Wednesday, January 18, 2012


Present Day

A friend recently told me she admired that I was always smiling and seemed to always have it together.  She said she wished she had a better attitude. I was flattered for the compliment, but that isn't the entire truth of who I am.  

Who I am and what I let people see can be two very different things.

Recently I made the trip with M to our Children's Hospital for his kidney check up.  The seemingly endless appointments always manage to put me on edge and this day was no exception.  M has had more than his fair share of medical appointments and never, not even once, has a doctor ever said to us, "Everything looks great!  Have a nice life!"  There always seems to be something.  It could be a big something or a small something, but there always is a "something." Always a need to return again.

Just prior to this kidney appointment, I had taken M to the eye doctor.  M is legally visually impaired. The doctor said the same thing that she does with each visit:  M vision has declined.  He needs new glasses.  Make another appointment for three months.

We had also just been to the neurologist and I had received the doctor's report in the mail. The final three words in the overview were:  Subtle Functional Deterioration.  Under that was a recommendation for further genetic testing and a follow up appointment with neurology once those results were in.

That genetics appointment was scheduled for the day after M's kidney appointment.

I felt overwhelmed as I drove to the Chilrdren's Hospital.  I felt angry.  I felt sad.  I felt robbed.  I hated that this was the only life M knew.  I hated that this had so much control over our entire family.  I wished that instead of appointments at the hospital that I was taking M and Miss J someplace fabulous.  I thought about the out-of -pocket expenses we'd paid; enough to fund a small country I'm sure.  My heart would sink each time Miss J would tell me about yet  another friend who had just returned from Disney World.  I know she would love to go.  She never asks if she can.  If we didn't have this to deal with, how many trips to Disney could we have taken?  At times I get mad that everything just seems so hard.

This is where my mind goes when I am on the road heading to an appointment with M in the backseat.  This is when I have my pity party and run the full emotional gamut.

We arrived at the nephrologist's office and checked in.  M took his seat in the waiting room.  A few moments later, a father arrived with his son. After checking in, they also came to sit in the waiting area.  The boy sat at a table flipping through an album filled with baseball cards.  M sat next to me playing Angry Birds on his iPad.  

The father and I made small talk.  I learned that M and the boy were the same age.  I learned that the boy was a "frequent flier" in nephrology.  The father explained that his boy had been quite ill, but was finally on the upswing.  He told me his son did not like school.

The boy let out a heavy sigh and informed his father he was bored.  The father nodded in M's direction and suggested he show M his baseball cards.  

I chimed in, "He loves to share his iPad if you'd like to play a game on it."

The boy looked at me, then at his father.  He looked angry.  He shot back, "I don't want to talk to him.  I don't want to play with him.  He's weird!"   Those words a direct hit to this mother's heart.

The father looked uncomfortable.  I did my best to hide shock and emotion.  I brushed it off.  Thankfully at that moment the nurse called our name.  I think the father was just as grateful as I was to be released from the grip of a most awkward situation.

After the appointment, when I was back in my car making my way home, I began to think again.  I first congratulated myself for holding it together in the waiting room. When the boy shouted those words, my first instinct was to twist his little head off.  My first instinct was to give both the child and his father a verbal beat down.  I wanted to respond that I would rather have a child who was weird than an evil little spawn.  Thankful in that moment I had some ability to reason left in me and kept my mouth shut.

I thought more about it. As I calmed, I was able to think clearly.  Logically.

This child was a young boy.  Perhaps he he hadn't interacted much with children who had special needs. Perhaps he had not yet been schooled in social graces.  Perhaps he didn't know how to articulate with words what he was feeling.  Perhaps he was confused by M, maybe even a bit scared.  Maybe he thought M was contagious.  

The father had mentioned frequent trips to the kidney doctor.  The little boy's swollen moon face told me he was likely on steroids.  Perhaps that accounted for the outburst.  

Perhaps this father felt as I often did.  Exhausted.  Scared.  Alone.  Overwhelmed.  Perhaps this father's mind also wandered into dark corners on the ride to the hospital.  Perhaps he was fighting a bigger fight than we were.

 Perhaps he and I had more in common than we might have though. Perhaps he and I were paddling the same boat, just in different streams.  

It makes me think of Mother Goose:

Row, row, row your boat,
Gently down the stream.
Merrily! Merrily! Merrily! Merrily!
Life is but a dream.

This child's rhyme makes me angry. Angry because I haven't been rowing gently down a stream.  I've been in a tiny boat  with an even  smaller paddle, in raging rapids, rowing furiously against the current.  Perhaps if this is 'but a dream' now would be a good time to wake up. 

These are the days that leave me feeling beat up and the smiles don't come easy.  These are the days when I wallow in the unfairness.  The days when nothing makes sense.   This is when I wonder if I fell apart, who would put me back together. This is when I hurt. 

This is the real me. Raw and honest.  This is me giving you a peek inside.  

I am borrowing a friend's favorite quote:  "Be kinder than necessary because everyone you meet is fighting some kind of battle."

Be Kind.  Be gentle.

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