losing it all...
We are falling fast. Hard and fast.
I can't even begin to explain the extent of the regression we have found ourselves in....and the worst part of it all- I can't find the cause.
It's been two weeks of horrible aggression, non-compliance, slamming doors (there isn't a picture on our walls that is straight), scrunched faces, throwing objects...and the brain debris that comes out of his mouth with cruel, mean comments makes it all even worse.
This weekend, after tearing his room apart Friday night, including shoving his mattress off his boxspring, he told me I was "ugly" and he "never even loved me anyways."
After his first major rage Friday night, I ended up standing in the doorway- calm, for some unknown reason- and felt the energy sucked from me as I saw his room just as I had 5 years ago when we were in our darkest days of this disease.
I went against every ABA principle and took him in my arms and rocked him in the rocker. He started balling, telling me he "loved me" over and over again, but then would giggle in between his sobs. His manic state continued to worry me as we left him with a babysitter (after he had finally calmed down and we were over an hour late to Bible study), and I couldn't even keep it together among our friends. Every conversation led my mind to a life we used to live, and one that was slipping further and further away.
Sunday we had another rage that ended with clothing removal, more door slamming, and screaming at the top of his lungs. We wanted to sing happy birthday to our grandpa B, and the only thing they heard was an erratic child.
But the gut wrenching conversation came today. His classroom teacher came to me after school and told me that Hunter had an incident in PE (mind you, after throwing objects in the classroom, mouthing off to the teacher, etc). A friend, who is in all his special classes, and who has been nothing but kind to Hunter, beat him in a running race.
"You're fat!!" Hunter yelled to the boy.
My mommy heart, my personal heart, my everything smashed. My son was the bully.
When the PE teacher talked to his teacher after the incident, Hunter screamed at the top of his lungs, unlike anything she had every heard before. She actually had to tell him to breathe because he wouldn't stop.
I can't blame it on strep. Every test is negative.
I can't even blame it on Autism. Kids with Autism may not understand how words can truly affect person's feelings, but he used it and wanted to hurt this boy.
I feel like such a failure as a parent, especially when "empathy" is a trait that I feel I have exemplified and shown my children in various ways.
I made him write a sorry note today, and we took his allowance jar to CVS to purchase a book of stickers for him. He drew a picture of the little boy and him holding hands, and seemed to truly be apologetic for causing him to hurt.
Even though he has every sign of strep (acute behavioral change, increased urination frequency (going up to 6 times in the afternoon at school), sandpaper rash on chest, sore throat, headache, poor handwriting)-- the rapid strep, culture, and CBC all tell me that nothing is wrong.
Nothing is wrong. Lymphocytes slightly elevated, but nothing that concerns anyone.
NOTHING IS WRONG-
yet everything is wrong.
We are scheduled to see his neurologist Friday to attempt to find answers, or a plan of attack (which could possibly include an admit for 2 days of IV steroids). If I would have taken him to the hospital Friday night, they would have admitted him to the psych ward.
I can't remember when things were so hard. I haven't even begun to define the way it is affecting our other children. Peyton told me the other day that "the infection in his (Hunter's) brain was winning, but we don't want it to win."
And sweet Paige...she has such bad anxiety that the thought of leaving the house is causing tears and meltdowns. She's been to the counselor's office twice this week. I'm trying so hard to keep my own anxiety about our situation at bay, and seeing her so upset is so unfair, when she should be living a carefree childhood. I had her write out her worries for me (I told her to write anything that came to mind, whether it seemed big or small)- and she wrote me three pages of notebook paper in 10 minutes.
I keep feeling like we are being tested.
Did we get cocky?
Did we stop praying when things got easy?
Did we forget how life used to be prior to IVIG?
Did we think we could actually beat this monster?
We are losing. Not just our sanity and happiness,
but our son.
"Even If"- Mercy Me
https://youtu.be/B6fA35Ved-Y
They say sometimes you win some
Sometimes you lose some
And right now, right now I'm losing bad
I've stood on this stage night after night
Reminding the broken it'll be alright
But right now, oh right now I just can't
It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
They say it only takes a little faith
To move a mountain
Good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone
You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone
It is well with my soul
It is well, it is well with my soul
I can't even begin to explain the extent of the regression we have found ourselves in....and the worst part of it all- I can't find the cause.
It's been two weeks of horrible aggression, non-compliance, slamming doors (there isn't a picture on our walls that is straight), scrunched faces, throwing objects...and the brain debris that comes out of his mouth with cruel, mean comments makes it all even worse.
This weekend, after tearing his room apart Friday night, including shoving his mattress off his boxspring, he told me I was "ugly" and he "never even loved me anyways."
After his first major rage Friday night, I ended up standing in the doorway- calm, for some unknown reason- and felt the energy sucked from me as I saw his room just as I had 5 years ago when we were in our darkest days of this disease.
I went against every ABA principle and took him in my arms and rocked him in the rocker. He started balling, telling me he "loved me" over and over again, but then would giggle in between his sobs. His manic state continued to worry me as we left him with a babysitter (after he had finally calmed down and we were over an hour late to Bible study), and I couldn't even keep it together among our friends. Every conversation led my mind to a life we used to live, and one that was slipping further and further away.
Sunday we had another rage that ended with clothing removal, more door slamming, and screaming at the top of his lungs. We wanted to sing happy birthday to our grandpa B, and the only thing they heard was an erratic child.
But the gut wrenching conversation came today. His classroom teacher came to me after school and told me that Hunter had an incident in PE (mind you, after throwing objects in the classroom, mouthing off to the teacher, etc). A friend, who is in all his special classes, and who has been nothing but kind to Hunter, beat him in a running race.
"You're fat!!" Hunter yelled to the boy.
My mommy heart, my personal heart, my everything smashed. My son was the bully.
When the PE teacher talked to his teacher after the incident, Hunter screamed at the top of his lungs, unlike anything she had every heard before. She actually had to tell him to breathe because he wouldn't stop.
I can't blame it on strep. Every test is negative.
I can't even blame it on Autism. Kids with Autism may not understand how words can truly affect person's feelings, but he used it and wanted to hurt this boy.
I feel like such a failure as a parent, especially when "empathy" is a trait that I feel I have exemplified and shown my children in various ways.
I made him write a sorry note today, and we took his allowance jar to CVS to purchase a book of stickers for him. He drew a picture of the little boy and him holding hands, and seemed to truly be apologetic for causing him to hurt.
Even though he has every sign of strep (acute behavioral change, increased urination frequency (going up to 6 times in the afternoon at school), sandpaper rash on chest, sore throat, headache, poor handwriting)-- the rapid strep, culture, and CBC all tell me that nothing is wrong.
Nothing is wrong. Lymphocytes slightly elevated, but nothing that concerns anyone.
NOTHING IS WRONG-
yet everything is wrong.
We are scheduled to see his neurologist Friday to attempt to find answers, or a plan of attack (which could possibly include an admit for 2 days of IV steroids). If I would have taken him to the hospital Friday night, they would have admitted him to the psych ward.
I can't remember when things were so hard. I haven't even begun to define the way it is affecting our other children. Peyton told me the other day that "the infection in his (Hunter's) brain was winning, but we don't want it to win."
And sweet Paige...she has such bad anxiety that the thought of leaving the house is causing tears and meltdowns. She's been to the counselor's office twice this week. I'm trying so hard to keep my own anxiety about our situation at bay, and seeing her so upset is so unfair, when she should be living a carefree childhood. I had her write out her worries for me (I told her to write anything that came to mind, whether it seemed big or small)- and she wrote me three pages of notebook paper in 10 minutes.
I keep feeling like we are being tested.
Did we get cocky?
Did we stop praying when things got easy?
Did we forget how life used to be prior to IVIG?
Did we think we could actually beat this monster?
We are losing. Not just our sanity and happiness,
but our son.
"Even If"- Mercy Me
https://youtu.be/B6fA35Ved-Y
They say sometimes you win some
Sometimes you lose some
And right now, right now I'm losing bad
I've stood on this stage night after night
Reminding the broken it'll be alright
But right now, oh right now I just can't
It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
They say it only takes a little faith
To move a mountain
Good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone
You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone
It is well with my soul
It is well, it is well with my soul
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