I know I have it. PTSD. Sometimes it makes me err on the side of caution when it comes to Simon and symptoms. This last week I felt like that parent that calls the Dr too many times for something that's 'clearly' not worth a weekend pager call. Sometimes I'm spot on.
Sometimes it's the PTSD.
I can't imagine going through what Jaime and I went through with a 4 month old baby and not having quite a bit of residual trauma. I know it lingers like a constant low hum in the background of my days. It gets a little louder each time I draw meds, or do a tube feeding. Just a slightly higher frequency, almost imperceptible.
Then there are the moments when it's blaring.
Sometimes a dark and brooding symphony- Our twice or thrice yearly cardiology visits
Sometimes a cacophony- Getting readmitted for pneumonia Dec of 2010
And sometimes it's simply nails on a chalkboard.
Like the last week.
I had two different Dr's- both schooled and extremely well versed in managing 'sick' kids- tell me that Simon's most recent sickness was neither pneumonia or heart related, at least three times on three separate visits. I had a chest x-ray confirm what their stethoscopes were telling them. I had a little boy smiling and asking for bowling on the Wii during his overlapping doses of Ibuprofen and Tylenol.
Still, the sounds coming from his chest during waking and sleeping hours, the wheezing, coughing, and labored breathing, were all too familiar in a nightmarish sort of way.
Those were the sounds of Cardiomyopathy before I knew the word cardiomyopathy. It makes all x-rays and Dr's reassurances fly right out the window and bring on a feeling of terror that I can only describe as that nails on a chalkboard vibration. But it's my fingers on the chalkboard and I can't leave the classroom.
This week has sucked. It's felt like an anvil is swinging over my head and I can't tell how strong the cord is that holds it. I guess the anvil is always there, it has been since Aug 1st 2008. Most days of the last 3.5 years I feel that anvil suspended by a stronger and stronger cord. The stronger Simon's heart gets, the more secure that anvil is. It still dangles just above us but on good days (of which we've had so many) I am standing at such an angle that I hardly even notice or feel the chill of it's shadow. We've had so much sun and warmth and light.
Still it's up there.
On bad days I feel centered underneath it and am aware on a cellular level that it's never going anywhere.
On really bad days, I can feel the cold and know how heavy that fucker is. It feels precarious. Held only by a thin wire that 'you know who' is playing like a violin string with her massive bow. A dissonant high note. A prolonged screeech.
Lying next to a wheezing Simon all night I felt Death come back for a visit to play me some music.
Some part of my rational self knew that she wasn't here to connect with Simon. The Dr's and X-ray told me so.
But that brand new mom of 2008 felt differently. She was back to draw her bow across that string that runs through me. It plays a note of sheer terror and makes me vibrate from my core.
So fucking melodramatic right?
But that's how this PTSD thing works for me. It feels like a violin string that was strung 3.5 years ago and for the most part lies loose. Every once in a while, it gets tightened and played. It's been/I've been so taut for the last 7 days, it's exhausting. I spend almost every waking/sleeping minute of the day close enough to Simon to hear his breathing....when it's not labored and loud.
So when he's not well enough to go to school, you can take out the 'almost' from the previous sentence and get a sense of what the last week has been like. But wait....then add in Simon sleeping in the same bed as us, wheezing, hacking, and gagging from chest congestion, albuterol administered (sometimes easily, sometimes with bear hugs and tears), fevers in the high 103's, and sweating AND THEN you can maybe understand what the last week has been like.
I say maybe because unless you were ever told that your child is in congestive heart failure and if they don't intubate right now or he'll "poop out", then you might not completely get it.
There's a certain kind of PTSD that you have when you get handed the chronic- could be fatal- diagnosis for your child. It's even more out of your control when it's your child and not you.
I know how far we have come from that time. I see it and feel it everyday. Even when those days are filled with awful chest infections (and now newly diagnosed ear infections). AND, there are those moments when time feels multi-layered and it's not that far away at all.
There are those of us that live with anvils, some more secure than others.
There are those of us strung, vibrating with notes that no one else can hear.
I know that I am not alone in this awful awful orchestra.
And I also know that the larger piece of music, made up of these children, is so breathtakingly beautiful and rich and complex, that I don't want to miss a note, even during those more dissonant movements. I still need to listen. To play my part.
Simon is music to my ears, harsh and chalky, and sweet and joy-full.
Still, I'll take his laugh over a wheeze any day.
Less than a month away from being 4!!!! Can you believe it.
Sometimes it's the PTSD.
I can't imagine going through what Jaime and I went through with a 4 month old baby and not having quite a bit of residual trauma. I know it lingers like a constant low hum in the background of my days. It gets a little louder each time I draw meds, or do a tube feeding. Just a slightly higher frequency, almost imperceptible.
Then there are the moments when it's blaring.
Sometimes a dark and brooding symphony- Our twice or thrice yearly cardiology visits
Sometimes a cacophony- Getting readmitted for pneumonia Dec of 2010
And sometimes it's simply nails on a chalkboard.
Like the last week.
I had two different Dr's- both schooled and extremely well versed in managing 'sick' kids- tell me that Simon's most recent sickness was neither pneumonia or heart related, at least three times on three separate visits. I had a chest x-ray confirm what their stethoscopes were telling them. I had a little boy smiling and asking for bowling on the Wii during his overlapping doses of Ibuprofen and Tylenol.
Still, the sounds coming from his chest during waking and sleeping hours, the wheezing, coughing, and labored breathing, were all too familiar in a nightmarish sort of way.
Those were the sounds of Cardiomyopathy before I knew the word cardiomyopathy. It makes all x-rays and Dr's reassurances fly right out the window and bring on a feeling of terror that I can only describe as that nails on a chalkboard vibration. But it's my fingers on the chalkboard and I can't leave the classroom.
This week has sucked. It's felt like an anvil is swinging over my head and I can't tell how strong the cord is that holds it. I guess the anvil is always there, it has been since Aug 1st 2008. Most days of the last 3.5 years I feel that anvil suspended by a stronger and stronger cord. The stronger Simon's heart gets, the more secure that anvil is. It still dangles just above us but on good days (of which we've had so many) I am standing at such an angle that I hardly even notice or feel the chill of it's shadow. We've had so much sun and warmth and light.
Still it's up there.
On bad days I feel centered underneath it and am aware on a cellular level that it's never going anywhere.
On really bad days, I can feel the cold and know how heavy that fucker is. It feels precarious. Held only by a thin wire that 'you know who' is playing like a violin string with her massive bow. A dissonant high note. A prolonged screeech.
Lying next to a wheezing Simon all night I felt Death come back for a visit to play me some music.
Some part of my rational self knew that she wasn't here to connect with Simon. The Dr's and X-ray told me so.
But that brand new mom of 2008 felt differently. She was back to draw her bow across that string that runs through me. It plays a note of sheer terror and makes me vibrate from my core.
So fucking melodramatic right?
But that's how this PTSD thing works for me. It feels like a violin string that was strung 3.5 years ago and for the most part lies loose. Every once in a while, it gets tightened and played. It's been/I've been so taut for the last 7 days, it's exhausting. I spend almost every waking/sleeping minute of the day close enough to Simon to hear his breathing....when it's not labored and loud.
So when he's not well enough to go to school, you can take out the 'almost' from the previous sentence and get a sense of what the last week has been like. But wait....then add in Simon sleeping in the same bed as us, wheezing, hacking, and gagging from chest congestion, albuterol administered (sometimes easily, sometimes with bear hugs and tears), fevers in the high 103's, and sweating AND THEN you can maybe understand what the last week has been like.
I say maybe because unless you were ever told that your child is in congestive heart failure and if they don't intubate right now or he'll "poop out", then you might not completely get it.
There's a certain kind of PTSD that you have when you get handed the chronic- could be fatal- diagnosis for your child. It's even more out of your control when it's your child and not you.
I know how far we have come from that time. I see it and feel it everyday. Even when those days are filled with awful chest infections (and now newly diagnosed ear infections). AND, there are those moments when time feels multi-layered and it's not that far away at all.
There are those of us that live with anvils, some more secure than others.
There are those of us strung, vibrating with notes that no one else can hear.
I know that I am not alone in this awful awful orchestra.
And I also know that the larger piece of music, made up of these children, is so breathtakingly beautiful and rich and complex, that I don't want to miss a note, even during those more dissonant movements. I still need to listen. To play my part.
Simon is music to my ears, harsh and chalky, and sweet and joy-full.
Still, I'll take his laugh over a wheeze any day.
Slumber on the Mama- the best place to slumber
On the way to FairyLand with Grandpa Eddie and Mamaw
Someone's not looking so jolly on the Jolly Trolley
Horseback riding therapy with Maya- I think Simon's got a little crush
(I think Maya does too)
Simon's working on his hipster look
Robot walking in the Redwoods
Dude, those trees are tall
And this is how you hug a tree
Climbing
Less than a month away from being 4!!!! Can you believe it.
3 comments:
No one acknowledges the true PTSD factor that comes from raising a special needs child. Our whole experience is much less dire than yours and yet I can sympathize and understand. I spend my whole day/week/year mapping out the what-ifs and having a multitude of alternatives to manage any surprise that could throw us off course. And, because change is the only constant in life, it is exhausting and ever present. So glad that your little guy is on the mend and am always grateful for pediatricians who know that caring for the concerns of the parents is sometimes equally as important as healing their patients.
I love you and your honesty. I wish more people could be so honest and maybe people will accept to err is human.
I've just come across your blog and I'm so glad that I did. It was as though you have taken the thoughts (and PTSD) right out of my own head and put it out there. Amazing post.
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