"I want to die Mommy. I don't want to live. I hate my life."
Quite possibly the worst words any parent will ever hear from their teenager.
Except my kid isn't even four yet. And I've heard them several times a day every day since Tuesday.
This is not my child.
My child is happy. Hyper. Funny. Bouncy. Resilient.
The little boy who woke up in the hospital after surgery bounces between what my child is...and this depressed, despondent creature who won't get out of bed without force. It took four hours to get him out of bed this morning, and it had nothing to do with the cumbersome casts encasing his legs.
It had everything to do with him not wanting to be looked at, touched, spoken to, etc.
I get that this is a normal phase for anyone to go to after a life-altering surgery like he just had. He went from being able to get up and run about and go potty all by himself to being stuck in casts and a wheelchair, depending on Mommy and Aunty to take him to the bathroom and get him in and out of bed. His independence is gone, which is hard for an independently minded person to deal with, especially when that person is also autistic and depends on everything always being as close to the same as possible. I get that that is hard to deal with.
How does that translate to my not even four year old wanting to die? Where did he even learn to feel like that? Those aren't words we use in this house. Where on earth did he learn that?
To say that I'm horrified and worried is an understatement of vast proportions. I don't know how to make him feel better.
Yesterday (Easter Sunday here in the US), I took him to church for the first time since he got his casts. He was so excited to get to see his friends. Until we got there. Until people gave him strange, pitying looks. Until the kids wouldn't look at him. Then he cried and begged to go into the church with me. Where he cried and cried and cried because people looked at him sadly and asked what he did to his legs, which led to the explanation that he didn't do anything-biology did. Then we went to my parents house for Easter lunch. Where people pitied him and went out of their way to be nice. Which drove him crazy.
Kai doesn't like to be pitied. Most likely because he's never been raised to be pitied; I don't believe in it. He's shown that he's willing to learn to do as much as he can, so he will. There are times he complains that he can't do something because his legs hurt or his hands won't work. I make him show me that he can't before I'll help him. I want him to be independent, and he is. And perhaps I shouldn't have done that, knowing what the future held for him. Knowing that he would, at the least temporarily, be confined to a wheelchair, maybe I shouldn't have taught him to do so much for himself. Maybe I should have waited to instill that independence until after it was all over with. I don't know. I did what I thought was more beneficial to him at the time.
I thought I prepared him for this surgery, for the reality that is his for the next few months or longer. We watched videos of his surgery, talked to the doctor, read books, even looked at wheelchairs and explained that he'd be in one for a while because of his casts. I thought I'd done the best job I could of preparing him for this. It looks like I was wrong. He's in pain a great deal of the time. His sensory issues are going nuts from the casts. Every sense of independence I've instilled in him over the last almost four years has been shredded completely. He is once more at the mercy of those who care for him.
The hospital was awful for him. We were only supposed to be in there until Wednesday morning. I had to raise holy hell just to get us out of there...at 1:00 Friday morning. Middle of the night. "Oh we can't let you go because you don't know how to do his infusions." I call bullshit. I've done them since he was six months old. "Oh. Well we're waiting on his wheelchair." Which can be delivered to our house. Next excuse. "Oh. Well, we have to wait for administration." In that case, you have ten minutes. If your administration hasn't signed off on letting my child leave in ten minutes, I'm leaving with him whether you like it or not.
He wouldn't eat. He wouldn't drink. He wouldn't talk. He wouldn't do anything but lay there. The only time he was even close to normal was in the play room. And then he screamed and cried when we had to leave the play room so he could have his medicine (Nemour's policy-if they're in the play room, there is no medical anything. The kids are to be allowed to be kids in the play rooms). He doesn't understand that his casts can't come off, so he begs and pleads to have them taken off. He is terrified of anything going into his IV, so he fights anytime he has to get his medications. We're three days home from the hospital and I still can't get him to eat. He still won't play like he used to. He still doesn't want to be around people. Except his buddy Leo. He'll play with Leo for a while. He full on kicked Taryn in the face, so hard Taryn has a completely black and blue face on the left side. Just because Taryn wanted to lay in his bed with him.
I'm on the verge of doing the only thing I know to do-putting him back in the hospital. Where they couldn't draw him out of his shell anymore than I could. But I don't know what else to do. This can't go on. He HAS to eat. He has to get out of bed. He has to get back to his life. This isn't forever, although I know for him it seems like it is. My poor boy.
I'm sorry, baby.
Quite possibly the worst words any parent will ever hear from their teenager.
Except my kid isn't even four yet. And I've heard them several times a day every day since Tuesday.
This is not my child.
My child is happy. Hyper. Funny. Bouncy. Resilient.
The little boy who woke up in the hospital after surgery bounces between what my child is...and this depressed, despondent creature who won't get out of bed without force. It took four hours to get him out of bed this morning, and it had nothing to do with the cumbersome casts encasing his legs.
It had everything to do with him not wanting to be looked at, touched, spoken to, etc.
I get that this is a normal phase for anyone to go to after a life-altering surgery like he just had. He went from being able to get up and run about and go potty all by himself to being stuck in casts and a wheelchair, depending on Mommy and Aunty to take him to the bathroom and get him in and out of bed. His independence is gone, which is hard for an independently minded person to deal with, especially when that person is also autistic and depends on everything always being as close to the same as possible. I get that that is hard to deal with.
How does that translate to my not even four year old wanting to die? Where did he even learn to feel like that? Those aren't words we use in this house. Where on earth did he learn that?
To say that I'm horrified and worried is an understatement of vast proportions. I don't know how to make him feel better.
Yesterday (Easter Sunday here in the US), I took him to church for the first time since he got his casts. He was so excited to get to see his friends. Until we got there. Until people gave him strange, pitying looks. Until the kids wouldn't look at him. Then he cried and begged to go into the church with me. Where he cried and cried and cried because people looked at him sadly and asked what he did to his legs, which led to the explanation that he didn't do anything-biology did. Then we went to my parents house for Easter lunch. Where people pitied him and went out of their way to be nice. Which drove him crazy.
Kai doesn't like to be pitied. Most likely because he's never been raised to be pitied; I don't believe in it. He's shown that he's willing to learn to do as much as he can, so he will. There are times he complains that he can't do something because his legs hurt or his hands won't work. I make him show me that he can't before I'll help him. I want him to be independent, and he is. And perhaps I shouldn't have done that, knowing what the future held for him. Knowing that he would, at the least temporarily, be confined to a wheelchair, maybe I shouldn't have taught him to do so much for himself. Maybe I should have waited to instill that independence until after it was all over with. I don't know. I did what I thought was more beneficial to him at the time.
I thought I prepared him for this surgery, for the reality that is his for the next few months or longer. We watched videos of his surgery, talked to the doctor, read books, even looked at wheelchairs and explained that he'd be in one for a while because of his casts. I thought I'd done the best job I could of preparing him for this. It looks like I was wrong. He's in pain a great deal of the time. His sensory issues are going nuts from the casts. Every sense of independence I've instilled in him over the last almost four years has been shredded completely. He is once more at the mercy of those who care for him.
The hospital was awful for him. We were only supposed to be in there until Wednesday morning. I had to raise holy hell just to get us out of there...at 1:00 Friday morning. Middle of the night. "Oh we can't let you go because you don't know how to do his infusions." I call bullshit. I've done them since he was six months old. "Oh. Well we're waiting on his wheelchair." Which can be delivered to our house. Next excuse. "Oh. Well, we have to wait for administration." In that case, you have ten minutes. If your administration hasn't signed off on letting my child leave in ten minutes, I'm leaving with him whether you like it or not.
He wouldn't eat. He wouldn't drink. He wouldn't talk. He wouldn't do anything but lay there. The only time he was even close to normal was in the play room. And then he screamed and cried when we had to leave the play room so he could have his medicine (Nemour's policy-if they're in the play room, there is no medical anything. The kids are to be allowed to be kids in the play rooms). He doesn't understand that his casts can't come off, so he begs and pleads to have them taken off. He is terrified of anything going into his IV, so he fights anytime he has to get his medications. We're three days home from the hospital and I still can't get him to eat. He still won't play like he used to. He still doesn't want to be around people. Except his buddy Leo. He'll play with Leo for a while. He full on kicked Taryn in the face, so hard Taryn has a completely black and blue face on the left side. Just because Taryn wanted to lay in his bed with him.
I'm on the verge of doing the only thing I know to do-putting him back in the hospital. Where they couldn't draw him out of his shell anymore than I could. But I don't know what else to do. This can't go on. He HAS to eat. He has to get out of bed. He has to get back to his life. This isn't forever, although I know for him it seems like it is. My poor boy.
I'm sorry, baby.
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