How Do I Cope?

The way I cope is pretty simple. I look for the good and I never give up hope.

I am so relieved that Boy#1 does not have other neurological issues. The psychiatric disease is enough. That was a horrible couple of days. Added neurological disease might make everything unmanageable.

We now have to figure out why he is so sick. But, I am grateful for the hospital where he is being treated.

We are lucky.

Inner Sanctum

Boy#1 is very sick. 

But, this is not about him. This is about me. I was really sick, my other two kids were really sick, and I had my IVig. So, last week was awful. Then, Boy#1 starts to get sick. After three days of viral type illness, he fell asleep. And, he did not wake up. I mean, yes, I could rouse him. Then, back to sleep. Can you imagine the state of panic this put me into? The first day, I just tried to get him to drink. Hovering. Constantly. The next day, I knew it was bad. His mouth and lips were bleeding, his teeth were covered in blood, and he had diarrhea and vomiting. Of course, it was a Saturday. By that night, I was in full blown panic mode and took him to the ER. They basically diagnosed him with the flu and gave fluids and sent us home. I tried to express my FEAR that he was in some funky coma. They just assured me it was normal to sleep when you're sick. No shit, right?

One day passes. I still cannot wake him to drink. He is not getting up for the bathroom, even. I am entering full blown spaz mode. I take him to his pediatrician first, he sends us back to that ER. They are concerned, but want him to get home for Christmas. I explain that I cannot take care of him at home and he still is not awake. It is normal to sleep when you're sick. 

He slept through Christmas. I am still hovering. Begging. Cajoling. 

I took him to the big hospital down town the next day. They took me seriously! Fluids, tests, so on and so forth. They decided he needed a lumbar puncture. (I agree, he did) They decided to do it right there in the ER. I said if he wakes up, all Hell will break loose. Eh. Nobody listens. So, he had enough fluid in him to give him just enough spark to be combative. Two nurses were holding him and they asked me to hold his head. He was crying, screaming, yelling, thrashing... These two doctors are just going for it. Cleaning his back, getting out these gigantic needles, asking us to keep him still, and basically just behaving as if they have no sense at all. So, the one nurse just screams, "I will have no part of this! You are endangering his life!" (and my glasses, because he's totally going to slam his head into my face) Party over. They admitted him.

Next day was bad. Running all over the hospital doing tests. Finally, we piece together that he screams every time you touch his stomach. Okay! CT scan of his stomach! Only, he has to have 24ozs of contrast fluid. Um, yeah. He won't open his mouth or eyes. So, a little sedative, a lot of nurses, and a feeding tube down his nose. And, me holding his hands down for an hour while it runs through the tube. 

I was completely broken down at this point. Every one has a breaking point. Right? 

The neurologist comes in and says that his brain activity is slowed down to an almost unconscious point. And says that maybe the Clozaril is causing this. Intoxication. My hair is crazed, I look like a loon, and I sort of scream that he has only been like this for 5 days! The neurologist said I had to go home and rest because I was going to have a breakdown. Um, yeah.

At least he is not having seizures.

Tube comes out and we wait for transport to CT scan. The worst 15 minutes of my life followed. Boy#1 lurches out of bed. An unbelievable liquid accident happens. The contrast fluid comes out - all of it. Everywhere. He gets to the bathroom. He slips and hits his head. I slip and land on top of him in the bathtub. I start crying. He will not stop turning the water on and practically drowns himself. Doctors rush in - one asked, "Is this his baseline behavior?" OF COURSE IT ISN'T! The Hazmat team arrives and cleans the room. We go for a CT scan. I am sobbing hysterically the entire time. Then, babbling incoherently about too many cats at home and how could being a mother hurt this much. Finally, I go home.

For Serious.

I Wish You Godspeed, Nancy Lanza.

This last week has been a terrible week for everyone. 

I felt tremendously sad - especially sad that the media showed little restraint with reporting and that everything instantly became political. 

Then, I am Adam Lanza's Mother went viral. It made me really angry. I shut every thing down, turned every thing off, and just stewed. Why did it make me so angry? I guess the answer is the tone of the blog. So much anger and resentment. As if MI kids need more anger and resentment! It might bring awareness, but not the kind I personally think there needs to be. Can't something reasonable go viral?

Mental Illnesses have similarities. I think every parent who has a child with mental illness knows this. So, I will not spend time comparing any of my sons to Adam Lanza.

What I will talk about, what resonates so deeply within me, is Nancy Lanza's story. Her story is MY story.

The bleak isolation. I often have to piece myself together to get out and do things. Yet, still, I am set apart. Worlds apart if I have my children with me. Over time, trying to weather the storm that is childhood mental illness, a toll is taken on all those around. People might say, "Take care of YOU first!". Yeah, right. *followed by a hysterical laugh* It doesn't happen that way. Mentally, I do okay. Physically, I am a mess! I have progressive multiple sclerosis, diabetes, and I just get sick easily. I am just worn out. 5 days out of the week, I go to bed thinking, "How will I get up tomorrow? My body is just going to give.". So far, I keep getting up. Sheer force of will.

There are reports that she fought with the school system and tried home schooling. Boy, can I ever relate to that! I tried everything. Finally, we pay out of pocket for private school and have no extra money. Oh, well. I know I am lucky to be able to do that!  To see your child systemically rejected by their peers is really hard. To see them rejected by educators and the system is heart breaking. Those people are supposed to help. Not add more harm. 

She was divorced and handled everything regarding care for her son. I am not divorced. Marriage is hard, leave it at that. But, I do make all of the decisions regarding care. It is absolutely exhausting. Plus, when things go wrong, who's to blame? Well. The Mother.

Which brings me to the thing that makes me saddest of all. Our actions right now are blaming the mother. There was no bell chimed for the mother. Poor Nancy Lanza is not included in any of the memorials. How wretched. Horrible. Awful. I mourn your loss, Nancy Lanza. Part of my heart belongs to you, Nancy. Because we are the same kind of mothers.

I Wish You Godspeed, Nancy Lanza

This last week has been a terrible week for everyone. 

I felt tremendously sad - especially sad that the media showed little restraint with reporting and that everything instantly became political. 

Then, I am Adam Lanza's Mother went viral. It made me really angry. I shut every thing down, turned every thing off, and just stewed. Why did it make me so angry? I guess the answer is the tone of the blog. So much anger and resentment. As if MI kids need more anger and resentment! It might bring awareness, but not the kind I personally think there needs to be. Can't something reasonable go viral?

Mental Illnesses have similarities. I think every parent who has a child with mental illness knows this. So, I will not spend time comparing any of my sons to Adam Lanza.

What I will talk about, what resonates so deeply within me, is Nancy Lanza's story. Her story is MY story.

The bleak isolation. I often have to piece myself together to get out and do things. Yet, still, I am set apart. Worlds apart if I have my children with me. Over time, trying to weather the storm that is childhood mental illness, a toll is taken on all those around. People might say, "Take care of YOU first!". Yeah, right. *followed by a hysterical laugh* It doesn't happen that way. Mentally, I do okay. Physically, I am a mess! I have progressive multiple sclerosis, diabetes, and I just get sick easily. I am just worn out. 5 days out of the week, I go to bed thinking, "How will I get up tomorrow? My body is just going to give.". So far, I keep getting up. Sheer force of will.

There are reports that she fought with the school system and tried home schooling. Boy, can I ever relate to that! I tried everything. Finally, we pay out of pocket for private school and have no extra money. Oh, well. I know I am lucky to be able to do that!  To see your child systemically rejected by their peers is really hard. To see them rejected by educators and the system is heart breaking. Those people are supposed to help. Not add more harm. 

She was divorced and handled everything regarding care for her son. I am not divorced. Marriage is hard, leave it at that. But, I do make all of the decisions regarding care. It is absolutely exhausting. Plus, when things go wrong, who's to blame? Well. The Mother.

Which brings me to the thing that makes me saddest of all. Our actions right now are blaming the mother. There was no bell chimed for the mother. Poor Nancy Lanza is not included in any of the memorials. How wretched. Horrible. Awful. I mourn your loss, Nancy Lanza. Part of my heart belongs to you, Nancy. Because we are the same kind of mothers.