feel like I'm losing my flipping mind trying to pay all the bills...and budget for the unknown crazy future.  I keep praying that somehow we will be provided for...so that we can focus on the pile of challenges.  But the financial crap just heaps right up on top...pressing down...  unrelenting.

And I think again to Daniel's skinny little legs and arms...wondering what we will do if he is too weak for his surgery.  That is a reality I can't quite sink my teeth into....and my head is still spinning the Vertigo.

Please, if you read this, say a little prayer for my sweet little 14 year old angel that his body will be strong enough to make it through spinal surgery.....even to make it TO spinal surgery.

*****   On the subway, when I took Sarah and Thomas into the city last Friday....a man and his friend were singing Bob Marley... "No woman, no cry"... " everythings gonna be alright.  everythings gonna be alright"  and I've been keeping that tune going in my tired head.

Vertigo

Currently waiting to hear back from the surgeon regarding the date of Daniel's much anticipated spinal fusion surgery.  Not surprisingly, right after the meeting with the surgeon I felt tremendous stress and anxiety. I'm terrified, because its their job to lay it on the line... here are the risks...  1.) We could lose him.   OK...that's enough for me.  You got me scared. But alternatively, if we don't do the surgery, his lifespan will be shortened. OK. now what choice do I have?  Let's put it into God's hands and keep praying.

Right now I'm suffering from what, apparently, is called "Vertigo"...and I am so dizzy I can't function like a normal human for a few days.  I feel like someone just spun me in a thousand circles....the room spins....and I end up feeling nauseous.  Worrying.  Wondering.  

So many needs.  So many pressures....  my world is spinning....literally.   The kindness of others and the support of community has kept my hopes high that this too shall pass.  There will come a day again when things make sense and there is time for relaxing.   I had a dream last night that we were in Florida....at Lovers Key...collecting shells along the shore....warm sun and nothing else but the smell of the ocean and the sand in our toes.

We have a place to go, a wonderful place...a family member has a wonderful condo and her generous heart lets us use it.  IF we can get there.  And I just wish there was a way to get Daniel down there for one last trip before his surgery.  One last trip to swim and laugh in the warm Florida water.  One last escape from the reality of ALL the crazy pressure that has started to degenerate my health.  Warm sun and just "whatever"....  

Maybe a miracle will happen.  Maybe somehow we will find a way to get down there with Daniel....  Maybe then we will be more emotionally ready to face the risks of this very tricky surgery.

As I sit here in my state of vertigo and feelings of motion sickness....I can't help but wish that they were real motion sickness...on a plane...headed for Fort Myers Airport.