Taken Off Guard

For the better part of a year (or more) my darling daughter, Tricia, has been planning her perfect wedding.  Despite a long line of JOP marriages in my family of origin, my daughter wanted a traditional white wedding ala Pinterest inspiration.  When my boyfriend and I looked for a new house last year we tried our hardest to find one that would be suitable for a backyard wedding.  Failing that, my first born did her best to find a wedding venue that was close to our new home.  And she did.  Her fairy-tail wedding would take place only minutes from where I live.

I watched her plan every gossamer detail, even if I didn’t understand what a plate charger or up lighting was at the time.  But she knew in her mind’s eye what it was that she wanted on her wedding day.  She designed her own hightech DIY photo-booth, she rehearsed a song for them to perform, she hired a stylist to come to the house to help her and her entourage get ready on the day and she wanted me to be there on this very special occasion.

On my part, I tried to take more short walks around the outside of our house, went for short drives in the car when I could and talked with my doctor about anything I might be able to try to make this day happen for her.  But as the time approached, I realized the odds were not in our favor.  I understand it is unfathomable for people who can stand at a moment’s notice, to comprehend how I could possibly miss this momentous event in her life.  However, I am always taken off guard when someone who also has a life limiting illness is utterly insensitive to another persons unique and unfortunate circumstances.

fbmeanThis week I ran across such a person.  I made a short note on a facebook post when a sweet young woman asked for some version of stories of our hardest moments in life and how we get through them.  I wrote a little piece about this week being the hardest for me, as it looked bleak for me attending my daughter’s wedding.  But that we all faced even arduous times in our family with bad jokes, love and lots of laughter.  A random poster felt the need to comment on my thread, even though she didn’t know me, or my circumstances.  Some version of insisting that I go to my daughter’s wedding because SHE would do that no matter how difficult it was.  You see, sometimes we think that because we share a diagnosis or even bits of the same diagnosis as is the case in these complex auto-immune disorders .. there are still people who believe that if THEY can accomplish something, than so can the rest of us.  Its like people who loose a few pounds on the Pirate Diet and assume everyone should be able to shed pounds the same way.  Then there are those peeps who successfully quit smoking and call everyone else wimps if they can’t go cold turkey too.  Life would be easier if we were all programmable machines and could just flip the same switches to get the same outcome.  But in my experience it simply doesn’t work that way.

I normally let painful comments fall off my shoulders … or you know, write a blog laced with random metaphores that soothe my egoic mind in a rather passive aggressive fashion.  But this week I was in such deep pain at the prospect of letting my own daughter down that I felt completely vulnerable and inadequate.  The resulting autonomic flare was one of the worst I’ve had in recent weeks.  I went to our koi pond to try and wait it out, as I gasped for air inbetween tears and tried my best to breathe my way through a bout of tachycardia and PVCs that were kicking me from the inside of my rib cage.  During my own private hell, my daughter happened to wonder in to the backyard and asked me what had happened.  She put her arm around me and I told her how awful I felt that I was letting her down on her big day.

But you see, my daughter knows my situation, she’s watched my health decline over the years and she has always had the utmost respect and compassion for my efforts and short comings though she would never call any of it short comings.  What she did say was “Mama, its going to be over 90° and we’ll be standing in full sun, I don’t expect you’ll be able to make it.  Its really okay, you’ve done so much and we’ve had alot of fun this week.  You will be on skype during the ceremony and it will be perfect.”

dognose2noseAnd of course as the course of chronic illness goes, Sunday came and it would be one of those dog days of summer when my body was going to be a bitch.  Once again I was taken off guard as  I couldn’t even sit up let alone stand for the better part of the long morning.  So I crouched in a small ball in the shade near the koi pond and waited for the tides to turn.  Everyone was working very hard and I was praying that enough of the dysautonomic crud would lift in time for me to at least take a few pictures with my daughter before she left for the wedding.  She bought no less than five dresses for me this week, so that I would have something “nice” to wear even if I wasn’t able to attend.  It was the very least I could do to prop myself up and smile from my heart and not my pounding head.  The redneck spent much of the week making sure there was a clear path to the koi pond, as Tricia already told him “My dress does not want to walk past this,”  as she gave a royal wave of  her hand at the clutter and grunge that had collected near the west end of our patio.

My youngest daughter was an excellent go between the bride and her mother for much of the day, keeping us at separate ends of the house and reassuring her sister that her mother was fine and not to worry.  Then coming back to hold my hand and reassure ME that it was perfectly alright for me to break down and cry if I felt the urge to do so.  Because even though I knew it would all pass, I didn’t have any guarantee on when or to what extent I’d be able to rise to the occasion.  And still in the back of my mind, I knew I’d be letting my daughter down.  I knew she really wanted me to see her get married.  I knew that was important to her and in all the bridal shows that she watched this past year, she would always cry when the mother couldn’t be there on the bride’s big day.

By two in the afternoon, I was able to uncurl my legs and stand up long enough to slip on the lovely dress my daughter had selected for me.  I got to tiptoe in to see the stylist working her magic on the bridal party.  Tricia looked so much like my mother at that age.  She would wear my mother’s opal and diamond ring as something borrowed, or perhaps it was something old.  I missed my mother being here of course, but seeing the sparkle in Tricia’s smile as she got ready for her big day filled my heart with only joy.  It filled Tricia’s tummy with butterflies and I made sure she had aloe vera papaya juice and gummy bear probiotics which was the least I could do by way of being “Mom”.  I tried not to think about the pictures she said she wanted us all to take before she left in the limousine.  My boyfriend assured me that they would be quick and he would simply hold me up if need be and since I’ve had years to practice faking a smile that it would all be fine.

mother-daughterThe photographer took pictures of me slipping the wedding dress off of the hanger and zipping Tricia up.  Everyone else went to the back yard and Tricia asked me to stay behind and take a couple Mother and Daughter photos before we went out to the koi pond where she said Paul would be waiting and we’d do the “reveal” pictures as she referred to them.  After a few more smile moments, she turned to me and said … “Mama, I win.”  the reference was that she was about to make me cry.  And she took my arm and walked me through the kitchen and out to the back yard.  My boyfriend queued a song Tricia had picked for the photo shoot … it was Peal Jam’s Last Kiss.  I realize that may sound like a strange song for the occasion, but for Tricia and I it is a very old call back to a time when she was leaving for her Junior year semester abroad and she said, let’s sing a happy song and began “Oh where oh where can my baby be?”.  We sing it acapella frequently now in our dysfunctional family functions and she knew it would bring a tear to my eye.  Which it did.

ev1But when I walked her into the entrance of our koi pond I was floored to see so many people standing around.  Her father and his wife were there as were the groom’s parents and all of the siblings.  When I saw that the preacher was standing there waiting I realized we didn’t just walk into a photoshoot.  My darling (and deceptive) daughter had made plans to get married with me there.  There wasn’t a dry eye in the house.  And when it was all “over”, we did take all of those formal pictures and then the limo took everyone up to the wedding venue just as she planned for the better part of a year.  And yes, I was able to watch the ceremony and the first dance on skype as we discussed.

kissbrideSometimes despite all the planning and promises, we can still be surprised by the moments in life when our breath is taken away and we are delightfully taken off guard.

Oh, one last thing … Tricia and the redneck had arranged to have the limo driver circle back round to the house after he finished with all the wedding guests so that he and I would be able to take a slow drive around the block.  Which we did and which made him smile very much.



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