Nitty Gritty Late Night Ramblings…

It’s here.  I’m in disbelief and somewhat on “auto-pilot” mode at this point.  I’ve often told others that last month’s wait was more difficult for me than the more recent weeks.  I’ve had my days of meltdowns, but for the most part, I’ve held it together by keeping very busy, planning and organizing.  This is the point at which you should laugh.

It’s no secret that Mel nor I are big planners.  He is naturally a whim kind-of guy and I’m just so “go with the flow” that neither of us get concerned over details.  It works.

In fact, Mel scheduled Hartsville’s first ever, “State of the City” address, to which we will all attend, for tonight at 6PM, after which, we’ll pack up and head to Charleston.  He scheduled the speech knowing that we would be at MUSC for pre-op the following day.  He is speaking to the city of Hartsville at the Watson Theatre of the Elizabeth Boatwright Coker Performing Arts Center.  Join us, if you will.

I’ve packed Mary Clare’s bags, and as I sit here tonight unable to sleep, I’m thinking of all I have to do tomorrow.  I’m going to work for a couple of hours.  I need to get the oil changed, and car cleaned.  I have to pack.  I’m not taking much.  Lounge pants, tennis shoes, casual wear.  It’s so ironic to me that soon I’ll be placing the life of my daughter literally in the hand of another, and I’m thinking of what sounds like a category in a beauty pageant. So petty. So minor.  It’s also something that I’ve had a difficult time with lately.  The insignificant.  I’ve noticed other’s disappointments in children’s report card grades, anger over the trash truck spilling over a few pieces of trash on “their street,”   or wrong orders at at restaurant, horns blowing because a pedestrian took too long.  And while I know that what I may deem unimportant at this moment in time, may very well be  significant to another, do all these truly matter in the grand scheme of things?

But I digress…

The details… We will leave for Charleston tonight after Mel’s State of the City address.  Mel will probably pack after the address while Mary Clare and I wait in the car for him. (I’m not being sarcastic about this in the least.  If you know Mel, you know I’m very serious.  Mel never prepares a speech but for this important address, he started and finished it just tonight.)  Mel called a friend last week to check on an apartment downtown that he has so graciously offered to us in the past.  If it is available (we’ll find out today), we will begin our journey there.  If the apartment is not available, we’ll most likely end up at the Courtyard  Charleston Marriot, which is our usual stay.

While in Pediatric Cardiology ICU, parents are officially not allowed to stay with children.  They kick you out  for an hour at 7AM and 7PM for shift change and/or emergencies/children returning from surgery, but all other hours are fair game.  I’m allowed to be with her, just not to “stay.”  If I don’t feel I have easy access to her while staying downtown due to parking concerns/garage/travel distance, we’ll check into the Ronald McDonald house.  It’s certainly not the Ritz, or the Marriot for that matter, but it’s walking distance from my precious Mary Clare.  I would pitch a tent on the street to be closer to her, if I could.  The RMH also gives me such a sense of belonging.  In the past, when we have stayed at a hotel during Mary Clare’s procedures, it’s difficult to see “civilians” with their cameras and tour guides complaining about the pillows in their room or traffic.  (I guess it goes back to the lack of compassion I have for those insignificant matters at moments like these.) I want to tell everyone I pass, “My little girl is in the hospital. I’m NOT here on vacation.”  At the RMH, everyone is a parent away from home.  Everyone has a child that is hurting.  They get it.

Once Mary Clare is out of Pediatric Cardiology ICU (I’m hoping no longer than the first week), she will be transferred to 8D, the pediatric cardiology step-down unit.  It was 7C when we were at MUSC in the past.  They’ve moved and it’s bigger!  We’ll be moving in with her there.  I’ll sleep with her in her hospital bed and Mel will get the couch/futon. 8D is in the Children’s Hospital and just down from the Children’s Atrium, a gloriously sunny, play atruim for all of the children at MUSC Children’s.  It’s tall walls and glass ceiling are filled with kites.  You can watch clouds pass overhead and just feel the sunshine.  It is amazing!  I’m envisioning Mary Clare spending many days in the atrium.

McCanless is much more aware of what’s going on now than in the past.  She was 3 1/2 and 4 when Mary Clare had her previous surgeries and now at age seven, she has a clearer understanding of what is about to happen.   McCanless has always been a child that has maturity and compassion well beyond her years, and I can only hope that she will truly understand and forgive me one day.  Mary Clare needs me and it rips my soul apart to have to leave McCanless behind yet again.

We have been told to prepare for a month-long stay, and our journey begins tomorrow at 9AM.  We will check-in at MUSC general admission to begin a day of pre-op testing.  Mel does a much better job of keeping everyone informed via twitter/facebook, but I’ll do my best.  (I usually vent by writing senseless, rambling posts with little info.  i.e., this post.)

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