Alice in Wonderland

“I don’t know how you do it.”  I hear people saying all the time to me and to other parents of children with great disabilities. 

The response is always, “you just deal with it”.  I think we all deliver that line like robots.  It’s the easiest way to explain the inexplicable situation in which we found ourselves. 

The truth is this.  We are not stronger than those who have “normal” families.  We are not the special chosen ones with divine challenges that only we can handle.  We have not suddenly found the meaning of life simply because we are working harder than we did before.  

The truth is we find ourselves wondering the same thoughts of others with big challenges. 

When I read about other I-Cell families with kids who are equipment dependent, or suffering organ failure, or hospitalized regularly, I say, “I cannot imagine what they are going through.”  When I hear the news of another passing (and there have been so many over that past few months), I am hit with renewed shock and terror.  I say again, “I cannot imagine what they are going through.” Really?  I can’t imagine it?  It’s true, I cannot really imagine it.   

Our minds usually stop us from imagining unnecessary damaging scenarios.  I don’t mean that we cannot be paranoid.  Clearly we have internal precautionary warnings that protect us from making ghastly mistakes.  I do not mean that we cannot dream up terrifying tales.  Stephan King has made a living off of it.  I am talking about the very realistic and likely immanent realities that I am thankful for being outside of the realm of my imagination. 

This weekend, I helped a friend with a birthday party that had the theme of Alice in Wonderland.  And this weekend, Niko is sick with pneumonia. 

Whether it’s morbid curiosity, a natural propensity to expect the worst, or being in proximity of those who are suffering, whatever the reason, if your mind happens to wander down the rabbit hole seeking for terrifying possible outcomes, you are usually met with a shut door.  On the door there is a sign that reads, “Keep out”, “Do not enter”, “Not yet”, or simply “Fuck off!”  And it is with great gratitude that you should retract that curiosity.

What you do not want is the answer to those curiosities.  You do not want that time to come, where you are no longer outside those doors.  You do not want to chase that rabbit to unlock all those doors.  Because behind those doors, it’s not cookies that read, “Eat me” or bottles that read, “Drink me.”

This weekend, as we face Niko’s first real dangerous complication, I realize that this is the first time I’m confronted with the what-if.  We have never had any close calls.  We have not had to make any double-sided wrong decisions at the hospital.  I have never thought, “I could lose her… today.”  I have not seen the other side of those doors of morbid curiosities.

Niko has had a fever for three days.  She has pneumonia in both lungs.  She has an ear infection.  And she’s stopped feeding and drinking.  When she does try to take a little water, I can hear the sickening sounds of gurgling and hard bubbles in the throat and chest.  She throws her body in an angry fit from the pain and turns purple.  She cannot sleep.  She is suffering.  I have a physical lump of worry stuck in my throat and I want to vomit to flush it out.  She is on antibiotics now.  I have added a new machine to the collection of loud and obtrusive devices in the house.  She has a nebulizer now, which provides the medicine albuterol in the form of a mist, which she inhales.  I’m not even sure what it does, but I hope it helps to clear her lungs. 

I have come to the conclusion that when you come to the point where people wonder “how you do it.”  All you can do is deal with it.   

Here is a video of Niko before she got sick.  This is from my point of view, with Niko as close to me as possible.  So close that I can inhale her.