Home Sweet Home …. and Other Endless Ramblings in My Mind

We made it home.

I was a little concerned between Hurricane Joaquin and our sheer exhaustion that we might not make it.  The time for the flight is only 1 hour 5 minutes.  Total driving time spent getting to the airport and getting home was nearly double that.  We had to switch drivers half way home because Rick was so tired he was afraid he might fall asleep behind the wheel.

A representation of me trying to write this blog post after returning from the NIH.
A representation of me trying to write this blog post after returning from the NIH.

The one day the NIH does not have airport shuttle service is Saturdays, but they were so wonderful to take care of a cab for us to get to the airport.  How awesome was that?  Yes, we were human guinea pigs for a week, but I feel like I need to send flowers because these people were so amazing.  Seriously.  These people …. the case worker, coordinator, nurse practitioner …. I feel like we’ve forged a relationship this week.  That’s one of the main differences between being a relatively healthy person and one who lives with a chronic or life threatening disease.

I love my doctor.  Really I do.  But he is my doctor.  He is compassionate, knowledgeable, and has a killer accent that I could listen to all day long, but he’s my doctor.  Period. If I need to speak to him, it will be with an appointment or after I go through a receptionist screening calls.

However, the genetic doctor our family has seen since 2002 was the first to know I was pregnant with my second child.  And by first, I mean even before my husband.  I have her email and she responds typically within 30 minutes.  I have the personal cell phone number of the nurse practitioner at our cardiologist’s office.   It’s like that when you have a team of doctors that you see for serious illnesses.  So now I feel like our family has not only gained members to our medical team this week.  I feel like we have gained new members of an incredible support system.

That’s all great.  It makes all the chaos and lack of sleep from this week worth it.

But I don’t have just warm fuzzy feelings looking back on this week.  This life is hard.  Living in a family that deals with serious, chronic, lifelong illness is damn hard.  Most of the time families like ours just go about their business running to work, school, whatever…..just living life.  It’s an ordinary kind of life. You don’t think about doctors visits and hospital bills and medication everyday.  You worry about getting the yard mowed, getting the car serviced, buying new clothes for the kids….you know.

But then, you have an appointment or series of appointments that interrupt your life slapping you in the face with the reality of this elephant in the room.  You have no choice but to let it be your life for a little while — not forever, but for a little while.  Of course, sometimes those appointment days are so full that you don’t have a chance to really do much thinking or absorbing or being.  You’re just running from place to place, test to test.  No matter…..it might be that day or the next or the next, but finally it will come.  The flood.

It’s the flood of emotions.  Relief that it’s not worse.  Guilt that you feel sad or angry.  Fear of the future.  Thankfulness for treatments and medications.   Sadness for your child….or spouse…..or parent……or yourself….or whomever.   More guilt that maybe you should be doing more, being more.  Stress over what it all means.  A desperation for God and a need for it all to make cosmic sense.  A mind that relentlessly torments over worst case scenarios.  And the weight of what will you tell people.  You’re preparing for all the kind, best intentioned questions recapping the appointments and procedures.

Sometimes the flood brings physical tears that bring with it a headache the size of the stress you’ve been dealing with. Other times there is only an uneasy melancholy that hangs around for a few days …. until life returns to normal. Sometimes the flood brings short tempers and an obsessive need to clean and throw out things.  Other times it brings self-deprecating humor and no healthy boundaries because you feel so bad your kid had to be poked and prodded.

But then….as quickly as it came, the flood disappears.  You don’t think quite so much about the medical condition.  Your child (or spouse, or parent, or other loved one) begins to describe themselves as funny, serious, kind, compassionate, an athlete, a musician…..anything other than the face of that disease.  And that’s when Mom can breath and begin to think more about the laundry than a disease.


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