Father's Day Cards All Around

The boys and I took advantage of an event with PIC while John was working very long hours.  Off to Hope Hospice in Fort Myers for pizza and art. 

Surely all of you are jealous that we spend our social time in a hospice conference room!  It is not exactly social since all of the other families attending spoke Spanish only, if they did speak English they were not going to share it with me.  No, not exactly the outings I envisioned with my children.  Nonetheless, I am grateful.  I do confess I may not make the trip again unless necessary before the evaporator is fixed on the jeep.  OK, I'm actually about to make it again and farther for Riley's PT and a wheelchair repair.  The boys made no complaints as the sweat dripped off them and a thunderstorm threatened to soak us all.  The relief of having someone capable feed Riley for just one meal motivated me to make the drive. 

As I ate quietly and watched the boys, I contemplated how important even these few moments are to me.  Without having these few moments of occasional respite somewhere beyond the parents spelling each other helps maintain sanity. 

Riley was so happy to be with Miss Debbie P. for awhile he laughed heartily for several minutes.  A group of FGCU students, belonging to P.A.T.C.H. (Project Art Therapy For Childrens Health, coaxed Ronan to take on a paint project.  "What shall we do?" asked Juan.  "A father's day card," Ronan answered.  Knowing he already had made a card for Daddy I was curious.  Soon it took shape and receiving some help from Maria he had a wheelchair placed prominently on his artwork.  "Riley needs some help with his card," Ronan explained. 

Quite the oversized card... so I leave you to fill in the missing letters.

Ronan is always looking out for his family.  Such a burden to carry for a six year old.  Yet, to Ronan it is not a burden, he is simply fulfilling his place in his family and does it joyfully.  There was no resentment, no frustration, no sadness that he had to fill this void for both his brother and his father.  I sensed only satisfaction from Ronan.  A few feet away Riley laughed again.

No, definitely not the family time I imagined for my future.  It has its sadness.  But we each find some gratification as well, I still have two magical boys and an amazing husband.

We are all special... by Stacie

Note: P.A.T.C.H. will consider events.  For more information contact Marisa at Meschrei@eagle.fgcu.edu.  I also have a few pamphlets to share.

Open the Floodgates

Insulating ourselves against the outside world became a survival necessity during Riley's early difficult years.  Every movement and noise would send him into a meltdown.  We used ever method we could to shut the world out protecting Riley and ourselves against the intrusion of sunlight, noise and people.  The blinds remained closed all day.  A completely ignored sign requested knocks before doorbells and radios, televisions and conversation remained hushed with the goal of helping Riley learn to sleep.

When I accepted CMS recommendation to include our family in the pilot program Partner's In Care (PIC), under the umbrella of Hope Hospice I opened the floodgates.  Suddenly our home was overrun by volunteers, nurses, case workers, music therapists and even personal care service professionals.  It was overwhelming after closing the world out to suddenly have constant visitors and questions.  Today was no different.

There were moments of recoil and panic I sensed after that one "yes" I gave to our CMS Nurse Care Coordinator four years ago.  Fortunately, there have been many more moments of gratefulness for all good these people and PIC have brought to our lives. 

To other special needs families still holding out:  I understand all your reasons and they are valid.  When you can though, please open the floodgates and let the sun and noise come back into your life.  You will be happy you opened those gates.

Anyone else catch the Royal First Kiss this morning.... we managed between Ben 10 episodes:-) ?

Readers, please feel free to share any experiences you have had yourselves regarding your special needs experiences.  I would love to share them... email me at oceanantiquities@embarqmail.com.

Good Friday

It's a day of celebration here.  It's my mother's birthday today.  We are all so grateful to have her nearby.  Just knowing she is close helps keep us just a little more grounded.

 Yes, I do believe this is from the seventies... but it's the one in my computer... low energy remember.  Hmm, it seems that those chops are coming back.  Here's another one from the seventies, Halifax, Nova Scotia if I remember correctly.  Uh oh, are you adding up that 28 yet.

... and Wednesday should have been my parents anniversary.  It's been seventeen years since I lost my Dad.  I remember him every day.  It is these past eight years that I realize I needed him the most.  His perspective and participation in our lives would have been invaluable in all the experiences we have gone through since Riley's birth.  Mostly though, I just miss my Dad.

These past few days I struggled to find time and energy to formulate the next post.  My mission to share the special needs life is laden with emotion.  Then I realized that the difficulty is my post.  This niche post is about special needs and it isn't easy to accomplish everything.  Riley's last illness still hangs on and I have spent many hours in the night comforting him and trying to find a little sleep for myself.

Once the day comes along, I simply go through the motions.  However, there is no end to my blessings either.  Riley is patient and loving.  John always has more to give no matter what he encounters in his day.  We have also found a support system along the way.  Donna Lee dropped in again.  This time to make sure I start on a Pilates regimen ... ouch.  In the past 24 hours, John has had plenty of work, sold a beautiful fossil (I suspect he'll miss that one), sold Arbonne, cheesecake and keflie's.   Both boys are happy to be home for Lee County's spring break.  Yesterday I had the opportunity to chaperone Ronan's class at the Naples Zoo, I do hope he enjoyed having his mom along.  The boys and I all had kisses from Om.  Miss Zita, our temporary Lithuanian PCS from Joanne's House (Hope Hospice,) got Riley all cleaned up and happily traded beautiful vegetables for baked goods - though my intention was for her to simply have them... he feels so much better and is next to me singing along to the music.  My friend Jessica is in town; maybe I will actually go out on the town, maybe...

The days are full of good and bad.  There was a time when all we managed was getting Riley through the night and day... more on that later.  Yes, a lot is happening in the day now.  We muddle through and the energy will return.

Gunk and Change

"Gunk and Change" feels most appropriate to my past week.  However, to "maintain" is often the goal here. 

Maintain: Maintain Riley's health, maintain Riley's schedule, maintain Riley's meds, maintain a healthy environment, maintain Riley's flexibility... these and more take much of our time and energy.

Change:  Change this week has been a little sad.  Many, many wonderful individuals enter our lives through Riley.  This week we say goodbye to two of them.  Goodbye to Riley's PCS from Hope Hospice, Miss Sandy. She is moving on to try new things in life.  We wish her every success and are proud of her for taking this leap!  Goodbye to Miss Krystal.  Riley's substitute bus driver stands out as the most caring driver (not to say the only caring driver:-) we have ever experienced and the only one to actually "maintain" and have repairs (that have existed there for years!) made on #27126. 

Gunk: Yep, there's plenty of gunk around here, however I've just discovered a necessary gunk.  We returned to Physical Therapy with an eval this week with the adorable Miss Emily and her latest FGCU intern.  She recommended I stop by The DME Shoppe on the way home for address our wheelchair issues.  What a great reception to drop in unexpectedly to a shop where I haven't been in months and immediately hear from Miss Jessica "Hi Stacie, how are you?  I'll get your notes about the head rest for Riley."  They know they're customers.  Marcie came out to greet Riley immediately and make adjustments to his chair.  Checking over my last email, she knew all the issues.  A spray was applied to the runners and already the chair moved smoothly.  "What is that?" "Gunk."  Thanks, I'm thinking, how do I know what to buy in future?  Turns out, it was really called "Gunk."  Well, now I actually need "gunk."

I would really like to hear you all share your "change." Please feel free to comment or send a story for a Post.  My audience button tells me some of are from China, Indonesia, New Zealand, Hungary, Israel, UK, France, Japan (Aki?), Canada, The Netherlands and Romania (that better be Claudia:-)).  Your special needs experience must be so very different from ours... please do consider sharing!

 The boys on Saturday with Debra Frenkel of Freedom Waters Foundation.

 Yesterday aboard a replica of The Nina at Tin City, Naples.

John, The Shark Tooth Guy, yesterday at the The Market at 6000 Goodlette-Frank.

Hurry and visit, this season's market ends with April.

Florida Governor cuts Medicaid Budget by15%

More news of budget cuts in Florida may be constantly in the air and nearly mind numbing with all the information there is to absorb.  This past week the Florida Governor applied emergency cuts to the Medicaid programs. (http://apd.myflorida.com/news/news/2011/emergency-rule-filing.pdf ) I can barely take it all in.  15% cuts will be applied across the board... surely there are more appropriate methods.  What I do know is that it is personal to my family.  We feel these cuts in our daily life. We felt it with Medicaid which aids special needs.  Medicaid comes and goes for Riley inexplicably... and is always pulling back and I am certain it is all about preserving their budget.  Please do not attempt to explain why this happens to me, I've heard the simple explanations and in reality no one really grasps this behemoth organization.  All of this is really more than I have energy to go into this morning.  All I know is that Riley's services are increasingly difficult to maintain.

The loss I truly fear is changes to Partners In Care (PIC) which is supported by Medicaid funds.  PIC is a pilot program in Lee, Hendry and Glades counties through Hope Hospice for children with "life altering" illnesses and their families.  They came into our lives when I was truly at the end of my rope.  I had nothing left, this is not an expression, it is a fact.  Their program came in and added services for Riley that helped turn our family around.  As far as I am concerned, they saved my life.  Budget cuts like the one enacted this week may prevent this amazing program from being there for other special needs families.  Yes, it's personal to me.

Below is Riley with his Dad.  They are so beautiful!

Thank you to all those attending the "Tally Rally" in Tallahassee today!  You all do so much for this community.

Easter Seals request: With the help of supporters like you, we are sending a clear message to President Obama that the $50 million funding increase he proposed is appreciated, and that it's essential it stays in the final budget.