Hard Times and The Wrong Thing to Say

Goddamn sometimes life hits you like a ton of bricks.

Our tiny GNA01 community is getting very close to losing a member.  There is a sweet young boy, almost 7, who was just moved to hospice care.  GNA01 is a particular kind of beast that hits all of these kids in some really similar ways, but seems to rear its ugly head acutely harsher on some than others.  For this beautiful kid, his central nervous system is telling his body that it is time, and as his body follows, his spirit is staying strong.  I am not one to pray, but for J, and for J’s parents, who Nikki and I share a surreal bond with even though we’ve never met, I’ll give what little I can in hopes that his days are full of the kind of joy and love that I know that these kids feel.

We have heard that GNA01 kids are incredibly emotional.  We have heard it from other GNA01 parents, have read that it is the case, and have experienced it with Mira.  We are thankful that our response to this diagnosis has been humble acceptance, and a personal willingness and familial push to be the strong, happy, and loving parents our kid needs us to be.  Consequently, Mira is strong, happy, and loving.  I need to repeat that because saying it once doesn’t relay it with enough force – Mira is STRONG, Mira is HAPPY, and Mira is LOVING.

Mira is stronger than you, reader.  Mira is stronger than me, her father, and Mira is stronger than Nikki, her mother (though not much).  Mira does not give up.  She pushes so hard in her therapies, and she doesn’t give a flying fuck about her disability.  She wants to be a part of everything that she can be a part of, and she doesn’t complain.  She works and works and works.

Mira is happier than you, reader.  Mira is happier than me, her father, and Mira is happier than Nikki, her mother.  Mira smiles, Mira laughs, Mira wonders, Mira gazes adoringly at Christmas decorations and trees and Elmo and pictures of her cousins and so much more.  She doesn’t care that her body won’t let her do some stuff, she just cares that she stuff that she is doing is fun and interesting.  She is not stressed, she is not jealous, she is not angry.  She is happy.

Mira is as loving as any, and more loving than most.  I’m not willing to say she holds more love than Nikki or I, but she holds just as much.  She loves intensely and without question.  She loves the weird woman at the grocery store who smiles at her, she loves her stuffed animals Jarles and Sadie, and she loves us so so so so much.  She doesn’t love with jealousy, she doesn’t love with conditions, and she doesn’t love with limits.

I know that J is strong, is happy, and is loving, too.  I know that these kids just are.  Every parent we’ve heard from says the same thing about their kid.  These kids are better than us, are free from all of the things that terrify us and cause us to act out of anything other than love and strength, and we work to live up to them and what they offer us and demand from us.


A couple of things happened in the past month or two that I want to get off of my chest.  The first was my own fault, and the other two left me mad at myself for not knowing how to respond.

The first was at Halloween.  We took Mira trick or treating with some amazing parents we know who have 2 neurotypical kids and 1 kid with a genetic mutation.  Its not GNA01, but they understand the emotional, physical, and financial battles we go through.  They are great, and we are lucky to know them and their wonderful kids.  But, while trick or treating, I caught myself doing something that I will never do again.  I apologized for my kid’s disability.  What happened was that we walked up to a house that had stairs to get to the porch, and I walked up to the porch and said something to the effect of “I’m sorry, but could you come down here as my daughter is in a wheelchair.”  The instant I said it I felt bad, and knew that I messed up.  Not the end of the world, but I will never again apologize for her disability.  If that person needed an apology from me in order to be decent, than they can keep their candy.  They didn’t, and they wanted to come down to see her.  The mistake was solely my own, but I learned something and will not make that mistake again.

The second was something that happened with family.  Someone was visiting, and we had dinner with them.  During the dinner, we were talking about Mira, because Mira is all that we talk about.  He said something like “I’m surprised that she follows me with her eyes as much as she does!”, and then shortly thereafter insisted to me that she was intellectually disabled despite me stating that I think she is bright.  At the same time, another family member was shocked that Mira got upset when a cousin of hers tried to get into her stander.

These things were upsetting to me because it felt like Mira’s own family was denying her her full self and steadfastly refusing to recognize her for who she is.  Why wouldn’t she follow someone with her eyes?  Her eyes work fine, and she is fully engaged in her surroundings.  She’s not comatose, and why would you think she was?  And why insist that she’s cognitively disabled?  She has been learning to use an iPad and was quick to pick it up, she understands what we say to her, understands what she wants, and understands what is going on.  Just because she can’t talk doesn’t mean she can’t understand?  And, why wouldn’t she get mad that her cousin was trying to get in her stander?  Its HERS, it is like an extension of her as she relies on it to help her stand, and she’s 2 years old and selfish.  Why would that be so surprising?

The first individual doesn’t see her often, so I suppose I should brush it off because his opinions or ideas about her haven’t been formed from first-hand experience.  But the second individual sees her regularly, and shouldn’t have been surprised that she was doing something that was age appropriate.  My regret was that I didn’t respond properly, and I further regret that I still don’t know what a proper response is.

As we grow along with Mira, I better learn how to respond, how not to respond, and how to tell when a response is appropriate.  To the old man who says “that’s a fancy stroller! I wish I had something to roll around in like that!”, to the woman who says “she looks like she’s ready for a nap!”, to the dipshit on the Plaza who says “what a great parking spot!” as I’m taking her wheelchair apart to put it in the car, I am learning what to say and if I even need to say anything at all.  When we started this journey, I think I expected people to know a lot more than they do, and to be more sensitive than they are.  The truth is, they don’t and they aren’t, and before having Mira, I was right there with them.

But, somewhere along this learning path for me and everyone in Mira’s life, we may have to learn lessons we don’t want to learn.  It is impossible for me to not look at beautiful J and read his mother’s words and not be flattened.  I don’t know what the future holds, but I do know what I do not want it to hold.  Mira’s affectations are decidedly less pronounced than J’s, but the silence of the unknown is the most deafening thing I have ever had to consider.


To J – I don’t know you, but I love you and support you.  To J’s parents – I don’t know you, but I love you and support you.  Let us know what we can do for you, we’re here for you all the way.

  • James

1 thought on “Hard Times and The Wrong Thing to Say”

  1. Thank you guys for blogging. I rarely comment, but I always read. I admire you 3 more than you know. Love you, guys!


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