Missing the Swim Meet

Early Saturday morning, before the sun came up, we were scuttling around getting ready for Ruby's swim meet.  These things start early, but that doesn't bother us too much because we're well acquainted with dawn due to Savannah's medication and feeding schedule. We have to get her up and fed by six every morning no matter how tired we are.  Have you ever had to get up early when you had the flu?  When you felt like death warmed over?  No matter how we feel we drag ourselves out of bed to change a diaper, operate medical devices, measure things out, and carry this fourteen year old girl through the house to the playroom.  Caring for a disabled child is a seven day a week, 365 day a year, job for life.  So, when the attendant can't make it, I mourn for the respite I had anticipated.

"So, you won't see me swim?" sadness in Ruby's voice.

"No, I have to stay home.  I'm sorry."

I dashed off an email to the swim meet volunteer coordinator to tell her that I wouldn't be able to work my shift. People like me make crappy volunteers because I have so little time to give, and when I do, I often take it back at the last second when Savannah intercedes.

Periodically I get asked if I will join this professional group or that one.  These groups always ask me to list volunteer experience on the application.  I have next to nil.  I toss their applications in the trash and curse, "My freakin' life is a volunteer opportunity." Must be nice to have the luxury of volunteerism, I think.  What a lifestyle that must be? Ah, let me imagine for a moment... to have a surplus of time... to be bored once again... even for a few minutes would be bliss, indeed.

Savannah enjoying a walk with her Daddy

Tamara and Ruby departed for the meet.  After Savannah's feeding ended, I took her for a stroll. She was so happy that the attendant didn't show; she had me all to herself.  She laughed and cooed during the entirety of our walk through the neighborhood. Back at home I read to her.  We sang and played the guitar. I let my resentment and disappointment fade.  She loves me so much that I am often overwhelmed by the generosity of her emotion.

It is mornings like this one that remind me that my life has been hijacked by schedules and protocols and systems and calendars and orders and invoices and expiration dates. But this is it, the only one I have.  I could choose to resist, wallow in self-pity, stew in anger, seethe in frustration. I could surrender, give up by crawling into a hole and live hermetically. Or I can choose to take it for what it is, and accept Savannah's smile as a gift that I would otherwise not receive.  I have spent too much time waiting my life out, enduring, drifting as an object of those calendars and orders and schedules and such. This is my life. I must assume some agency, accept Savannah's smile, her giggle, and treasure it for its beauty.

Our story is not about destinations-- swim meets and feedings, attendants who miss work.  It is about learning how to live in this moment and how to be grateful for it.  I was disappointed that I could not be there for Ruby, to support her, cheer her, hug her in triumph, and console her in defeat.  But I was there for my other daughter.  I can't forget how joyful Savannah was at the opportunity to spend more time with me. To her this day was a bonus, a blessing, not a disappointment.

And I can't forget that.

#sorrow #bliss #joy #triumph #tragedy #disability #specialneeds #parenting #family #children #expectation #anger #defeat #happiness