When I was a kid I made a promise to myself that when I grew up I would have a “normal” life.  I defined normal as a life with a happy marriage, a career I liked, and eventually kids (healthy ones, obviously).  We would do family trips, have hectic schedules, and a few unavoidable setbacks like all people do.  I assumed these would include some lean years financially, some tricky parenting phases, dry spots in marriage… the usual.

About three years ago I was driving home from a job I loved, the sunset warming my hands on my paid off steering wheel, to a husband who was probably already working on dinner. As my music pumped energy into my veins I remember thinking our life was so good. Everything had worked out well.  Yes, we had experienced some of those setbacks, but so far we were on course for a safe, normal life.

Today we woke up at five am and loaded our 20 month old into the car and drove out into the sunrise toward Vanderbilt Children’s Hospital.  Three hours later her cardiologist informed us the echocardiogram results concluded our daughter would have her second open heart surgery before the age of two. “Normal” feels pretty unattainable tonight.

When I thought about the questions I was going to ask as a parent, concerns I would have to face, the scenario of asking if my child’s life expectancy would still be longer than my own was not on the list.  And to be totally honest, it pisses me off.

Comparison is not a good thing.  When you are in the waiting room of a pediatric surgical floor it is also unavoidable.  The kids running around waiting to be called back to get something like ear tubes put in instantly evoke resentment.  Then we walked downstairs for a much needed caffeine fix and I passed a boy encased in an electronic wheel chair three times larger than his frail frame, which he controlled with a shriveled, tiny hand.  As I noticed the outline of a shunt under his skin stretching across his temple the resentment pendulum immediately swung the opposite direction. I felt a mixture of gratitude and guilt.  I was happy that it wasn’t my child facing those challenges, but why should it have to happen to anyone’s child?

Before our daughter’s diagnosis, before the life plan got hijacked, when I would hear horror stories about kids getting sick, spouses dying, car wrecks, cancer…, the list goes on, I would feel sickened and also relieved.  Relieved because, while I knew it was illogical and silly to admit, deep down I felt that every time something bad happened to someone else it somehow statistically pushed me slightly farther away from something bad happening to me.  Sort of like standing right next to a person when they get struck by lightening.  It is scary to hear the zap, but unlikely it will hit that close again.

Now we are the zap.  We fit in the category of stories people hear about and experience that horrible mixture of deep sorrow for our pain and relief that it isn’t their own.  (By the way, I certainly don’t think anyone is in any way indifferent to our daughter’s situation. We are surrounded by so many friends and family who deeply love us and Rosalind. I cannot express gratitude enough for all the prayers and support.)  I just mean there is that natural relief of it being someone else’s situation.  I felt it today when I saw that boy.  We all feel it at certain times. That is normal.

Normal is a strange thing.  It is strange because it doesn’t exist.  The quest for normalcy is a modern Hunting Of The Snark.  

Many people assume, rightfully so, that we are the most scared of the surgery.  I do dread it.  I would do anything to avoid it, but that is because I do not want Rosalind to be in pain.  The procedure itself I am strangely not overly concerned about.  I do believe she will come through it, that her doctors are some of the best in the world, and she will recover.  But what I am most afraid of is that we will move further away from normal.  That this surgery will go fine but then something else will go wrong and we will spend more months having more echocardiograms, hearing things are uncertain and ultimately needing another procedure.  That is what frightens me.  I want to just get this fixed and move on.  I want her to be able to move on. If we could be guaranteed that nothing else would go wrong, that we won’t be back here in another year or two, it would seem so much easier. What I dread is that the taste of normal we have had over the last 16 months will vanish. But no one gets any guarantees on this side of heaven.

After the recovery from her first surgery our life has looked often like what I imagined it should look like.  Most days I almost forget she has a congenital heart defect.  The only visible trace is a thin scar on her chest. But on nights like tonight it is easy to feel sorry for myself.  To deny the reality of all the things that have gone right that on paper shouldn’t have.  Comparison is lethal to joy.

When that little boy passed us today at the hospital the first thing I noticed was his deformity. My mind categorized his situation as far worse than our daughter’s.  But when I paid a little more attention he was zipping around in his wheelchair laughing and acting like a normal (there is that word again) kid.  His mom was negotiating with him to follow her like normal parents do.  I got to see him interact with both his parents during our visit.  They appeared so normal, happy even, in a scenario that was the antithesis of normalcy.  They gave me hope, for they clearly had learned the painful and divine art of joy in sorrow.

Through this situation with Rosalind’s heart my own heart has undergone a lifesaving repair: I am learning to let go of “normal.”  Holding onto it would have led to bitterness, and that is an equally deadly type of scar tissue. It blocks the flow of joy.  I am not happy about what has a happened, but I am not going to allow my life, or her’s (to the extent I can guide her) be defined by comparing our story to anyone else’s.  God has allowed her to have a unique story.  It is anything but normal.  But isn’t that the common trait of all epic tales?

P.S.  I am publishing this without editing.  I am sure there are many typos, so I apologize to the reader.  Tomorrow I will feel like editing, tonight I just feel like venting.