May 03, 2013

Here I Am

AWOL, hibernating, underground, or perhaps all of the above.  Whatever you want to call it, I was off for the winter relocating my zen.  Where do you find yours?  You know, your zen, your inner-harmony, or (my new favorite descriptor) your flow?  Flow [the noun form] that is the mental state of operation, an existence where time doesn’t dominate, living in a complete state of contentedness and calm, experiencing and taking in the now, unaware of future happenings or to-do lists, absorbing  every single breath, sight and sound of what is.  Tricky stuff, that flow is.  But when I have it - and manage to keep it, I wouldn’t trade it for a million dollars. 

I find mine in the most unexpected places.

I find it here. . .

We started the New Year with Bridger quite sick.  Subsequently, we spent another week in the hospital in quite fragile health.  He had layering complications which ultimately were causing his liver to shut down.  One may think that would be a very trying period.  Indeed it is.  It is never easy to carry on with a normal life for the other four at home, managing activities, meals, homework and hugs while a mom is in the hospital and dad juggles being a busy attorney and a Mr. Mom when he comes home from work.  We go through it all too often and it doesn’t get easier, it is just part of our life.  But that is where I find my flow.  Our hospital room was so peaceful - Bridger oozes love even when he is in a practically comatose state and the nurses, doctors and staff feel it and comment to such.  I am told from the nurses that when the new nurses come on for the next shift our previous nurses boast to them how lucky they are to have us on their caseload that day.   This hospital stay was full of moments to reflect, time to chew on some deep thoughts that get buried inside me, wonderful conversations with nurses and doctors that resulted in a new possibility to be a presenter to medical students on the critical balance in maintaining a healthy, thriving family while caring for a medically complex child.   I came out as refreshed as if I had just spent a week in the Poconos.
So how do I find flow in our hospital stays?  I have to give credit to a couple of wonderful neighbors who are truly compassionate and serve because of that.  Too often people serve out of duty.  Service doesn’t necessarily breed compassion, but true compassion always breeds service.  Harmony came in the form of  a wonderful visit from a  dear friend that lives a parallel life caring for her daughter with special needs.  But I think the larger force in finding my flow here is realizing when everything is out of your control, that there is really nothing you can do about it.  So that takes away the need to worry, to plot, to plan.  You just exist where you truly are and savor what truly is.

I also find it here.

I really do.

Disney, for us, is just like the commercial states – Magical.  There was no better way to celebrate restored health than a week in Florida.  I will do this vacation justice in a separate blog post to come but will sum it up with three words.  Best week ever.  We flew down, rented a super huge white extended van complete with vinyl floors and a electronic back-up beeper (which the kids thought was the best car eVeR), stayed in our favorite off-site 3 bedroom  accessible condo, and hit all the parks.  Best week ever.
Bridger loves Disney in a way that is hard to describe.  Every morning since, the first thing he says when he wakes up is "I wah go DEEDEE".  No translation needed.  He cried every time he got off a ride, despite our best efforts to convince him that there would be another fun ride in a matter of minutes. 
I was told once by a woman that, “You people,” ('you people' was referring to you special needs families) “have it so easy!” She then launched into a nauseating monologue on how her son can’t stand in line for an hour for a ride at Disney either and how all of our perks make life so easy.  Comments like that are real zen-deflators.  May I interject that I would wait in line for a hundred hours for the Peter Pan ride if it meant that Bridger could stand on his on legs beside me.  I would trade bypassing the Splash Mountain lines if it meant that he wouldn’t have a seizure waiting in the parade line.  Disney World for us still comes with hours of Bridger screaming from over stimulation, with finding quiet cool places to tube feed, change a very large diaper or lifting 65 pounds out of his chair and into rides dozens of times a day, along with the regular challenges of herding the other 4 cats around an overcrowded park.  But despite all of that, I find my flow there.  It is a place where I see true excitement and utter joy screaming out of Bridger’s eyes at the same time of all my other children.  What is exciting to the others usually is quite the contrary to Bridger.  To have everyone smiling all at once is priceless. 

Lastly, I find it here.

The small and simple pleasure of taking a scalding bath in my extra long soaking tub filled with chocolate fudgy cake bubble bath from Sephora, an organic peppermint candle and a good book.   And when the lights go down in our big top at 20:00 hours, I can enjoy utter silence and my simple pleasure of my long bath.  I find my flow there too.

I don’t find my flow in yoga classes wearing the cutest yogini tops, or in exotic tropical destinations with my husband.  Groupon and Living Social are such evil teasers – blasting me with visual reminders of the incredible sites and travels I am missing out on for unbelievable low prices.   Those sites torment special needs moms as we realize we will never have those experiences.  It is a luxury  when we can go grocery shopping.  I won’t have palms and white sand any time in my near future. I can’t put off waiting to find my inner peace in a bulky bit if “me time”.  I won’t find my flow in any of these places because these things will never happen.  I find that time stands still in those every day moments like now, when I am having a second to think and type, while I entertain more medical phone calls in between sentences, crunching on some delicious almonds while my little spunky girl sits next to me drawing and spilling her juice box on my to-do list.  Yes, even in my flow, I still have one of those silly lists.