I admit to watching American Idol. It started when Simon was in the ICU back '08 so I missed the first couple of seasons. I did not see Kelly Clarkson win season 1. I have however, developed a penchant for her brand of empowering pop song. I can't deny that "Breakaway" makes me feel good. Still, she got it wrong with one of her latest. "Stronger" has a nice message and has even been turned into a music video that's gone viral with lots of children with cancer singing about how what doesn't kill you makes you stronger.
On Wednesday though when I was driving to feeding therapy with Simon and the song came on the radio, all of a sudden my throat caught, my eyes welled up and all I could think was, sometimes, what doesn't kill you doesn't in fact make you stronger.
It makes you tired all the time. It makes your life so different and unrecognizable from what you ever imagined. It makes you live with a constant undercurrent of fear and post traumatic stress. It brings along regular irritability, systems that don't take your experience into consideration, friends and family that sometimes just don't get it, and a feeling of it all going on and on without end.
Sometimes what doesn't kill you changes your life in ways that make you have to find the light in the darkness BUT it's the darkness that feels pervasive, not the light.
Today I want to tell Kelly that she sucks. Cardiomyopathy sucks. Developmental and physical delays suck. It sucks that there is no end in sight to medications, therapist and doctor appointments. It sucks that I continue to feel 'other' when it comes to Simon's peers, his schooling, his day to day functions. It doesn't make me feel stronger. It doesn't make me walk taller or feel a little lighter. It makes me feel helpless and alone. It makes me feel exhausted and so heartbroken for my son.
The sick part is that it's mostly me. Simon has never known anything else and so there's not this huge sense of loss or contrast for him. It's my own attachment to what was or might have been pre diagnosis. It's this darn attachment thing. To that other life, I both had and imagined.
Folks in our special needs community often come back around to the conversation of Life (or God, or whatever) not giving you anything you can't handle. Today that just feels like bullshit. Today I feel weighed down by this life and I'm not getting stronger but more and more hardened or flattened. Tomorrow might be different but today I have no patience for it. I know that I genuinely like people but when I have to go through two hours on the phone explaining why they should not deny my son feeding therapy, I end up feeling more like people suck.
When Simon comes home and cannot stop asking me the same question over and over, looks to destroy things in our sublet, and begins to poop while sitting on the couch, all I want to do is turn on the TV for him and leave.
I don't want to have to explain over and over again why it is in fact medically necessary for my son to get off his reliance on a feeding pump. I don't want to think about how he still can't hold a pencil or run or understand more than one direction at time. I don't want to police his every bite or continue to wonder if he knows how to go to the bathroom on his own reliably. I don't want to think about fighting insurance companies while also looking into private schools that we'll need a 90% scholarship for that STILL may not accept him let alone provide the right kind of education for my kid who comes with medical and developmental issues.
I'm fed up balancing the stay-in-the-moment way of living with the all too real possibility of heart decompensation, transplant, and death. As much as I appreciate and love my various heart, eating, Special Needs communities.....I want out.
I'm really really tired of it. Like really.
I think I'm even more tired and fed up that I don't ever get to say "I'm done. Thanks for all the lessons. I'm a better for it ....aaaand scene."
It feels like I don't/won't ever get to do that.
Simon ran almost an entire lap around the tennis courts by our house this afternoon. He was so happy! I captured it on video. It's his special kind of running but he did it. I had this moment of lightness when he was coming in at the end. A full lap
And within seconds he coughed and gagged and his eyes rolled back into his head. It was only a split second (or maybe 3) but there was the roller coaster feeling of elation, the drop and terror that's followed immediately by a sense of relief that this is not 'the' time. It's exhausting.
So Kelly Clarkson, and all you other upbeat people that are going to tell me that it's really making me stronger and that only special people get special needs kids to parent and that we are never given more than we can handle....suck it.
Maybe it's the construction going on at my house. Maybe it's being displaced for three weeks and two weeks more. Maybe it's the insurance companies and their 'let's see if she tires and lets it go' mentality. Maybe it's the stupid worksheet homework my son has to do in Kindergarten. Maybe it's the heart disease that could kill him or the low muscle tone, the speech delays, autism spectrum, chronic constipation, feeding tube, daily medication bullshit regiment.
Maybe.
Maybe it's that I just haven't been to yoga in 3 weeks.
Sorry Kelly. It's not personal.
On Wednesday though when I was driving to feeding therapy with Simon and the song came on the radio, all of a sudden my throat caught, my eyes welled up and all I could think was, sometimes, what doesn't kill you doesn't in fact make you stronger.
It makes you tired all the time. It makes your life so different and unrecognizable from what you ever imagined. It makes you live with a constant undercurrent of fear and post traumatic stress. It brings along regular irritability, systems that don't take your experience into consideration, friends and family that sometimes just don't get it, and a feeling of it all going on and on without end.
Sometimes what doesn't kill you changes your life in ways that make you have to find the light in the darkness BUT it's the darkness that feels pervasive, not the light.
Today I want to tell Kelly that she sucks. Cardiomyopathy sucks. Developmental and physical delays suck. It sucks that there is no end in sight to medications, therapist and doctor appointments. It sucks that I continue to feel 'other' when it comes to Simon's peers, his schooling, his day to day functions. It doesn't make me feel stronger. It doesn't make me walk taller or feel a little lighter. It makes me feel helpless and alone. It makes me feel exhausted and so heartbroken for my son.
The sick part is that it's mostly me. Simon has never known anything else and so there's not this huge sense of loss or contrast for him. It's my own attachment to what was or might have been pre diagnosis. It's this darn attachment thing. To that other life, I both had and imagined.
Folks in our special needs community often come back around to the conversation of Life (or God, or whatever) not giving you anything you can't handle. Today that just feels like bullshit. Today I feel weighed down by this life and I'm not getting stronger but more and more hardened or flattened. Tomorrow might be different but today I have no patience for it. I know that I genuinely like people but when I have to go through two hours on the phone explaining why they should not deny my son feeding therapy, I end up feeling more like people suck.
When Simon comes home and cannot stop asking me the same question over and over, looks to destroy things in our sublet, and begins to poop while sitting on the couch, all I want to do is turn on the TV for him and leave.
I don't want to have to explain over and over again why it is in fact medically necessary for my son to get off his reliance on a feeding pump. I don't want to think about how he still can't hold a pencil or run or understand more than one direction at time. I don't want to police his every bite or continue to wonder if he knows how to go to the bathroom on his own reliably. I don't want to think about fighting insurance companies while also looking into private schools that we'll need a 90% scholarship for that STILL may not accept him let alone provide the right kind of education for my kid who comes with medical and developmental issues.
I'm fed up balancing the stay-in-the-moment way of living with the all too real possibility of heart decompensation, transplant, and death. As much as I appreciate and love my various heart, eating, Special Needs communities.....I want out.
I'm really really tired of it. Like really.
I think I'm even more tired and fed up that I don't ever get to say "I'm done. Thanks for all the lessons. I'm a better for it ....aaaand scene."
It feels like I don't/won't ever get to do that.
Simon ran almost an entire lap around the tennis courts by our house this afternoon. He was so happy! I captured it on video. It's his special kind of running but he did it. I had this moment of lightness when he was coming in at the end. A full lap
And within seconds he coughed and gagged and his eyes rolled back into his head. It was only a split second (or maybe 3) but there was the roller coaster feeling of elation, the drop and terror that's followed immediately by a sense of relief that this is not 'the' time. It's exhausting.
So Kelly Clarkson, and all you other upbeat people that are going to tell me that it's really making me stronger and that only special people get special needs kids to parent and that we are never given more than we can handle....suck it.
Maybe it's the construction going on at my house. Maybe it's being displaced for three weeks and two weeks more. Maybe it's the insurance companies and their 'let's see if she tires and lets it go' mentality. Maybe it's the stupid worksheet homework my son has to do in Kindergarten. Maybe it's the heart disease that could kill him or the low muscle tone, the speech delays, autism spectrum, chronic constipation, feeding tube, daily medication bullshit regiment.
Maybe.
Maybe it's that I just haven't been to yoga in 3 weeks.
Sorry Kelly. It's not personal.
