Keep Calm and Carry On...

When you are the parent of a child (or children) with special needs and/or health issues, you quickly learn that there are good days and bad days.  The good days are days when, if only for a moment, you get to forget.  You get to forget that things aren’t absolutely perfect, because to you, any day that doesn’t involve a doctor or an appointment or pain or worry IS perfect.

The bad days are days when you remember.  You remember every appointment, every needle stick, every illness, and every surgery, because every appointment, every needle stick, every illness, and every surgery reminds you of each and every one before it.  And you realize, again, that it will never be over.  There will always be more to come.

Yesterday was a bad day.  We met with a new hematologist.  This always means going over the medical history of the boys.  It involves opening up the binders and the journals that I like to keep closed.  If they stay closed, you see, it means that I’m not putting something in or taking something out – slicing open old wounds or creating new scars.  Yesterday, I had to do both.  After retelling their stories to a nurse, then to a hemophilia coordinator, then to a Fellow, and finally to the specialist (slice, slice, slice, SLICE), we learned that we would also be adding to our numerous psychological scars, because the boys needed to have extensive blood work done.

Henry went first.  Though he’s the younger one, he’s been through more.  He’s pretty familiar with the process.  He cried when the needle broke the skin, but quickly recovered as his mind drifted to the “prize box.”  He became a bit uneasy by the time they got to the sixth tube of blood, but he managed to sit still for all eight.

Jackson was next and on the verge of a nervous breakdown by the time he climbed onto my lap.  When they stuck him, I had to tighten my grip, because he flailed and screamed.  I whispered happy thoughts into his ear, but he ignored me.  My mom (Mimi was along for the trip, as always) made promises of McDonald’s and sleepovers, but he ignored her.  And then, Henry, the four year old seasoned veteran, approached us.  He put his hand on Jackson’s arm and said, “I know how you feel, Jackie.  I know it hurts really bad.  I know why you are crying.  That’s how I felt.”  Jackson turned to his brother, swallowing his tears and hiccupping.  He was comforted.  Henry stayed by Jackson’s side and Jackson looked at Henry while the rest of the eight tubes of blood were drawn from his little arm.  Even the nurses were in awe.

 The boys giggled and sang the entire way home.  After a two hour round trip, a three hour appointment, a million questions, two exams, and sixteen total tubes of blood between them, the only tears were those formed from laughing, as they made up songs about their butts.  They had recovered so quickly and I finally understood why.  The day, good or bad, had been normal for us.  It’s what we do.  My children know that better than I do. They’ve been having bad days their entire lives.  But I always encourage them to carry on and we sing and we laugh when it’s over.  If I keep trying to forget, if I keep trying to erase the “bad days,” I’ll end up erasing most of our memories.  And as hard as yesterday was, I never want to forget the connection between my sons that I was able to witness.  It was one of the most beautiful things I have ever seen.

I was not as perky as the boys were, last night.  I was mentally, physically, and emotionally exhausted.  I would have preferred a nice, quiet drive.  But, despite the pounding in my head from an impending migraine, I let the boys sing loudly and I enjoyed their giggles.  I didn’t tell them to be quiet.  The happy voices in the backseat helped me remember things.  I remembered how fortunate I am to have such fabulous children.  I was reminded of how blessed they are to have each other.  And I realized that maybe yesterday wasn’t such a bad day, after all.