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Remember today is International Coastal Cleanup Day!  Get to a cleanup site near you if possible this morning, you may need a shower afterward but you will feel great for being part of it.  Unfortunately, Riley's cold persists so we will have to clean up on our own another day... I promise.
 

Produced by and for people with disabilities.

New television program in England.

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.