Rights and Other Rants

September 3, 2013.

The day Kelli Stapleton made a decision that she can never take back.

The day she, an advocate and blogger for autism and related issues, decided that she and her autistic daughter Issy would be better of "going to heaven."

I don't go off about these hot button issues often. I try to keep what I write about MY sons, and OUR life, not the choices someone else made, because I am not Kelli, and I do not know what drove her here, to the point she reached. I imagine she was scared, and desperate, and, much like those who are suicidal, felt she had no other choice. And I know she says she regrets what she did, and that she does not feel worthy to beg her daughter's forgiveness.

This post is not about her. Well, it is, but it isn't.

This post is about the condoning of what she tried to do. Let's put her aside, let's put her interviews aside, and let's focus on the bare facts: a mother tried to kill herself and her child.

And there are those who are condoning what she tried to do.

There are those who say it is okay, because Issy is disabled and that makes life hard.

No one is going to argue that it does, indeed, make life hard. No one is going to argue that fact.

But I'm going to argue this: if Issy Stapleton had NOT been disabled, would these people still condone what Kelli did? Would it still be okay?

And the answer to that is NO. The world would be disgusted, outraged, infuriated. There would be no forgiveness for Kelli, no "We understand" for Kelli. There would be mobs calling for justice, for her blood.

But because Issy is autistic, because Issy was aggressive, it's okay? It's okay to deprive her of the basic right to live?

Because Issy has rights, folks. Issy had a right to expect her mother to keep her safe, not hurt her. She had a right to expect that she could safely get in a vehicle with her mother and NOT wake up three days later in the hospital. She had a right to expect that she could fall asleep and wake up perfectly fine, as she has every other day of her life.

Most importantly, Issy has a right to LIVE.

Anyone who says otherwise...I pray you never have a disabled child, because I fear for that child's life if you do.

You who condone what Kelli did, you who decided that Issy does not deserve to live...

Would you condemn my sons, then, to death? Because neither of my sons are exactly "normal." This blog started for K. On Friday, Byrd was diagnosed with autism. Do they not deserve to live? Does Byrd deserve to live, because his only problems are ASD and SPD? Does K deserve to die because his problems run deeper, and are much more complex, and because is not as high functioning as his little brother? Do my sons deserve to die because they are not "normal?" Would you sign their death warrants?

Because by condoning what Kelli did, by saying it was okay because of the disability her daughter lives with, you're saying that MY children, who have the SAME disability, do not deserve to live.

And I am not okay with that.

Just like neurotypical children, Issy, my sons, the other children and adults living with disabilities, DESERVE TO LIVE. They have the RIGHT to live.

And NO ONE, be it a parent or a caregiver or a stranger, has the right to take that life from them.

Putting On My Mom Face

Yes, hello Dr. Frick. Yes, I know K has an appointment with your office in three weeks. Yes, I know we'll be discussing tibial torsion surgery. Yes, thank you, we'll see you then.

That's what I said on the phone.

Here's what I wanted to say, and probably will in person.

Yes, doc, I'm aware that we need to discuss K's legs and what we're going to do to keep them functional as long as possible. I'm aware that you are good at what you do. And I get that you care about my son and what happens to him.

I care, too.

I care that he remembers spending months in casts, that he didn't understand why he still had casts on after his surgery. I care that he views casts as a form of torture. I care that next year he'll be starting kindergarten. What kid wants to start kindergarten with his legs in casts and metal screws in his bones?

I care that right now, I have a little boy who can ride his bike, and walk, and run. He's used to his braces and wears them without too much fuss.

So, no, good sir Doctor Frick, I do NOT want to talk about his surgery.

I want to pretend, for a little while at least, that my little boy can have the life he deserves.

I want to forget, just for a little while, that life has thrown him a very rough hand indeed.

I want to watch him run and laugh and play with his little brother.

Because it wasn't you who had to deal with the aftermath of the first time he was cast, or the second, or the third, fourth, fifth, sixth, seventh, or even eighth. It wasn't you who had to deal with the fall out of his surgery.

It was me.

And I still can't shake the image of my son having a panic attack in the OR, because of course I sucked up my fear and my nervousness and put on my mom face and I went in with him. Until your nurse pulled me away from him because he couldn't breathe in his panic. And I went back to the waiting room, and collapsed into my mother's arms.

And I still can't shake the horror of seeing him in recovery. I have nightmares about his screams. The sight of my beautiful little boy in casts all the way up to his hips, screaming in fear and pain...the sound of those screams...the tears...the begging me to take it away, get the casts off him, take him home, get him his daddy who couldn't be bothered to come down when my best friend offered to bring him with her, because of course she was there...of course she was...she's never missed anything like that and never will if she can help it...

And I still can't shake the horror of the morning after surgery. The seizures...the sound of my three year old son's voice informing me he didn't want to live anymore...watching nurses restrain him because I couldn't help him...watching him lay there day after day, not eating, not talking, not looking at me...he didn't want to do anything. That surgery stole him from me all over again.

And I don't want to think about doing it again.

Because I'm selfish, and I'm scared, and damn it I'm only 24 years old, and he's only 4, and how is this fair?

I don't want to think about what you're going to do to him. What you have to do to him. I don't want to face it. And I certainly don't want to talk about it. I want you to do it. I want you to set it all up, and just call me like the day before and let me know when I need to have him to the hospital, because really I can't go through months of worry and counting the days and weeks and praying that he wouldn't bleed out on your table, because honestly, surgery on any child is a nightmare, but surgery on a child with a blood disorder can be a death sentence. And no parent want the guilt of knowing they signed their child's death sentence.

So, no. No, I don't want to talk to you, and no, I don't want to go to your office.

Because I'm selfish, and I'm young, and I'm scared, and this really just too much.

But.

But, I'll put on my mom face, and we'll be there, and we'll talk about it, and we'll decide what's best for him, and he'll sit there oblivious to what's going on around us because he's obsessed with your name tag and the way it snaps back to you on its little cord when he pulls on it. And I'll load him back up in my truck and take him home, and try not to stare at the calendar and count the days, and try not to cry every time I watch him walk, because one mistake and he's paralyzed. One mistake, and I won't be bringing him home again.

And the time will come, and I'll swear up and down I'm not walking him to the OR, because I can't watch it all over again, but we both know I'll be there. We both know I won't leave him alone for a second longer than I have to. And we both know you'll find me, hours later, in the waiting room, holding his Tow Mater pillow, probably crying into it, with my mother and my best friend, to tell me how it went. And we both know no matter what you tell me, you'll watch me cry some more, either out of joy or out of sadness.

And we both know that's just the beginning.