Monday, July 25, 2011

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


Sara said...

You and your husband deserve those moments. You need to feel normal even if only for an afternoon. That way when you return to the craziness of your life you are refreshed and ready to take on the next challenge.

High Heeled Life said...

As both parents and caregivers, you and your husband NEED to take time for yourselves and as a couple. My husband is wonderful with helping me with things I need - but, he also needs time for him. This time also helps to recharge his energy; something I'm certain you are often running on empty with.

I'm sorry to read that Riley had a siezure, but I'm glad that he was able to get through it with your love, guidance and warmth. xo HHL

pglm said...

in order to be the mom you need to be to both of your have to be able to provide self-care for yourself occasionally. Sharing intimate moments underwater with a gentle seahorse
..magical mystery of life shared between nature and spouse and water and love.....only these moments can provide the needed energy to once again be the hands on caregiver for your boys.
don't guilt yourself for having a good deserve to live life as fully as you can....I'm glad you had a few wondrful moments to relax.
hang in there...may God's love enfold you tonight...