Fix me? No, fix you!

Dear Kohl,

I think you’re still sleeping right now, so I thought I’d get a few things off my chest that I have been meaning to tell you.  And my sincere hope is that one day you will be able to read this.

But you see that’s just it.  I have a lot of hopes for you.  I hope that you will be able to read this some day.  I hope that you will be able to walk, talk, work, love, laugh and lead an independent life. In the short term, I hope that you roll, sit up unassisted and start communicating.  These are just a few of the hopes I have for you.

Many of my waking hours (and even some of my sleeping ones) are filled with figuring out ways I can help you do those things.  But having these hopes have become so deeply entrenched in me that they are an obsession. They have overtaken me to the point that I miss things.

Oftentimes, I am so focused on fixing your problems that I sometimes miss the tiny little miracles that occur in front of my face every day.

Whenever I bring your baby sister Amelia to the park, I sometimes feel sad that you can’t yet do what she does. No running around, no sliding, no swinging.  I once tried to place you in one of the swings there that is quasi-adaptable, but you almost fell out and you looked miserable. In my mindless quest to ensure, to the maximum extent possible, you have as many experiences as “typical” kids, I overlook the fact that maybe you just don’t want to do some of those things.  In fact, I think you’re perfectly content just staying home and listening to your music than going to the park.  Maybe you’re emo.  Maybe you want to put on black lipstick. Who knows? The point is I have not been paying attention.

Sometimes, I get so angry and frustrated during the most mundane of daily tasks. As I toil through the additional challenges of bath time or getting you dressed, for example, outbursts occasionally rear their ugly faces.  My mind focuses on the wrong things.

I think about the time you were once called the developmental equivalent of an infant at your first IEP meeting.  I think about how much time we have spent on therapies.  I think about the enormous personal and financial sacrifices we made last year when I made a somewhat compulsive decision to learn a method of working with you that harnesses your brain’s ability to re-wire itself.  And you are not even sitting up yet.  You have not yet discovered your arms so you can help me dress you, I think to myself.

These are horribly, self-absorbed thoughts, and I wish I did not have them.  But I do.  And when I do, I miss things. I forget things.

I forget that while you may not be sitting up without my assistance yet, you’re starting to love this rolling thing and can almost do that by yourself.

I forget about the fact that you are starting to learn how to nod your head “yes” or “no” to questions.  That  has been a total game changer for us and taught us even more about you, including your aspirations to one day be a rock star.

I forget about the fact that you recently started laughing when your mama tickles you, something you had never seemed to respond to before.

I forget about the fact that you and I have started laughing at fart noises together; a male bonding ritual as old as time.

I get so angry and frustrated sometimes when you fall short of doing the things that I believe you are supposed to be doing according to my self-imposed timeline.  Aside from forgetting about the things you are doing, these frustrations are manifestations of my unintentional and subconscious desire to make you “normal.”

I thought about something I did a few years ago that gave me pause and caused me to reflect on that word “normal.”

Remember back in 2014 when your Nana brought over that nice little Christmas plate?  It came with a marker that is used to write a message that Santa could read after he finished scarfing down those cookies.

Well, I drew a huge penis  on it. I did this without thinking about it.  I did this without realizing that the marker was permanent and not erasable.

Before we were finally able to scrub off my “drawing,” your Nana got very upset with me.

“You are 34 years old,” she reminded me.  “That’s just weird.  You need therapy.”

I am not sure why I reflected on that story recently or even why I tell you now, except to remind myself that the category of “normal,” whatever that means, is something I do not fit in.  And my epiphany was that if I am not even close to fitting in that category, I should not be trying to force you in it either.  After all, you are my son and your chances at normalcy, even if you were not born with brain damage, were slim to begin with.

So I guess I will conclude by saying this.  I am deeply sorry for the times where, under the guise of helping you or trying to make it so that you have the opportunity to live a full and rich life, I have really just been trying to make you normal.  I am even more sorry that sometimes I let my emotions and frustrations get the best of me, and I lash out when I am trying too hard to “fix” you.

The truth is, even though we have been together for five years now, I am just getting to know you.  I sense that your true self is only beginning to emerge from beneath the veneer of your many challenges.  Maybe that is part of the magic of being your parent.  A magic that parents of “healthy” or “neurotypical” or “normal” kids do not get to experience.

No, son, you don’t need fixing.  You are perfect the way you are, and I am so excited to continue to find out who you are.

If anyone needs fixing, it’s me.

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9 Responses to Fix me? No, fix you!

  1. Deb says:

    Point well taken.

  2. Nellah says:

    You have a gift for words and writing them down. Put them in a book! Kohl is di blessed not to have a “normal” Daddy. Remember normal is a setting on a washing machine.

  3. Farida Baig says:

    That was beautully written. Both of you are in my thoughts and prayers. I know how you feel and I understand how frustrating it is.

  4. Johanna Chung says:

    You are looking within yourself with honesty & courage and making course adjustments as needed. As a parent that is invaluable. I used to tell my son when he was growing up, sometimes I make mistakes. I am learning how to be a good parent. I never did this before!

  5. Does Kohl just like his dad’s fart noises? Or, does Kohl appreciate a good fart noise regardless of its origin? I mean, can anyone play the fart noise game with him?

    • Andy Chrestman says:

      I would say he likes fart noises generally, but he exhibits a strong preference for my fart noises whether from my mouth or my anus.

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