During our first few days in the hospital after Nico’s diagnosis, our oncologist or the fellow said at some point, “you are adjusting to your new normal.” Adjusting. New normal.
There is no normal. Unless, “normal” has been redefined to mean: Nico’s hideous daily poisonings, administered almost entirely by Nico’s mom; bi-weekly spinal taps where more poison can be injected into his cerebrospinal fluid; monthly bone marrow aspirations that cause Nico so much pain he can’t sleep on his back or move for days. Normal is a tube sticking out of Nico’s arm. Normal is fearing that the cold that I got this week will kill my son. Normal is scanning lab reports for neutrophil and blast counts. Normal is reading about cancer in our spare time. Normal is antibiotics, steroids and prilosec (to prevent ulcers caused by the steroids). Normal is watching Nico, once the friendliest, care-free and happiest little creature I have ever known withdraw to his closet and scream at us to “go away” because he is tired of endless medications and line-flushings. Normal is holding my two-year old as he whimpers “bed” because he is too tired and in pain to play. Normal is the momentary and now extremely rare flash of glee on Nico’s face when he is able to walk from his bed to the kitchen exclaiming, “Daddy, Mommy, Nico walking!” Normal is the unbidden and uncontrollable resentment that wells up when we see other parents with healthy children disciplining them or snapping at them for some insignificant infraction. Normal is the realization that karma does not exist. Normal is wondering if we will go bankrupt before Nico is finished with treatment. Normal is crying every day. Normal is worrying that our child will suffer for three years, only to relapse and have to do it all over again. Normal is wondering if our son will ever laugh again.
There is nothing now but cancer. It informs and dominates our entire existence. Every decision, no matter how minute, is preceded by the inquiry, “How will this affect Nico’s immune system?” Things that used to be handled with a little Tylenol and equal doses of love and care are now emergencies. Temperature over 100.4? Then we go to the hospital for whatever wretched series of tortures await along with the agony of wondering if his fever is life-threatening. Got a cold? Get him to the hospital, because that can kill him, too. We have called the Clinic so many times they must know it’s us on the phone without asking our names.
We live in a constant state of depression punctuated by intermittent avalanches of fear and panic. Nico cannot play with other children, or even be in proximity to them. We had to withdraw him from his pre-school that he loved and he does not understand why. He cannot even be around adults who are habitually around children, or really, around any adults other than his parents. Shannon driving Nico in the car around town for a few minutes is his sole outside-of-the-house pleasure. Today, Nico wanted to walk, but was too weak to put on his shoes. He asked us to put on his shoes and simply carry him around the house. That is a good day in our new “normal”.
We are enmeshed in a prison of microscopic cells, but the walls might as well be concrete and barbwire. How does parent adjust to that?