Thursday, April 26, 2012

Life, it’s in the details…

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All too often I find that I only have time to write about the big changes in our lives, the big appointments, hospitalizations, milestones, etc.… While important, I really desire to write about the everyday stuff of life too, you know the details that tell the story behind the story. 

For example last Wednesday, when Lucy and I headed over to the DuPont ED at 10:30 pm, it was not because that was the most opportune time for us to go, oh no no, that was when I arrived home with Jack who was competing in our county’s Reading Olympics competition.  Are you kidding, I hate going to the ED after 10 pm unless absolutely necessary, that’s experience talking!  At best we’ll be there a minimum of four hours, but in our world it usually means that we’ll get admitted sometime in the middle of the night/early morning. In this case it was around 4 am when we were transferred to our regular floor, which means no sleep for the mama as the admissions process is long and rounds start around 7 am.  My options were little to none however.  Phone calls were made to our infusion nurse, to our on call infusion pharmacist to find out which of Lucy’s new seizure meds were TPN compatible(FYI none of them, nor are they compatible with dextrose!), and finally to Dr. R who informed me that she needed to come in.  I very rarely travel more than a thirty minute radius from our house for obvious reasons, except for last Wednesday when I was about an hour away.  Call it Murphy’s law, bad luck, or a twist of fait but sometime around 7 pm my phone started vibrating in my pocket with our home number showing up on the caller ID.  I had that sinking feeling when I saw the number and hurdled over several desks and maneuvered around several students to take the call out in the hallway .  I knew that Lucy’s line was having difficulties, but I was secretly hoping that it was not as bad as I knew it was.    Lucy was left in very capable hands, both Drew and Helen were with her, but a clotted off line is a serious problem for our girl whose life depends on central access.  Even though it was serious, Drew and I decided that it was something that could wait until Jack’s competition was over.  Which meant that we would be awake all night, and that her seizure med schedule would be off by a few hours lowering her seizure threshold even further.  I am the mama to four kiddos, all of whom need their mama and are in some respects emotionally fragile, I also happen to have one who is medically fragile too.  Weighing decisions like a clotted off CVL and staying to support my son in what will most likely be the only Olympics competition he will medal in are the types of decisions that we face in our life.   These are the details I am talking about, the behind the scenes stuff of life that make up our life stories.

I know one day I will look back on this time in our lives and wonder just how we did it. I already do, often saying to Drew, “How did we manage to do that?”.  Carving out time to do anything other than the absolutely necessary stuff of life these days takes careful planning and organization.  Which I admit that I am good at doing, but at the same time I will also admit that I am exhausted from having to do.  We have uncommon obstacles that we need to plan around, Lucy’s daily schedule is just not that flexible.  Changes to that schedule induce stress which lowers her seizure threshold, among other things, and make for one unhappy little girl and stressed out mama.  Knowing this, it makes going places…doing things… planning anything… all that more exciting, how’s that for choice wording.  It is these sorts of details that I wish to capture and write about too.   

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