God is Good...
So in this one I am going to say some things that are hard for a mother to say about her child but necessary for me to paint the whole picture for you to really understand where we are at now vs then..
Very few of you know the private things that have been going on with Eowyn.. yes most or all of you know about her tumors and condition causing said tumors and all the chemo and everything that comes along with that and I have made a post here and there about her behavior but not really, really going into detail about it so here it is..
To start with, back in 2016 we were told that Eowyn had to have immediate brain surgery to relive fluid that had built up on her brain due to some low grade tumors mid-brain that had cut off the normal flow of fluid to her spine, so they went in and created another route for that to go and left what they call a Omia reservoir.. basically they removed a small pc of scull and left a hard bubble in it's place that has a straw attached to it so that if needed they can use this weird little device to "tap the bubble" and check the pressure in her brain and drain fluid with ease.
This only took about an hour to an hour in half, we went home a day later. By January we were putting a port in to start Chemo because of a brain stem glioma that is now causing pretty serious issues. This was a very long and hard thing we did. You name it and we went through it. A few hospital stays and weekly sometimes twice a week depending on what was going on so financially even tho there are two households it was rough.
Now to start this process they pretty much start every kid out on an anti-depressant, We went along with it not really knowing anything and trusting our doctors.. which we still do.. We pretty much seen this gradual dying of our child or at least the child we once knew. She went down hill, lost her hair, lost weight, lost her want to really do anything as chemo will do to pretty much anyone. We had to force her to eat or drink or do things even if she cried about it because we all refused to watch her waste away... if we went to do something she went too. Yes we let her rest more and take it easy but she went.
Finally we leveled out on the severity of the chemo treatments (so past induction) and we started to notice things just were not what they used to be. She openly did things to get into trouble, she was just down right mean to her siblings and nobody could do anything right. You had to watch her around new people because she would flip this switch and instantly be sick and depressed just to get attention or see how far she could push a new person or what she could get out of them. She was def depressed . The hospital has a toy closet and every chemo trip they let kids get something out of there as a reward for having to pump this poison into their veins... we had to put a stop to her getting anything out of this closet. In fact Short of when they would bring goody bags around or homemade blankets we no longer could let her get any sort of reward or even pick where to eat or even what she wanted to eat because if we did... It was a NIGHTMARE the rest of the day or the next few days.
Finally we get done with this type of chemo and we have a break.. things just get worse.
We started this oral chemo med.. it's a trial med so not as toxic as the iv stuff. and at this point we are now going to a separate building to see a child psychology physician because of her behavior. When I say we literally did not know what to do I mean it! She was constantly being destructive and any chance she got to hurt someone she did it.. I don't mean.. no, yeah I do mean physically as well.. she would get mad and attack one of the older kids.. she would write cruel notes to her step brother at her dads and she would do anything she could to get at Tessa and Jeremy... it was so bad.. But I was also a prime victim or target for her because with me she would keep me up all night.. literally.. all night... she would pull at me as her mom and play with my emotions.. ya'll this kid was down right vindictive..
We kept telling her doctor what was going on and all they would do is up a dose of this and add this and try this med and that med.. the level of meds was just out of hand but we did as we were instructed to do... The last time we went back in December I think.. we were honest to God ready to send her somewhere, anywhere that could help her better then we could. Her relationships at home were just gone.. none of the kids wanted anything to do with her at this point.. she had made them all cry or angry or hurt. Their solution was another med.. this time and anti psychotic... we hung our heads and went home to fill our rx....
This is where is gets good though so hold on...
We get home and find out we have no insurance.... Meds could not be filled. Thankfully we have a back stock of her pain med so that was not an issue.. I get on the phone the next day and try my best to get it lined out, I spend hours on the phone.. over a period of a month! We had to do what I do not recommend anyone do but we literally had no choice in the matter, She had to stop taking everything she was on except her pain med cold turkey, She detoxed... bad... It took that whole month at least for it to all clear out but....
With in the first two weeks this is what we got... After over a year of her faking emotion and mimicking what she was seeing.. We were sitting there with the kids and just talking and laughing and suddenly she starts to laugh... we all looked at each other and smiled and just listened.. she was laughing so hard she was holding her stomach.. None of us had realized how long it had been since she did that until that very moment.. Then one day her and Abby started fighting and of course everyone is still on defense with her and Abby snapped at her and she cried... It hurt her feelings.. let me say that again.. IT HURT HER FEELINGS!
Slowly she started to feel again, A lot of anger at first and we thought it was getting worse because she was actually getting angry this time, it was not fake, she was mad, she was sad and she noticed for the first time what she had done to everyone.. Now really we didn't know if she actually understood the gravity of her behavior and I still don't think she does... but she was starting to see what she was doing to everyone.
We still proceed with caution.. she still has some moments..
But you can talk to her.. you can laugh with her and you can hug her without it causing issues. Do you have any idea how devastating it is not to be able to love on your hurting child because it could cause a whole chain of events? that's where I was.. me specifically could not hug her or kiss her without it just making things sooo bad for everyone. We could not even say anything positive because she would take that and turn it around so fast it was crazy! Eowyn you did good on your paper today... next day... nothing but F's! Kid you not.
We had an appointment this last week with her doctor and he walked in and seen her playing.. yes playing with her baby brother and him laughing at her and it stopped him in his tracks.. he stood there in awe just watching.. we go to the room and she plops on the couch beside me and engages in conversation with him before going to the toys. He looked at me and asked what happened... So I told him.. God happened... I explained the insurance problem we happen to have just long enough for her to detox off all the meds.. and told him about having.. almost, our daughter back..
He was so excited, he was not even taking notes like he should have been, He said he was so worried about seeing us that day because if things had not improved his next step was to send her to a youth detox facility to reset her system. My 10 year old was going to be sent to a detox facility... let that sink in.. and we were OK with that!!
When I say this was a God thing that's what I mean... We never would have just taken her off all the meds.. never.. we would have had to lose precious time with her and send her away to be alone at some cold facility (I realize it may not be cold but in my mind i picture four walls and a padded room) to detox without her family.
Instead.. we get to hear her laugh! we get to see her smile a real smile.. we get to see her cry real tears and get an actual real attitude and get mad and all the stuff that normally irritates the crap out of parents we get to see now... She is still Eowyn and if you know her you know she is weird, she is a little dark and twisty and she can at times be annoying! But she is ours and I will never take that for granted again!
God is Good...
Very few of you know the private things that have been going on with Eowyn.. yes most or all of you know about her tumors and condition causing said tumors and all the chemo and everything that comes along with that and I have made a post here and there about her behavior but not really, really going into detail about it so here it is..
To start with, back in 2016 we were told that Eowyn had to have immediate brain surgery to relive fluid that had built up on her brain due to some low grade tumors mid-brain that had cut off the normal flow of fluid to her spine, so they went in and created another route for that to go and left what they call a Omia reservoir.. basically they removed a small pc of scull and left a hard bubble in it's place that has a straw attached to it so that if needed they can use this weird little device to "tap the bubble" and check the pressure in her brain and drain fluid with ease.
This only took about an hour to an hour in half, we went home a day later. By January we were putting a port in to start Chemo because of a brain stem glioma that is now causing pretty serious issues. This was a very long and hard thing we did. You name it and we went through it. A few hospital stays and weekly sometimes twice a week depending on what was going on so financially even tho there are two households it was rough.
Now to start this process they pretty much start every kid out on an anti-depressant, We went along with it not really knowing anything and trusting our doctors.. which we still do.. We pretty much seen this gradual dying of our child or at least the child we once knew. She went down hill, lost her hair, lost weight, lost her want to really do anything as chemo will do to pretty much anyone. We had to force her to eat or drink or do things even if she cried about it because we all refused to watch her waste away... if we went to do something she went too. Yes we let her rest more and take it easy but she went.
Finally we leveled out on the severity of the chemo treatments (so past induction) and we started to notice things just were not what they used to be. She openly did things to get into trouble, she was just down right mean to her siblings and nobody could do anything right. You had to watch her around new people because she would flip this switch and instantly be sick and depressed just to get attention or see how far she could push a new person or what she could get out of them. She was def depressed . The hospital has a toy closet and every chemo trip they let kids get something out of there as a reward for having to pump this poison into their veins... we had to put a stop to her getting anything out of this closet. In fact Short of when they would bring goody bags around or homemade blankets we no longer could let her get any sort of reward or even pick where to eat or even what she wanted to eat because if we did... It was a NIGHTMARE the rest of the day or the next few days.
Finally we get done with this type of chemo and we have a break.. things just get worse.
We started this oral chemo med.. it's a trial med so not as toxic as the iv stuff. and at this point we are now going to a separate building to see a child psychology physician because of her behavior. When I say we literally did not know what to do I mean it! She was constantly being destructive and any chance she got to hurt someone she did it.. I don't mean.. no, yeah I do mean physically as well.. she would get mad and attack one of the older kids.. she would write cruel notes to her step brother at her dads and she would do anything she could to get at Tessa and Jeremy... it was so bad.. But I was also a prime victim or target for her because with me she would keep me up all night.. literally.. all night... she would pull at me as her mom and play with my emotions.. ya'll this kid was down right vindictive..
We kept telling her doctor what was going on and all they would do is up a dose of this and add this and try this med and that med.. the level of meds was just out of hand but we did as we were instructed to do... The last time we went back in December I think.. we were honest to God ready to send her somewhere, anywhere that could help her better then we could. Her relationships at home were just gone.. none of the kids wanted anything to do with her at this point.. she had made them all cry or angry or hurt. Their solution was another med.. this time and anti psychotic... we hung our heads and went home to fill our rx....
This is where is gets good though so hold on...
We get home and find out we have no insurance.... Meds could not be filled. Thankfully we have a back stock of her pain med so that was not an issue.. I get on the phone the next day and try my best to get it lined out, I spend hours on the phone.. over a period of a month! We had to do what I do not recommend anyone do but we literally had no choice in the matter, She had to stop taking everything she was on except her pain med cold turkey, She detoxed... bad... It took that whole month at least for it to all clear out but....
With in the first two weeks this is what we got... After over a year of her faking emotion and mimicking what she was seeing.. We were sitting there with the kids and just talking and laughing and suddenly she starts to laugh... we all looked at each other and smiled and just listened.. she was laughing so hard she was holding her stomach.. None of us had realized how long it had been since she did that until that very moment.. Then one day her and Abby started fighting and of course everyone is still on defense with her and Abby snapped at her and she cried... It hurt her feelings.. let me say that again.. IT HURT HER FEELINGS!
Slowly she started to feel again, A lot of anger at first and we thought it was getting worse because she was actually getting angry this time, it was not fake, she was mad, she was sad and she noticed for the first time what she had done to everyone.. Now really we didn't know if she actually understood the gravity of her behavior and I still don't think she does... but she was starting to see what she was doing to everyone.
We still proceed with caution.. she still has some moments..
But you can talk to her.. you can laugh with her and you can hug her without it causing issues. Do you have any idea how devastating it is not to be able to love on your hurting child because it could cause a whole chain of events? that's where I was.. me specifically could not hug her or kiss her without it just making things sooo bad for everyone. We could not even say anything positive because she would take that and turn it around so fast it was crazy! Eowyn you did good on your paper today... next day... nothing but F's! Kid you not.
We had an appointment this last week with her doctor and he walked in and seen her playing.. yes playing with her baby brother and him laughing at her and it stopped him in his tracks.. he stood there in awe just watching.. we go to the room and she plops on the couch beside me and engages in conversation with him before going to the toys. He looked at me and asked what happened... So I told him.. God happened... I explained the insurance problem we happen to have just long enough for her to detox off all the meds.. and told him about having.. almost, our daughter back..
He was so excited, he was not even taking notes like he should have been, He said he was so worried about seeing us that day because if things had not improved his next step was to send her to a youth detox facility to reset her system. My 10 year old was going to be sent to a detox facility... let that sink in.. and we were OK with that!!
When I say this was a God thing that's what I mean... We never would have just taken her off all the meds.. never.. we would have had to lose precious time with her and send her away to be alone at some cold facility (I realize it may not be cold but in my mind i picture four walls and a padded room) to detox without her family.
Instead.. we get to hear her laugh! we get to see her smile a real smile.. we get to see her cry real tears and get an actual real attitude and get mad and all the stuff that normally irritates the crap out of parents we get to see now... She is still Eowyn and if you know her you know she is weird, she is a little dark and twisty and she can at times be annoying! But she is ours and I will never take that for granted again!
God is Good...
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