Fourteen: just the way it is

What is this experience we share, Savannah and I?

We have these fates that intertwine like the tubing that feeds her, that must be untangled from the sterile bag each morning, filled, cleaned after each use, time and time again, day after day, year after year.  Together we measure our days by the cc.  We are woven together in a maddening level of minutiae that tries my patience and leaves my head empty of the thoughts I would rather think.

I am more eloquent in my mind.  When I begin to write about our lives, the words fumble over each other and I feel that I cannot convey the true nature of our relationship in mere words.  The best I can do is tell you a story and hope you understand because I don't know that I understand myself:

When people discover that I have a fourteen year old daughter, they want to share in the bond between parents of teenagers.  They chuckle and say, "Oh, you have your hands full."  I say, "Yes, I do."  They say, "There is a special place in heaven for fathers of teen-aged girls."  I say, "Yes, there is."  I usually smile and give them a knowing chuckle... a lying chuckle that they interpret as camaraderie.  But it isn't.  It is the ironic chuckle of a man who doesn't want to spoil this nice person's moment, who doesn't want to sadden their day with my dreary realities.  What I would like to say is, "I agree, fourteen year old girls are a handful, especially when you have to change their diaper."  However, that would not be fair of me.  It would be like punching someone in the face who's only crime was being friendly.

I change the subject.

It is not that I am embarrassed... because I am not.  I am very proud of Savannah.  She is the bravest person I know, and I wish to tell everyone so.  But I don't.  Because they don't understand.  They can't understand... not unless they have walked the floor all night with a child they thought would die in their arms, gone without sleep for years, forgotten even who they were and started all over.  Those people I can tell.

Perhaps I can tell you... and that is what this blog is for.

When I finally interrupt the other person who wants to talk more about fourteen year old girls, I say, "My fourteen year old is significantly disabled."  Their faces search mine to see if I am perpetrating some sick joke.  When they realize I am serious, they say, "Oh, I'm sorry."  I say, "Don't be.  There is nothing to be sorry about.  This is just the way it is."

#disability #specialneeds #fatherhood #parenting #dad #teenager


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