The Polar Express Chair

The holiday season has kept us pretty busy... Daddy makes sure Riley can participate in any celebration.  This is not an easy task so decorating the wheelchair is usually the first step.  Today Riley's class will watch The Polar Express.  His chair is covered in lights as well as a musical ornament.  They'll know he's there today!

Here Riley is before fully awake waiting for his school bus.

Last week John let me tag along to his school presentations as The Shark Tooth Guy.  First he met Kindergartner's in Mrs. Doyle's classroom then on to the 1st Graders, including Ronan.

Seahorse to Seizure

Our weekend started of full of promise and excitement.  Our weekend began with a visit from "ReRe," John's mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.

Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League.  Note, Ronan has discovered camouflage tie dye.... no stopping him now.

Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together.  We drove northward to fossil dive off Venice Beach.  The primary goal was simply to have some fun together.  Fun has been sacrificed in our lives with the intensity of caring for Riley.  Sometimes we wonder if we even remember how to have fun.  The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible.  We had some great fossil finds... those will show up later on The Shark Tooth Guy.

My happiest moment was stumbling over a Seahorse  (no we don't currently carry an underwater camera so I found a link).  Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before.  This time I made the discovery myself.  She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on.  Those encounters together are magical.

We were home by late afternoon and reality quickly reasserted itself.  Do John and I really have the right to freedom at all?  Riley was suffering for a day without us.  He refused to eat dinner and vomited up his medicines.  Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.'s dedicated to special needs children cannot work with him properly and we pay for that time away.  Of course he lost all his medication.  Riley took Zofran for the first time and to our great relief the vomiting stopped.  However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.

We want to believe there will be some relief for all of us.... mostly for Riley, but as his parents we need a little joy in life too.  Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.

We are all special... by Stacie Wiesenbaugh

State of July

Keeping up with my blog is a challenge I gladly accept, however it may be more than I should have taken on.  This mommy is feeling a little sad and run down and really shouldn't share it all, yet I blog on.  Visiting other special needs blogs, I find many of them have autistic children who at least feed themselves or regularly scheduled nursing visits to get them through the day or some sleep at night.  There is the occasional blog where the writer/parent is in the most difficult stage of their child's disability and has found this one outlet to vent.

Speaking  of other blogs, here is an honest account of a special needs child finding his smile at Christians Journey. Also, I strongly recommend a video on Youtube that is definitely worth watching and sharing, The Strongest Dad in the World.

Do not mistake me, there are many moments to be grateful for in the past several days.  First on my mind, John and I had some fun together!  Really.  We did.  I think it's been a year since I was out scuba diving last.  Our very precious respite hours were arranged through Partner's In Care (PIC), bringing Miss Debbie to watch over Riley.  Ronan spent the day with a schoolmate.  John loaded up the car and off we went to Venice for a day of fossil diving.  John got me aboard The Shark Tooth Guy's kayak and he swam alongside.  Strangely he was winded long before me:-)  Visibility was dreadful and John searched until discovering that the blocks (an artificial reef area) off Alhambra had at least 1-2 feet of visibility.  I held on to him most of the time but frightened him quite a bit by getting lost at one point.  I was lost, he was worried.  After lecturing me above, he recovered and we had quite a nice day together.  I regrettably supplied lovely fodder for The Shark Tooth Guys facebook page.  My first return into the kayak did not go smoothly, not that I expected it to be graceful.  John coached me on how to maneuver myself back into the kayak after he lifted all my diving equipment back in for me.  I tried to push my weight toward the far side but managed to tip the kayak swiftly into my face and now sport a fat lip.  The triumph was that we didn't lose any equipment into the ocean depths!  Not so bad then.

Here is the weekend's fossil collection.  This is a riot, everything in our lives now includes a burp cloth, one of the many cloth diapers we use to be prepared for Riley.  I leave trails of them everywhere I go and now they are even used for photo backgrounds. 

Fourth of July we stayed home.  The big activities of the day was swimming.  Ronan was determined to have time in the pool with Daddy.  I don't believe he noticed the deluge of rain, but I know John did.

To the other sad and run down special needs parents and caregivers searching for your child's smile wherever you are, I invite you to share your story.  I see you visit silently from all areas of my little widget globe.  No judgment from me.  This is simply a place to paint a portrait of the special needs life.  Send me a comment and we'll work it out.

We are all special... thank you for stopping by, Stacie.

Here is a discussion on inclusion by Galen which all special needs parents debate.
Since I am really into sharing today, a special needs mom shares her heartache on Serendipity.

One more interesting link for you, The Amazing Art of Disabled Artists.

Beyond Gluten-Free: The Chitin Binging Bombshell

There are no plans for me to stop eating wheat, especially when paired with sugar.

This newsletter linked here sent out by Sayer at our local health food store helps me understand some of the mechanics John and I practice when planning Riley's meals.  Riley's severe food allergies dictated our daily lives for quite some time.  His tiny little body was so sensitive to everything he consumed.  I plan on pursuing this more in depth on a later date.  Perhaps there are other readers who could use this information now for their younger and very sensitive children.  I trust some will find this helpful.  You can find more on www.GreenMedInfo.com.

Should anyone find my posts helpful... I would love to hear about it.

Since I have your attention... here are some recent finds by The Shark Tooth Guy, aka John!

I will catch up with you all later... there is some freshly baked lemon blueberry bread calling me. 
Good Night!  Stacie

A Moment to Breathe

My greatest challenge is simply the constancy of being a special needs mom.

John, my husband, would prefer that I not use that term, "special needs."  Everyone has their issues and he is correct.  I see this one issue as unique and something which should certainly be address.  We have one special needs child and one typically developing child... there is definitely a difference in raising the two.  For instance, Ronan, the typical child, is out at a Pokemon Tournament with "Kappy" (my mom Kathy).  John is fossil diving  in preparation for a presentation tomorrow morning at The Village School.  Riley is naturally right beside me.  

Riley has been right beside me all day and all night.  He requires constant vigilance.  Even as I write this post I am half aware of my task while I watch and listen to his every breath.  He is working very hard in his stander, because as you may remember that is very important for his well being.  This is however, my moment to breathe as he is not actually in my arms at this moment nor am I holding his hand while he sits beside me.  Only recently have I gained these precious moments and I remember all too well what it is like to exist without them.  We have come very far... especially Riley and I am proud of his amazing achievement to be able to process and live in this challenging world.

There will be more on this... I am not really certain how to communicate this constant alertness.  Fortunately, as I mentioned before, this is a blog and I have time.   Though I was kind of looking forward to the end of the world yesterday... oh well, guess we keep on going!  Perhaps there is another parent out there who knows how to explain this who may be willing to share?

Better go now... he has been in that stander long enough and must be quite thirsty by now!

We are all special... by Stacie Wiesenbaugh

Yacht's, Cook Off's, Markets and Diving

Isolation has not been an issue this weekend.  It has been quite a full weekend and we did do it all.

Below, John shares his fossil bed site for The Shark Tooth Guy collections.

The Shark Tooth Guy, aka John, set up shop yesterday for the last day of the season for The Market at 6000 Goodlette.  Organizer Lesley does a terrific job managing this art and farmer's market.  It has been a wonderful venue for introducing The Shark Tooth Guy to Naples and many seasonal folk.  We are hoping to grow even more in the next year.  John took the kayak out again today to dive about 1 mile offshore in hopes of building our inventory.  Our first prehistoric horse foot rests on my table now.

 The boys, my mom and I had the opportunity to board Lady Serenity yesterday as Freedom Waters Foundation (FWF) hosted The Division of Blind Services.  It was the perfect day to be out yachting around Naples and the volunteers on board catered to each of us.  I do wish more than one other family had taken FWF up on this gift.  I understand the challenges of pulling together a special needs family for any outing, let alone one that requires extra preparation.  However, it is also an opportunity to enjoy our families and ourselves we rarely get the time to appreciate.

After our lovely outing, I dropped my mother and boys off at home.  Riley is quite a handful, I am asking a lot of my mom to do this for an hour.  She does this happily when she is available however.  Strangely, we do regularly find another body helping when we return home.  This is not a problem... yet I do need to establish why this happens.  Does this happen because my mother immediately seeks help for handling Riley?  Or does this happen because she takes the opportunity to visit with the other person.  Should it in fact be the case that this happens for help then I should no longer seek for my mom to be alone with Riley for any length of time at all.  If it happens for company... then I should be alright with it and know that my mother just likes to visit.  Which it is I may never really know.

My next stop, Rodes Fish House for the Chili Cook Off.  John had brought my entry to the bar right after he finished with the market.  His very rare appearance in a bar did not appear to make him the least uncomfortable.  The bartender was somehow under the impression that the lovely young woman seated next to John was his wife and had added her to John's tab.  When I appeared the very confused bartender had such a laugh, hmmm - how insulted should I be - I'm actually not so no worries - John ended the afternoon with a tab of $1.  I really missed something good.  I had a lovely and very much appreciated surprise that my emails and FB posts produced four people to come vote and enjoy the event with us.  Unexpectedly, my bar appearances being quite rare, I was even recognized by another patron as "Kathleen's daughter... Ronan's mom."  He turned out to be Todd the tennis pro from my mom's club, quite out of his usual buttoned down appearance with the chili entry right next to mine.  How fun was that that he could place me so far away.  I wish I was so good at placing people.  It can be a small world.  I did not win... my chili had the great offense of containing beans... but it was fun.

Now for Sunday, it is a day to recover because all that activity is like taking from Riley's bank.  A little extra coddling for Riley and stretching and he can handle it are in order before launching into the week of school and therapy.  Ronan is also quite anxious that I learn to play chess with him.  We will stay home, our day will be full enough.

So dear readers... I am loving that you have found my strange little niche blog from Russia, Denmark, U.K, and even Saudi Arabia among others.  Are you all special needs families as well?  You are more than welcome to tell us about your day.  I, among others, would enjoy hearing about it!  

Quite the rambler today.  Enjoy your Sunday!  Stacie Wiesenbaugh

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.

April Fool's in a Doctor's Office

It is a beautiful Saturday morning.  John is at The Market on Goodlette Frank selling fossils as The Shark Tooth Guy.  We are hoping for a busy turn-out as the other farmer's markets close down for the season.

Took  Ronan in for a dermatology doctor visit.   Since I must bring Riley along there was the great production of making sure he was well  fed and comfortable, pack up with anything he may need such as clothes change or diapers, then load up Riley's many supplies.  Then I use the heavy ramp, disassemble the wheelchair and fit it in the back of the jeep.  Carefully place Riley in his seat.  Ronan, must just bring himself, load and buckle himself.  Reverse everything on the other side when we arrive in the parking lot for the medical building. 

As I do all this and others arrive long after, file by and sign in to be seen before us.  This is no one else's fault, but it gets to me anyway.  My time is just as valuable.

It does remind me however, that there are countless instances when I do have legitimate reason to be annoyed by the other clientele coming and going.  One memory stands out above the others.    A visit to Dr. D. Perlmutter's office in a beautiful medical building in Naples.  After going through the production and finally arriving inside the quiet open foyer.  Keep in mind, at the time Ronan was just a baby and I held him in one arm while pushing the wheelchair with another.  We must have been difficult not to notice yet everyone did.  I located the single elevator and positioned us a few feet in front of the door in the event people would be exiting.  We were not so easy to maneuver so I usually try not to be in the way.  We waited longer than expected and found that many people entered the building just after us and wanted the elevator as well.  We were in the middle of a large crowd when we had started alone.  The doors finally opened.  I do not even remember if anyone stepped off.  I do remember very well that the entire crowd surged around me, piled in to the elevator, turned to face me - each with a stone-faced expression - with no room left and allowed the doors to close before I could even move.   Would you believe, it happened again.  The anger  I felt sent heat to my face and I felt my pulse rising.  The next load I shoved us, Riley - chair - baby and all through the crowd onto the elevator .  The individuals there at that moment were certain to dismiss me as a crazy woman.

Yes, this really happened just as I related the story!  This scenario has repeated many times to various degrees.  Please help me to understand why this happens if anyone has insight?  I welcome your comments.