September 15, 2015

A Place For Us

Last weekend marked the grand farewell of Pool Season.

Or so I heard.

Pool Season didn't happen this summer for us this year.  I just couldn't summon the strength for it. With Bridger being a floppy 83 pounds now, every time I thought about taking him to the pool my body just started twitching in pain and recoiled at the very thought of it.

83 pounds is a large number.  It might not seem that large when we think of the weight bench.  But when lifting typical weights you lay yourself down perfectly positioned and supported on the bench, or from a dead lift you hold perfect form watching yourself in the mirror as you focus on lifting with your legs and not with your back.  Not with Special. It is an awkward, formless one handed grasp as your lean with a leg half cocked in the air to pick the child up. It is a crouched with a pendulum momentum throwing heave to achieve the next position as an unflattering grunt comes out of your throat.

It is not pretty, and it hurts.  Especially when wet with an extra 20 pounds of water weight added to the ginormous man-sized swim diaper.

Last year I gave it a go a handful of times.  Hauling his wet and slippery body in and out of the pool and managing his limbs in an alternative state of floppy then--unexpectedly spastic--then back to floppy which guarantees two things 1) I will, at some point, get a spastic hard fist to the eye socket from him that renders me blind, 2) I will, at some point, flash something at someone that should always remain covered.  Wearing a swimsuit and physically managing Bridger for pool time does not a pretty combination make.

We cool off elsewhere though.  We love the beach with Alan's favorite piece of equipment, Bridger's beach wheelchair.  We love going to a local waterpark where the beach wheelchair is of huge benefit too.  I also am a huge HUGE fan of splash pads.  Been to every little one in the surrounding area that there is.  We throw Bridger in his old wheelchair and he giddily wheels himself around the squirters with his sibs.  It does give me some bit of worry that the same child who is at risk for aspiration is the same one that finds great delight in taking a squirter at point blank range right up the schnoz.

Everyone loves splash pads -- with the exception of Ty.  That ranks right up there with walking over subway grates as his top two things that make him ridiculously nervous.  So he just sits and plays the dutiful lifeguard.

BUT, my #1 favorite summer cool off spot is a place made for us.

It is called Our Special Harbor and it pure joy connected to a hose.

Our Special Harbor is a Sprayground and is a fully accessible park inspired by a little boy with special needs who loved the water who passed away several years ago.  In his honor, his parents put together a memorial fund to bring joy to other families with children with special needs.  Our Special Harbor is one of their initiatives that breaks down barriers, encourages interaction and provides families and children of all abilities a place to play and have fun together.   The Joey Pizzano Memorial Fund "recognizes the different challenges that families raising children with special needs face and understand how important it is for families to feel comfortable in public settings where they can enjoy new experiences together."  What an amazing organization!  Even though we bring our own wheels, Our Special Harbor even provides pediatric water wheelchairs for those that need them!

It is just under an hour away, but worth the pilgrimage.  Especially when it is down the street from the Krispy Kreme doughnut store.  We always make a day of it with having our sprayground fun and then capping it off watching the doughnuts roll down the glazing line and filling our bellies.

It was so fun to actually sit {YES SIT!} at the "pool" and let my herd run and wheel around in absolute joy.  It is a riot to watch them.  

Apparently some others there thought the same thing watching us as I was approached for permission to photograph my family.  It turns out representatives from the foundation were there and wanted to feature our family for their website.  I have always wanted to be featured on a website wearing my swimsuit {insert sarcastic grimace], so I consented. Actually, I didn't even give it second thought because I am so grateful to the JPMF for creating such an amazing place that gives my family an entire day's worth of summer fun and happy memories for free!

The list of places that we cannot visit continues to grow, which makes me more and more grateful for the places we can.  Top on that list is Our Special Harbor.  It definitely is a place for our family.  I think my guy feels at home here, don't you?