Yesterday was very tough. The nurse called 911 because TJ was showing different seizure activity. I actually cried when the first responders (FD) showed up. I was scared because TJ just wasn't right. We spent the day at the hospital. Mom and Dad took TJ home with them.
I came home and had planned on going for a walk with Charlie (who had been locked up in his crate once 911 was called). I had planned on then going to bed. It didn't happen. I needed more. I needed to feel comforted. I needed to not feel. So I ordered in food and ate and ate.
That means today, I get to start filling in a behaviour chain. It is not supposed to be a punishment. It is to be a learning tool. To learn why I made the decission that I did, and how to make it easier not to make the same decision next time. So, now I am learning why I needed to eat so much to make me feel better.
I know why. I wanted comfort. I wanted to feel over full instead of sad and guilty and scared and out of control over the entire hospital visit. I wanted to escape from feeling for a while. So, that is what I did.
As to how not to do it again next time, I have no idea right now. I am not doing it tonight, and I really want to. I want to order in KFC and just binge on all that fat and hot stuff for the night.
Showing posts with label AHC. Show all posts
Showing posts with label AHC. Show all posts
Sunday, March 06, 2011
Thursday, August 19, 2010
On the day and on time
Today was not such a good day. So many things were happening. Most were just in my head. Doesn't matter, it was still too much.
TJ was full blown most of today. That is stressful enough. Add in his shallow breathing, and his not having any "grownup" doctors and not knowing what hospital they would take him to, if I had to call 911. Add not having guardianship. Add dishes filling my sink. Add financial stuff. All equals an overwhelmed me.
I called my Mom for help, when I was at my worst. Problem is, I haven't gotten much better. I didn't do any of the yucky behaviour. I even turned away food (food I shouldn't have). Even now, I am feeling like nothing is going right. Just feel like everything, and I mean everything, is on my shoulders.
Right now I am sitting here, crying for no reason. Crying because...hell, I don't even know why. Just plain crying. I guess it is a buildup of emotions that I have no control over. Maybe I shouldn't have any control over them. Maybe I should just let them out. Maybe that will help.
Doesn't matter now. Time to go to bed.
TJ was full blown most of today. That is stressful enough. Add in his shallow breathing, and his not having any "grownup" doctors and not knowing what hospital they would take him to, if I had to call 911. Add not having guardianship. Add dishes filling my sink. Add financial stuff. All equals an overwhelmed me.
I called my Mom for help, when I was at my worst. Problem is, I haven't gotten much better. I didn't do any of the yucky behaviour. I even turned away food (food I shouldn't have). Even now, I am feeling like nothing is going right. Just feel like everything, and I mean everything, is on my shoulders.
Right now I am sitting here, crying for no reason. Crying because...hell, I don't even know why. Just plain crying. I guess it is a buildup of emotions that I have no control over. Maybe I shouldn't have any control over them. Maybe I should just let them out. Maybe that will help.
Doesn't matter now. Time to go to bed.
Wednesday, August 19, 2009
Summer is almost finished. Plus some introspection.
With summer vacation coming to an end, i have to say that i finally got the MIT and Dad camping. Finally. We went from the 6-8 and had a great, quiet time. Well other than the Raccoons hunting and gathering from our site. LOL. i have already booked our weekend in September. It did help throw in my face how much the MIT has lost in a year. He couldn't get up to go to the "pee tree" by Himself. One of us had to have at least 2 hands on Him at all times, and that was with Him having both sides working. He nearly fell into the fire 6 times.
i can't wait for school to start. At least then i will be getting some sleep during the days. Until then, it is up all night and sleep when i get the chance. Tomorrow Sis is taking the MIT to a movie. i can sleep then.
So the therapist and i started the "borderline personality disorder" questionnaire, and wouldn't you know it, i might be bi-polar LOL. i get to ask friends and family if they have ever seen my "manic" and how i acted, and how i was, and if they have ever seen the large depression afterwards. Great, feedback i really don't want to hear about.
On the BDSM side of me. Still nothing. No desire for it. No desire to put myself out there. i know that side is still in me. When ever P comes for a visit i can drop right back into that mindset. i just try really hard not to. It makes me feel too alone afterwards, even after just asking for a smoke, or asking Him if He wants something to drink. The loneliness afterwards is so hard.
i know that if i ever did get involved like that with someone, it would have to be with someone just for me. At least for a little while. Just so i can get my bearings back again, and not have to go home feeling so alone again.
i am actually missing L a lot. i had felt such a connection with Her. i know She is going through a lot, and Her life isn't easy right now. i wish i could be a help to Her. i just don't know if She will ever be able to accept me for who i am, and if She will ever want me back in Her life. She did say some things that really hurt me. i know me though. i know i can forgive and forget. i just don't know if She can, or if She wants to. i still feel that connection to Her, even without speaking to Her in almost a year. i am just not going to make the first move on this. Not this time. i have gone back to Her too many times with my tail between my legs.
i can't wait for school to start. At least then i will be getting some sleep during the days. Until then, it is up all night and sleep when i get the chance. Tomorrow Sis is taking the MIT to a movie. i can sleep then.
So the therapist and i started the "borderline personality disorder" questionnaire, and wouldn't you know it, i might be bi-polar LOL. i get to ask friends and family if they have ever seen my "manic" and how i acted, and how i was, and if they have ever seen the large depression afterwards. Great, feedback i really don't want to hear about.
On the BDSM side of me. Still nothing. No desire for it. No desire to put myself out there. i know that side is still in me. When ever P comes for a visit i can drop right back into that mindset. i just try really hard not to. It makes me feel too alone afterwards, even after just asking for a smoke, or asking Him if He wants something to drink. The loneliness afterwards is so hard.
i know that if i ever did get involved like that with someone, it would have to be with someone just for me. At least for a little while. Just so i can get my bearings back again, and not have to go home feeling so alone again.
i am actually missing L a lot. i had felt such a connection with Her. i know She is going through a lot, and Her life isn't easy right now. i wish i could be a help to Her. i just don't know if She will ever be able to accept me for who i am, and if She will ever want me back in Her life. She did say some things that really hurt me. i know me though. i know i can forgive and forget. i just don't know if She can, or if She wants to. i still feel that connection to Her, even without speaking to Her in almost a year. i am just not going to make the first move on this. Not this time. i have gone back to Her too many times with my tail between my legs.
Friday, December 26, 2008
Finally over
i am happy to report that yesterday is over. i survived. i am still in the same mood as i was before it all started. Depressed. Wanting to hide. Tired. The doctor had increased one of my drugs, and it seems to be helping. Well, helping the panic attacks. It makes me more tired, and just more of the not caring. At least i was calm.
Eve - The MIT went to church with my Mom and Dad. He chose to dress up. He wore the red dress shirt that L&D had given Him last year. He chose to wear black pants (not green) and he chose to wear a Christmas tie. Once He left, i had to force myself into wrapping gifts. i just couldn't find it in me to actually want to do it. i had to do it. i needed to get it done. So i did. grudgingly. i put on a happy face, setting up the cookies, eggnog, and carrots for Santa's visit. (yes my 16 year old still believes. i am a lucky Mom). After the MIT went to bed, i actually wrapped and set-up under the tree, and hung the stockings with care. i finally made it to bed about 2am
Day - i do didn't want to do this. i put off the MIT about opening gifts. He had woken at 4, and i kept Him from hitting the living room until 6:00. We opened gifts together. i took pictures. He took pictures. He totally enjoyed the fact that Santa stole a hedgehog from me. He loved the fact that we found a carrot outside partially eaten. It was a good time. Santa out shone me on one gift. It was fun playing that up. The MIT left for church, dressed in His regular red and green. i was supposed to wrap 2 family gifts. i was supposed to start on the turkey. i had no aluminum wrap. No starting the turkey for me. i went back to sleep. i got a call from my Mom telling me to get up, and get moving on preparing the turkey and having a shower. Eventually i did just that. They all showed up at noon. Food, aluminum wrap, and presents all in toe. i wrapped up the turkey and put it in the oven, hoping 4 hours was good enough.
It was present time. i had Sis wrap Mom's gift, and also her own, since i just couldn't bring myself to do it. i got stuff. Sis got stuff. Dad got stuff. Mom got stuff. Nana and Auntie showed up, and more gifts were exchanged. Mom eventually sent me to bed once Nana, Auntie and Sis had to leave. i got to sleep for an hour. When i got up, the turkey was done. It literally fell apart when i moved it from the roasting pan to the plate. Wings, legs, and 1/2 the carcass fell off. i guess i did really good. From that point, Mom and Dad took over the dinner, and i got to just lie in front of the TV and relax. Overall, it was a good day. i survived. i made it. i lived through it. All good, i guess.
Boxing day - Today the MIT is already watching 2 new DVD's. i am sitting here typing on the computer with the NCIS marathon is on in the background. i get to go out with my Mom shopping, while the MIT and Dad get to spend quiet time together. i have adivan packed to deal with humans and Mom's driving. This is not going to be fun.
E just called. P is in the hospital. They don't know what is wrong with Him. He is out of emergency, and now in a room. K&B are here to help, and also because K is P's next of kin. An ultra sound is scheduled. That is a wait and see issue. E is going to call me later, to either talk, or as me to help out. i am on standby, and am happy with it. i help where i can, and do what i can, when she and He need me. i may be taking care of the kids. i may be driving E to the hospital to visit P. i may even be driving B back to TO. i am prepared to do whatever is needed.
i will also be spending as much time with D as i can. Without P, E can't get there. i will be taking that responsibility over. Not a problem for me. i can handle it. i will just be leaving the MIT home when i go over. i can't have Him going full blown at the hospice again.
So that is my recap. That is my plan, of sorts. That is how my life, which is intertwined with my friends' lives, will be going for the next little while. At least i have a purpose for now. Purpose keeps me here. Purpose and responsibility are the only things keeping me here.
Eve - The MIT went to church with my Mom and Dad. He chose to dress up. He wore the red dress shirt that L&D had given Him last year. He chose to wear black pants (not green) and he chose to wear a Christmas tie. Once He left, i had to force myself into wrapping gifts. i just couldn't find it in me to actually want to do it. i had to do it. i needed to get it done. So i did. grudgingly. i put on a happy face, setting up the cookies, eggnog, and carrots for Santa's visit. (yes my 16 year old still believes. i am a lucky Mom). After the MIT went to bed, i actually wrapped and set-up under the tree, and hung the stockings with care. i finally made it to bed about 2am
Day - i do didn't want to do this. i put off the MIT about opening gifts. He had woken at 4, and i kept Him from hitting the living room until 6:00. We opened gifts together. i took pictures. He took pictures. He totally enjoyed the fact that Santa stole a hedgehog from me. He loved the fact that we found a carrot outside partially eaten. It was a good time. Santa out shone me on one gift. It was fun playing that up. The MIT left for church, dressed in His regular red and green. i was supposed to wrap 2 family gifts. i was supposed to start on the turkey. i had no aluminum wrap. No starting the turkey for me. i went back to sleep. i got a call from my Mom telling me to get up, and get moving on preparing the turkey and having a shower. Eventually i did just that. They all showed up at noon. Food, aluminum wrap, and presents all in toe. i wrapped up the turkey and put it in the oven, hoping 4 hours was good enough.
It was present time. i had Sis wrap Mom's gift, and also her own, since i just couldn't bring myself to do it. i got stuff. Sis got stuff. Dad got stuff. Mom got stuff. Nana and Auntie showed up, and more gifts were exchanged. Mom eventually sent me to bed once Nana, Auntie and Sis had to leave. i got to sleep for an hour. When i got up, the turkey was done. It literally fell apart when i moved it from the roasting pan to the plate. Wings, legs, and 1/2 the carcass fell off. i guess i did really good. From that point, Mom and Dad took over the dinner, and i got to just lie in front of the TV and relax. Overall, it was a good day. i survived. i made it. i lived through it. All good, i guess.
Boxing day - Today the MIT is already watching 2 new DVD's. i am sitting here typing on the computer with the NCIS marathon is on in the background. i get to go out with my Mom shopping, while the MIT and Dad get to spend quiet time together. i have adivan packed to deal with humans and Mom's driving. This is not going to be fun.
E just called. P is in the hospital. They don't know what is wrong with Him. He is out of emergency, and now in a room. K&B are here to help, and also because K is P's next of kin. An ultra sound is scheduled. That is a wait and see issue. E is going to call me later, to either talk, or as me to help out. i am on standby, and am happy with it. i help where i can, and do what i can, when she and He need me. i may be taking care of the kids. i may be driving E to the hospital to visit P. i may even be driving B back to TO. i am prepared to do whatever is needed.
i will also be spending as much time with D as i can. Without P, E can't get there. i will be taking that responsibility over. Not a problem for me. i can handle it. i will just be leaving the MIT home when i go over. i can't have Him going full blown at the hospice again.
So that is my recap. That is my plan, of sorts. That is how my life, which is intertwined with my friends' lives, will be going for the next little while. At least i have a purpose for now. Purpose keeps me here. Purpose and responsibility are the only things keeping me here.
Wednesday, December 24, 2008
Let's get it over with already!
It is the early morning of Christmas Eve. i am up and begrudging it. i really don't want to celebrate this year. i am not feeling it. All i am feeling is anxiety, tired, stress, depressed. i just want to curl up under the covers and hide. Yesterday was hell. i couldn't catch a break. i have found that if a wrench is thrown into my plans, i just can't handle it.
Here was the plan. First, i had to head out and go get my Sis some money to take the MIT to get his hair done. Then off to the doctor. After the doctor, i was going to head off the Walmart, then Fortinos, then Day/Night pharmacy. Home to get the newly blond MIT, wrap some gifts, and get a shower. Off to see D at the hospice, then to E&P's to drop off gifts. Head home again, and actually relax until it was time for my Mom to get the MIT for karate. Get some of His gifts wrapped, call M, La and baby girl and invite them over for either Christmas eve or Saturday. Tidy-up for when the nurse and MIT get here. Head off and get smokes. That was the plan. Here is what really happened.
i am up and ready to go. It is time to get moving. First stop, bank machine for my Sis. i get out and into the van, and it wouldn't start. i had to call CAA and get a jump. The estimated time of CAA coming was an hour. i had to be at the doctor's office for 9:30 (i thought). Let the panic attack begin. i needed that appointment. After making a bunch of calls, and still waiting for CAA, i realized my appointment was changed to 10. OK, i could breath. As long as CAA actually showed up before 9:45. Another save. CAA arrived just after 9. Ok, time to breath again. Van got a jump, and off i went to get my Sis money. Then off to the doctor.
When you are stressed, and having a panic attack (or trying not to have a panic attack), drivers that hug your bumper, drivers that can't make up their minds about where they are going, and drivers that like to go over the yellow line when turning, drive you nuts. Stress increasing. Nerves on edge. i was f**ked. i got to the doctor's office and was a mess. i couldn't sit still. i kept digging my nails into my bicep. i broke down and cried. The doctor just looked at me and listened to me and watched me fall to pieces. She even suggested she admit me to get my meds and emotions under control. Nope, i have to much to do over the next few days. So, i left the doctor's office, script for meds in hand, and headed off to my next stop.
Walmart on the day before the day before Christmas. What the hell was i thinking. i couldn't do it. i got one look at the parking lot, and tried to figure out how many people would be in there and just couldn't do it. Panic attack activate!!! (private joke) i didn't even stop. i drove out of the parking lot, and headed to the drug store. i knew i had to get my meds. i went to the pharmacy, and found a parking spot. i saw my Sis's car. Good, they were still busy. Dropped off my script and headed to the hair place.
Different people do hair different ways. L used to do the MIT's hair. That won't work now, so Sis took the MIT to Haircrafters. Yeah, no where close to the treatment He got from L. He was not a happy boy. Sis talked me down a bit, and i was able to get some stuff at the pharmacy from my "still to get" list, along with my pop, and some stocking stuffers. Took all that to the van, and then went back to get my meds. Headed home and waited for the MIT to return.
In my head, i wasn't done. i still wanted to get the rest of my list finished. i wanted (and felt like i needed) to go and visit D with the MIT, and then P&E's. So, once He arrived, that is what we planned to do. We wrapped gifts, and got out the house. Got to D's and spent only a few minutes with her, when the MIT lost His right side. We started to leave (didn't want to get stranded with the MIT going full blown at the hospice). We got to a set of chairs just before the kitchen, and had to stop. The MIT went full blown. We sat there. Waited. A Santa walked by. People looked and said "hello" to the MIT and me. One nurse asked if He was ok. Gave the "yes, this is normal for Him" response. Waited. i ended up calling my Dad to come and bring us the MIT's wheelchair so we could make it home before 4. The MIT didn't get any movement back until after 6. That blew the entire day away. By the time the nurse showed up, i was in no shape to head off for smokes. i just couldn't do it.
Yesterday was hell in my head. Today i feel like a failure. i feel even more stress because i have more piled on me today. my list of "To Do" has grown since i couldn't get done, what i wanted to yesterday. It is raining. i hate the rain. i would rather have snow. i want to just cancel everything. No family. No presents. No expectations. No stress. No full blown. No anxiety. i just want it all to be over.
But it can't be. Not yet. Today i have to (in no particular order) gift wrap, go to Walmart, get smokes, do dishes, clean the house, make cookies for Santa, send the MIT off with my Sis, find eggnog for Santa, vacuum, get gifts and cookies to P&E's, do laundry, shovel, and smile while i do it.
i am so ready to get this over with.
Here was the plan. First, i had to head out and go get my Sis some money to take the MIT to get his hair done. Then off to the doctor. After the doctor, i was going to head off the Walmart, then Fortinos, then Day/Night pharmacy. Home to get the newly blond MIT, wrap some gifts, and get a shower. Off to see D at the hospice, then to E&P's to drop off gifts. Head home again, and actually relax until it was time for my Mom to get the MIT for karate. Get some of His gifts wrapped, call M, La and baby girl and invite them over for either Christmas eve or Saturday. Tidy-up for when the nurse and MIT get here. Head off and get smokes. That was the plan. Here is what really happened.
i am up and ready to go. It is time to get moving. First stop, bank machine for my Sis. i get out and into the van, and it wouldn't start. i had to call CAA and get a jump. The estimated time of CAA coming was an hour. i had to be at the doctor's office for 9:30 (i thought). Let the panic attack begin. i needed that appointment. After making a bunch of calls, and still waiting for CAA, i realized my appointment was changed to 10. OK, i could breath. As long as CAA actually showed up before 9:45. Another save. CAA arrived just after 9. Ok, time to breath again. Van got a jump, and off i went to get my Sis money. Then off to the doctor.
When you are stressed, and having a panic attack (or trying not to have a panic attack), drivers that hug your bumper, drivers that can't make up their minds about where they are going, and drivers that like to go over the yellow line when turning, drive you nuts. Stress increasing. Nerves on edge. i was f**ked. i got to the doctor's office and was a mess. i couldn't sit still. i kept digging my nails into my bicep. i broke down and cried. The doctor just looked at me and listened to me and watched me fall to pieces. She even suggested she admit me to get my meds and emotions under control. Nope, i have to much to do over the next few days. So, i left the doctor's office, script for meds in hand, and headed off to my next stop.
Walmart on the day before the day before Christmas. What the hell was i thinking. i couldn't do it. i got one look at the parking lot, and tried to figure out how many people would be in there and just couldn't do it. Panic attack activate!!! (private joke) i didn't even stop. i drove out of the parking lot, and headed to the drug store. i knew i had to get my meds. i went to the pharmacy, and found a parking spot. i saw my Sis's car. Good, they were still busy. Dropped off my script and headed to the hair place.
Different people do hair different ways. L used to do the MIT's hair. That won't work now, so Sis took the MIT to Haircrafters. Yeah, no where close to the treatment He got from L. He was not a happy boy. Sis talked me down a bit, and i was able to get some stuff at the pharmacy from my "still to get" list, along with my pop, and some stocking stuffers. Took all that to the van, and then went back to get my meds. Headed home and waited for the MIT to return.
In my head, i wasn't done. i still wanted to get the rest of my list finished. i wanted (and felt like i needed) to go and visit D with the MIT, and then P&E's. So, once He arrived, that is what we planned to do. We wrapped gifts, and got out the house. Got to D's and spent only a few minutes with her, when the MIT lost His right side. We started to leave (didn't want to get stranded with the MIT going full blown at the hospice). We got to a set of chairs just before the kitchen, and had to stop. The MIT went full blown. We sat there. Waited. A Santa walked by. People looked and said "hello" to the MIT and me. One nurse asked if He was ok. Gave the "yes, this is normal for Him" response. Waited. i ended up calling my Dad to come and bring us the MIT's wheelchair so we could make it home before 4. The MIT didn't get any movement back until after 6. That blew the entire day away. By the time the nurse showed up, i was in no shape to head off for smokes. i just couldn't do it.
Yesterday was hell in my head. Today i feel like a failure. i feel even more stress because i have more piled on me today. my list of "To Do" has grown since i couldn't get done, what i wanted to yesterday. It is raining. i hate the rain. i would rather have snow. i want to just cancel everything. No family. No presents. No expectations. No stress. No full blown. No anxiety. i just want it all to be over.
But it can't be. Not yet. Today i have to (in no particular order) gift wrap, go to Walmart, get smokes, do dishes, clean the house, make cookies for Santa, send the MIT off with my Sis, find eggnog for Santa, vacuum, get gifts and cookies to P&E's, do laundry, shovel, and smile while i do it.
i am so ready to get this over with.
Saturday, November 08, 2008
A Week from today
the MIT, my Dad and i will be camping. We will be out in the "wild", hiding out in a tent. It is currently 3C outside. Yes, we will be camping in a tent. Yes we will have the heater with us. Yes i will be packing enough blankets to supply an entire family of 7. Yes we will be having fun.
Things have been weird around here. The MIT has been getting angry at a lot of different things. He even got in trouble at school over it. He has been having more and more episodes with no muscles. He has been having more and more absent seizures. He did do something new. He lied to me. Straight faced, full lied. i am so proud. It is a stage He has missed up until now. He actually did it twice. i kept my wits about me. i didn't fall for the lies. He did learn that i wouldn't put up with lying. We will be going to the seating clinic this week. He desperately needs a new wheelchair. Heck, he is using it more and more, it should at least fit His butt.
i have been spending some time with D. E asked if D was getting any worse, in my eyes. i did tell her what i truly thought. E looked like she needed to hear my truthful observations. i hope i didn't hurt her with them. i did say that D was declining physically, but cognitively, she was still there. Yes it would take her a while to get to where her thoughts really were, but she still got there. D and i have secret plans. It will take a couple weeks to fulfill them, but we will do it. It is kind of my present to her and to E. i wish i could help E more. i know i can't. She is in a yucky space. A space where people are invading her living space and her safe place. A space where her mind and emotions need to hide. A space where she is watching someone she loves decline before her eyes. She is hitting the guilt phase. The feeling like she isn't strong enough to handle what she is going through. The feeling of being tired all the time. The feeling that she doesn't have her grown-up support there for her. i know those feelings. i just can't fix them for her. She needs to feel them and she will. Slowly. There is no way to prepare for what is to come.
On my front, the lump is bigger. You can now see it if i take my shirt off. i can feel it when i brush crumbs off my shirt. i did call the doctor about it, and she is going to look at it again when i see her at my normal appointment on Thursday. It is probably a cyst, just not one that they could read right on the mammogram or ultrasound. i am going to ask for either a biopsy or a fluid needle test. i need to know what this is, or what this isn't so i can just keep going forward with life. i need to know if this is going to be something else to beat. i just need to know.
Things have been weird around here. The MIT has been getting angry at a lot of different things. He even got in trouble at school over it. He has been having more and more episodes with no muscles. He has been having more and more absent seizures. He did do something new. He lied to me. Straight faced, full lied. i am so proud. It is a stage He has missed up until now. He actually did it twice. i kept my wits about me. i didn't fall for the lies. He did learn that i wouldn't put up with lying. We will be going to the seating clinic this week. He desperately needs a new wheelchair. Heck, he is using it more and more, it should at least fit His butt.
i have been spending some time with D. E asked if D was getting any worse, in my eyes. i did tell her what i truly thought. E looked like she needed to hear my truthful observations. i hope i didn't hurt her with them. i did say that D was declining physically, but cognitively, she was still there. Yes it would take her a while to get to where her thoughts really were, but she still got there. D and i have secret plans. It will take a couple weeks to fulfill them, but we will do it. It is kind of my present to her and to E. i wish i could help E more. i know i can't. She is in a yucky space. A space where people are invading her living space and her safe place. A space where her mind and emotions need to hide. A space where she is watching someone she loves decline before her eyes. She is hitting the guilt phase. The feeling like she isn't strong enough to handle what she is going through. The feeling of being tired all the time. The feeling that she doesn't have her grown-up support there for her. i know those feelings. i just can't fix them for her. She needs to feel them and she will. Slowly. There is no way to prepare for what is to come.
On my front, the lump is bigger. You can now see it if i take my shirt off. i can feel it when i brush crumbs off my shirt. i did call the doctor about it, and she is going to look at it again when i see her at my normal appointment on Thursday. It is probably a cyst, just not one that they could read right on the mammogram or ultrasound. i am going to ask for either a biopsy or a fluid needle test. i need to know what this is, or what this isn't so i can just keep going forward with life. i need to know if this is going to be something else to beat. i just need to know.
Thursday, October 30, 2008
Waiting....
i am sitting here watching the clock. i have an appointment in 2 hours with the doctor to discuss the results of my mammogram and ultrasound. 2 hours to wait and worry. 2 hours to get a shower, get dressed, and then leave for the doctor's to hear if everything is normal, i have a cyst, calcium deposit, or growth that needs to be biopsied. 2 hours. Not enough time to hide under the covers. Not enough energy to go and get groceries. Too much time to think and think and think.
Think about the what ifs. Think about how i feel. Think about how i will react. Think about what will happen next. Think about how the MIT will feel. Think about how my parents will feel. Think about how my friends will feel.
i also lost 2 friends this past week. Not because of death, but because of how i handled my fear. They got mad about how i reacted to the fear i was feeling. They got mad about how others were being made to feel, without talking to them. They decided things about me. i have decided things about them. i have decided that they have rules that they expect others to live by, but not live that way themselves. i have decided i don't need to work so hard to keep friends. Those that truly care about me, and are friends of mine, understand me, and let me live how i please, knowing that i don't break their confidences, or purposely act to hurt them. Those that truly are my friends, know me, help me, and are there for me, just as i know them, help them, and are there for them. i am sad i am loosing people i thought cared for me so much, but am less stressed, knowing i don't have to live up to expectations they don't even hold up themselves.
What saddens me most about the situation is the MIT. He is mad. He misses them. He misses A. He says that they acted like Him. Mad about something and not able to let it go or talk about it. He talked about how they "lied" about forgiving me before. He talked about how He did that with Mr. B. at karate. He understands that they don't hate Him, and aren't mad at Him, but He knows the friendship has changed, and it does affect how often they will and how willing they will be to see Him, with them being mad at me. i like how "grown-up" He is getting.
He knows what is happening with me. He knows about the appointment and we have talked about what we are hoping the doctor will say. He is scared i will die, like others in my Mom's family, or like others from His church. He is scared how things will change if it isn't nothing or isn't a cyst.
i made Him come with me to see D and E and P. He likes that D is like Him. He likes that someone else He knows forgets words, slurs, or is shaky. He feels like He isn't alone so much in what He experiences. He understands how serious D's condition is, but He feels connected to her. He says D will be waiting to greet Him when He dies, along with Papa. He thinks D and Papa will be friends in heaven. He likes that idea. He liked that everyone was bald. He doesn't want me to go bald.
The MIT is having more seizures. He seized at school yesterday. He fell 5 times in a 1 1/2 hour period on Tuesday. He forgets more and more words. This morning He was so pale when He woke up. His condition is getting more and more unstable. Both with the way His balance is, and with His health. More seizures is a bad thing. More falling is a bad thing. i keep looking forward and i see Him spending more and more and more time in His wheelchair. He already is. He doesn't spend an entire day out of it, or without loosing muscle tone. Sure we don't use it much here at home, but even here He spends more and more time without a side working. It is a daily norm now.
Wow, i have now spent an entire 1/2 hour writing. That means only 1 hour before i leave to see the doctor. That means i have 1 1/2 hours before i see the doctor. That means 1 1/2 hours before i find out what the lump is.
Think about the what ifs. Think about how i feel. Think about how i will react. Think about what will happen next. Think about how the MIT will feel. Think about how my parents will feel. Think about how my friends will feel.
i also lost 2 friends this past week. Not because of death, but because of how i handled my fear. They got mad about how i reacted to the fear i was feeling. They got mad about how others were being made to feel, without talking to them. They decided things about me. i have decided things about them. i have decided that they have rules that they expect others to live by, but not live that way themselves. i have decided i don't need to work so hard to keep friends. Those that truly care about me, and are friends of mine, understand me, and let me live how i please, knowing that i don't break their confidences, or purposely act to hurt them. Those that truly are my friends, know me, help me, and are there for me, just as i know them, help them, and are there for them. i am sad i am loosing people i thought cared for me so much, but am less stressed, knowing i don't have to live up to expectations they don't even hold up themselves.
What saddens me most about the situation is the MIT. He is mad. He misses them. He misses A. He says that they acted like Him. Mad about something and not able to let it go or talk about it. He talked about how they "lied" about forgiving me before. He talked about how He did that with Mr. B. at karate. He understands that they don't hate Him, and aren't mad at Him, but He knows the friendship has changed, and it does affect how often they will and how willing they will be to see Him, with them being mad at me. i like how "grown-up" He is getting.
He knows what is happening with me. He knows about the appointment and we have talked about what we are hoping the doctor will say. He is scared i will die, like others in my Mom's family, or like others from His church. He is scared how things will change if it isn't nothing or isn't a cyst.
i made Him come with me to see D and E and P. He likes that D is like Him. He likes that someone else He knows forgets words, slurs, or is shaky. He feels like He isn't alone so much in what He experiences. He understands how serious D's condition is, but He feels connected to her. He says D will be waiting to greet Him when He dies, along with Papa. He thinks D and Papa will be friends in heaven. He likes that idea. He liked that everyone was bald. He doesn't want me to go bald.
The MIT is having more seizures. He seized at school yesterday. He fell 5 times in a 1 1/2 hour period on Tuesday. He forgets more and more words. This morning He was so pale when He woke up. His condition is getting more and more unstable. Both with the way His balance is, and with His health. More seizures is a bad thing. More falling is a bad thing. i keep looking forward and i see Him spending more and more and more time in His wheelchair. He already is. He doesn't spend an entire day out of it, or without loosing muscle tone. Sure we don't use it much here at home, but even here He spends more and more time without a side working. It is a daily norm now.
Wow, i have now spent an entire 1/2 hour writing. That means only 1 hour before i leave to see the doctor. That means i have 1 1/2 hours before i see the doctor. That means 1 1/2 hours before i find out what the lump is.
Thursday, October 16, 2008
Dear Sir
It would have been 9 years Master. 9 years since You and i met on October 13th. i have cried for the last 2 nights. Still grieving over You . Still wishing You were here. Still wishing things were different. Still wishing You had kept Your promise that last night to never leave me again. Ever anniversary, i get lost in You.
You would be very proud and worried about the MIT. You have missed a lot. He is growing into a more mature boy. He is speaking up for Himself more at school. He is learning to do more things. He is taking more chances. He is still very obsessive, but sometimes in a good way. He is even telling me when He has homework and wants to do it with me, not have me do it for Him. His physical issues are getting worse. He can no longer stand still for any amount of time before loosing His balance. He falls more than He stands or walks. He is loosing sides more and more. He is having more full blown days. He has seizures now. Heck, He is on meds now. We are having to play with His meds to make the seizures less, but it doesn't seem to be working.
When You were around Master, i would have looked to You for comfort. i would have looked to you for reassurance about how He was doing, or if i am doing it right, or if i am worrying too much. i don't have that now. i doubt myself a lot. i doubt whether i can leave Him with the nurse. i doubt if giving Him these meds are actually helping verse hurting. i doubt whether any of His falls are worse than they look, or if i am panicking at some of them. It sucks not having You here to help make calls on that.
Yes, today i am feeling lost. i am lost in my head and in my feelings. i am lost in remembering both the good times and the bad. i still blame You for leaving me, even if it was in death. It still feels like You abandoned me and the MIT. i am still lost in all the lies You told, and the position You put me in after You died. i still wonder why You never followed through with anything You said would happen. From writing a will, to giving proper instructions. i am still very angry about that. The lies keep coming back to me. Lies about You playing in public when You said You wouldn't. Lies about what You had told other people. Heck, i recently found out that even though You told me i was no slave, and couldn't be a slave, that You told others i was Your slave. i also still hold a grudge about how far Your personal growth took You, and how i backed You up in it, but You held me back and wouldn't even try some of the stuff that i wanted to explore.
i have done some personal growth since You died. i am cooking now, and finding my feet in trying new recipes. i have taken the MIT and Dad camping twice now. We are planning a third trip in Nov. i am back to going to the diabetic clinic, and i have made a few commitments in regards to that. i am eating yogurt at every meal. i am getting my blood work done every 3 months. i am eating lunch 3-4 times a week. i am checking my blood sugars about 2 times a day. That one is really hard for me, but i am trying. i am going out more. Well, when i can afford it. i am even seeing someone pretty regularly. He is nice, and kind, and very new. The situation is more open than it was with You and B. Heck, his wife likes me coming over and spending time with them both. Still, it just isn't the same.
i miss the intensity You and i had. The way our energies seemed to mesh. The way we played and i could feel You with every stroke. Gods i could use that again. You hooking me up in the basement. All our hard toys hitting my skin. me taking all Your energy and loving it. You teasing me and hurting me. my head lost in the pain and in You. Your marks on my skin from the cane or the Kiss. You cutting into my skin, and then lighting it up. i miss that so much. i so need that. He and i don't play that way. He isn't ready for it.
Yes, i am lost in my feelings today. i have been for the last few days. i have even sprayed Your pillow again. i am running out of Your cologne. Your smell relaxes me, and calms me. It is the closest thing to having You here with me, in bed.
9 years ago i met You, and You changed my life. i love You.
You would be very proud and worried about the MIT. You have missed a lot. He is growing into a more mature boy. He is speaking up for Himself more at school. He is learning to do more things. He is taking more chances. He is still very obsessive, but sometimes in a good way. He is even telling me when He has homework and wants to do it with me, not have me do it for Him. His physical issues are getting worse. He can no longer stand still for any amount of time before loosing His balance. He falls more than He stands or walks. He is loosing sides more and more. He is having more full blown days. He has seizures now. Heck, He is on meds now. We are having to play with His meds to make the seizures less, but it doesn't seem to be working.
When You were around Master, i would have looked to You for comfort. i would have looked to you for reassurance about how He was doing, or if i am doing it right, or if i am worrying too much. i don't have that now. i doubt myself a lot. i doubt whether i can leave Him with the nurse. i doubt if giving Him these meds are actually helping verse hurting. i doubt whether any of His falls are worse than they look, or if i am panicking at some of them. It sucks not having You here to help make calls on that.
Yes, today i am feeling lost. i am lost in my head and in my feelings. i am lost in remembering both the good times and the bad. i still blame You for leaving me, even if it was in death. It still feels like You abandoned me and the MIT. i am still lost in all the lies You told, and the position You put me in after You died. i still wonder why You never followed through with anything You said would happen. From writing a will, to giving proper instructions. i am still very angry about that. The lies keep coming back to me. Lies about You playing in public when You said You wouldn't. Lies about what You had told other people. Heck, i recently found out that even though You told me i was no slave, and couldn't be a slave, that You told others i was Your slave. i also still hold a grudge about how far Your personal growth took You, and how i backed You up in it, but You held me back and wouldn't even try some of the stuff that i wanted to explore.
i have done some personal growth since You died. i am cooking now, and finding my feet in trying new recipes. i have taken the MIT and Dad camping twice now. We are planning a third trip in Nov. i am back to going to the diabetic clinic, and i have made a few commitments in regards to that. i am eating yogurt at every meal. i am getting my blood work done every 3 months. i am eating lunch 3-4 times a week. i am checking my blood sugars about 2 times a day. That one is really hard for me, but i am trying. i am going out more. Well, when i can afford it. i am even seeing someone pretty regularly. He is nice, and kind, and very new. The situation is more open than it was with You and B. Heck, his wife likes me coming over and spending time with them both. Still, it just isn't the same.
i miss the intensity You and i had. The way our energies seemed to mesh. The way we played and i could feel You with every stroke. Gods i could use that again. You hooking me up in the basement. All our hard toys hitting my skin. me taking all Your energy and loving it. You teasing me and hurting me. my head lost in the pain and in You. Your marks on my skin from the cane or the Kiss. You cutting into my skin, and then lighting it up. i miss that so much. i so need that. He and i don't play that way. He isn't ready for it.
Yes, i am lost in my feelings today. i have been for the last few days. i have even sprayed Your pillow again. i am running out of Your cologne. Your smell relaxes me, and calms me. It is the closest thing to having You here with me, in bed.
9 years ago i met You, and You changed my life. i love You.
Saturday, October 11, 2008
A week in review
Last weekend went great. We had a great time going camping. Sure it was chilly, but we had the heater and a nice fire to keep us warm. Add the bonus of a nice sunny Sunday and a slightly sunny Saturday, and we had a great time. MIT tried fishing again. He got bored again. We did get to see gaggles of Canadian Geese fly in and land on the lake. Now there is a sound that is undescribable. Even Dad enjoyed that part. There was no rain. It was great. The only problem was after we had packed up and were ready to go. The Beast (van) didn't start and we had to wait for CAA to save us. Oh, and yes we are going again in November. i know some people will think we are crazy, but we are all enjoying the quiet, the undivided attention of each other, and the learning how to survive in that kind of weather. i can actually see us possibly doing this every month (well, we will see). i know that next year we will be doing more camping. It is just fun.
After getting back from Camping, i found out my friends got together and did a head shaving. God i was hurt. No one talked to me about it. i could have done it while camping and had Dad and the MIT help me. It would have added something to the weekend. It isn't just that though. i am the kind of person that will sit back and wait for someone to ask for help. i put out the offer, and then let them come to me. i don't want to be over crowded when i am going through a crisis, so i try not to do that to others. They haven't really called. On top of that, i haven't heard from L&D since camp or since the announcement about D. i have left messages, but heard nothing. i probubly insulted them again, but they aren't telling me. Same as last year i take it.
News about D is not good. D isn't getting any better. She is getting worse. She isn't strong enough for chemo. It is a wait and see now.
News about the MIT isn't good. He is seizing more and more. He seized at least 4 times on the camping weekend. We have upped His meds. He doesn't know. He doesn't need to know. He is convinced He doesn't have seizures, because i have said all these years that His AHC wasn't seizures. He isn't ready to know He is getting worse. The school has noticed. They have seen Him using His chair more and more. The thing i see every day, is my child dying. The more seizures, the more chance of stuff going wrong, and the prognosis at this point is more seizures until He dies. This sucks
Other than that, this week has been quiet. Nothing really happening here at home. i have been taking care of the house. i have been doing dishes. i have been doing laundry. i have been taking my meds. i have been watching my blood sugars lower. That feels good. i have been vacuuming and stuff. The house actually feels tidy and clean. i have been heating the house with candles again.
The only exciting thing was that M and La and baby girl came over Tuesday night. It was nice having them all here. Today i am going to their place for some quiet and alone time with M. Plus, tomorrow i don't have to come home early, so will get to spend some time at the hobby shop watching, and maybe participating in a few Magic games.
OK, time for a shower and to get dressed and to finish packing up my stuff for the treck out.
After getting back from Camping, i found out my friends got together and did a head shaving. God i was hurt. No one talked to me about it. i could have done it while camping and had Dad and the MIT help me. It would have added something to the weekend. It isn't just that though. i am the kind of person that will sit back and wait for someone to ask for help. i put out the offer, and then let them come to me. i don't want to be over crowded when i am going through a crisis, so i try not to do that to others. They haven't really called. On top of that, i haven't heard from L&D since camp or since the announcement about D. i have left messages, but heard nothing. i probubly insulted them again, but they aren't telling me. Same as last year i take it.
News about D is not good. D isn't getting any better. She is getting worse. She isn't strong enough for chemo. It is a wait and see now.
News about the MIT isn't good. He is seizing more and more. He seized at least 4 times on the camping weekend. We have upped His meds. He doesn't know. He doesn't need to know. He is convinced He doesn't have seizures, because i have said all these years that His AHC wasn't seizures. He isn't ready to know He is getting worse. The school has noticed. They have seen Him using His chair more and more. The thing i see every day, is my child dying. The more seizures, the more chance of stuff going wrong, and the prognosis at this point is more seizures until He dies. This sucks
Other than that, this week has been quiet. Nothing really happening here at home. i have been taking care of the house. i have been doing dishes. i have been doing laundry. i have been taking my meds. i have been watching my blood sugars lower. That feels good. i have been vacuuming and stuff. The house actually feels tidy and clean. i have been heating the house with candles again.
The only exciting thing was that M and La and baby girl came over Tuesday night. It was nice having them all here. Today i am going to their place for some quiet and alone time with M. Plus, tomorrow i don't have to come home early, so will get to spend some time at the hobby shop watching, and maybe participating in a few Magic games.
OK, time for a shower and to get dressed and to finish packing up my stuff for the treck out.
Friday, October 03, 2008
Another Camping Weekend....in this weather????
Yes it is another camping weekend. One for the MIT again. One we planned a few weeks ago. All because i created a camping monster back in September. Really. i am looking forward to it. Even knowing, now, that the weather is going to be so damned cold. Even after this happened...... 
Yes, that is hail. It hailed yesterday. Today it is supposed to rain for a bit. Today it is only supposed to get up to 11C. Tonight it is to be a balmy 7C. Yes we have a heater. Yes it is packed. Yes i actually packed the extension cord. Yes we should have some heat during our little experience. Dad is bringing the money for firewood. We are going to use a lot. This time i have even packed myself a mug so i can have tea and hot chocolate while the boys have coffee. And, i am packing lots and lots and lots of blankets and fuzzy socks just for me.
Yes, that is hail. It hailed yesterday. Today it is supposed to rain for a bit. Today it is only supposed to get up to 11C. Tonight it is to be a balmy 7C. Yes we have a heater. Yes it is packed. Yes i actually packed the extension cord. Yes we should have some heat during our little experience. Dad is bringing the money for firewood. We are going to use a lot. This time i have even packed myself a mug so i can have tea and hot chocolate while the boys have coffee. And, i am packing lots and lots and lots of blankets and fuzzy socks just for me.Meals are going to be easy. Tonight is hamburger and hotdogs. Saturday is eggs, bacon, sausages, then salmon and tuna sandwiches, then hamburgers and hotdogs. Sunday is pancakes. i have a feeling i will want something warmer. i am thinking of packing the dutch oven and making stew or something for Saturday dinner for me. Something warm i can wrap my hands around. Then again, i could just bring what is frozen in my freezer from the last time i made stew.
It is funny how excited the MIT is about this. i think it is the undevided, non-electronic distraction idea of it all. If i could figure out a way to get Dad to go camping in November, i wouldn't mind going next month. Then again, i would also get to complain about how cold it is, and will have to master dutch oven cooking.
Last weekend was hell. MIT had a 3 hour seizure. We didn't take Him to hospital. Instead my Mom looked after Him while i went to a Magic tournament with M. i just couldn't let Thelma look after Him. She has no idea of all the different types of seizures there are, and wouldn't know what to do with Him. So in comes Mom and Dad to the rescure, so i could have some i looked after baby girl the entire time and it was nice. i like relating to a 2 year old when i am stressed out. That is all we did. We played inside the Beast. We had lunch together, and we waited for her father. After that, we headed back to Welland. It was nice there too.
When the MIT came home, He seems just fine. Mom did say that He was lathargic after the seizures were over, for almost 5 hours.
This week i was a good girl. i had my blood work done. i hate getting blood work done. i am waiting on the results. i have to call the diabetic clinic so i have enough meds to last me until the section 8 comes through. The government takes so long.
Not being able to see M this weekend is killing me. i am actually really missing Him. Yes i saw Him last weekend, along with baby girl, and then later with La, but still, i miss Him. i miss Him here, alone with me. We won't be getting that time together next weekend. Next weekend is going to the Niagara party. Well maybe. We talked about it last night, and it might work out that we get alone time that night. i miss alone time.
He wants to get me comfortable about sitting on His lap without freaking out. Yes He is a big boy, but still, i don't like it. i feel like i will crush Him. Like i will hurt His leg. Like i will kill Him or something. Logically, i know it won't be that way. Hell, He can lift me up. There is just something i can't wrap my head around. He wants to work on it with me, because He wants to cuddle like that, especially at His place, where there isn't a couch. We will figure it out.
As of right now, i am going to head off to bed, so i can be lively around noon, head off to get gas and smokes, then be ready for Dad to be here and pack up the van. Then, once the MIT gets home, we are off to camping.
Wish us luck and hope, for my sake, i actually bring enough stuff to keep us warm.
Sunday, August 10, 2008
Catching up yet again (Day 54 of Summer Vacation)
i don't even know when the last time i updated was. All i know is what has been happening recently.
1 - P&E - P&E went camping for over a week. i am currently babysitting 2 hamsters, and keeping an eye on Salem. The MIT went there Tuesday afternoon, to make sure Salem was doing ok. Salem probably has breast cancer. Right now, the plan is just to make sure she is comfortable. Tuesday she let me pick her up, and she went to eat while the MIT and i were there. We also picked up the hamster's balls so they could run around our house. The MIT doesn't like Fritz (female) but loves Seven (male).
2 - The MIT - On Tuesday night, after karate, the MIT came home full blown. He proceeded to have a 20 minute seizure, and then continued to seize on and off for 2 hours. i called 911, and He was taken to the hospital. There we stayed until Saturday afternoon. During that time, the MIT seized 2 more times, had an EEG that showed some spikes, and has had His med changed. He is now on Topamax. Well, starting Topamax. We are putting Him on it slowly. He is starting to show symptoms. He feels like His feet want to leave His body. He gets dizzy easily. Dad says the MIT looses His right side about an hour after taking his med. i will wait and see. i don't like that they sent us home on Saturday. i wanted Him in until Monday, just in case. At least with His getting out on Saturday, He was able to go to His grading. He now has a blue-stripe belt. He was so proud of it, He brought it home to me. i am really proud of Him.
3 - me - i am tired. i am stressed. i missed my therapy session because i forgot what time it was scheduled for. i am anxious. What if something happens while i am away? What if something goes wrong with the MIT's new meds? i do know not to live with "what if's" but i can't help it. They are in the back of my head. i am so tired. i can't seem to catch up on sleep, no matter how much time i am given. i want to cut so badly. i want to feel in control. my house isn't anywhere close to what i count as clean. i feel like there is just so much to do. i still have 2 appointments this week. One for therapy, and one with the doctor. Add to that, preparations for camp.
4 - Camp - For most people, there is only 4 sleeps until camp. For me, 2 sleeps. One on Tuesday evening, and one on Wednesday evening. i haven't gone shopping for everything, or anything, yet. i haven't started to gather stuff. Tomorrow i will be starting that. i still have a tunic and maybe a toga to make for J. i still have to learn how to roll. i want to be able to relax starting Thursday. i want to go and just "be". i am looking forward to pain. Sure it is by a hand i haven't even met yet, but at least i know i will feel pain. Yes, i am excited, but i am also worried. i am worried i won't have the money i need to buy what i need for camp. i am worried i will forget stuff. i am worried i will be so tired by Thursday, that i won't want to participate in anything to do with camp.
i guess that is all i need to catch up on. i am going to go and watch the Olympics. At least i have something to watch all night.
1 - P&E - P&E went camping for over a week. i am currently babysitting 2 hamsters, and keeping an eye on Salem. The MIT went there Tuesday afternoon, to make sure Salem was doing ok. Salem probably has breast cancer. Right now, the plan is just to make sure she is comfortable. Tuesday she let me pick her up, and she went to eat while the MIT and i were there. We also picked up the hamster's balls so they could run around our house. The MIT doesn't like Fritz (female) but loves Seven (male).
2 - The MIT - On Tuesday night, after karate, the MIT came home full blown. He proceeded to have a 20 minute seizure, and then continued to seize on and off for 2 hours. i called 911, and He was taken to the hospital. There we stayed until Saturday afternoon. During that time, the MIT seized 2 more times, had an EEG that showed some spikes, and has had His med changed. He is now on Topamax. Well, starting Topamax. We are putting Him on it slowly. He is starting to show symptoms. He feels like His feet want to leave His body. He gets dizzy easily. Dad says the MIT looses His right side about an hour after taking his med. i will wait and see. i don't like that they sent us home on Saturday. i wanted Him in until Monday, just in case. At least with His getting out on Saturday, He was able to go to His grading. He now has a blue-stripe belt. He was so proud of it, He brought it home to me. i am really proud of Him.
3 - me - i am tired. i am stressed. i missed my therapy session because i forgot what time it was scheduled for. i am anxious. What if something happens while i am away? What if something goes wrong with the MIT's new meds? i do know not to live with "what if's" but i can't help it. They are in the back of my head. i am so tired. i can't seem to catch up on sleep, no matter how much time i am given. i want to cut so badly. i want to feel in control. my house isn't anywhere close to what i count as clean. i feel like there is just so much to do. i still have 2 appointments this week. One for therapy, and one with the doctor. Add to that, preparations for camp.
4 - Camp - For most people, there is only 4 sleeps until camp. For me, 2 sleeps. One on Tuesday evening, and one on Wednesday evening. i haven't gone shopping for everything, or anything, yet. i haven't started to gather stuff. Tomorrow i will be starting that. i still have a tunic and maybe a toga to make for J. i still have to learn how to roll. i want to be able to relax starting Thursday. i want to go and just "be". i am looking forward to pain. Sure it is by a hand i haven't even met yet, but at least i know i will feel pain. Yes, i am excited, but i am also worried. i am worried i won't have the money i need to buy what i need for camp. i am worried i will forget stuff. i am worried i will be so tired by Thursday, that i won't want to participate in anything to do with camp.
i guess that is all i need to catch up on. i am going to go and watch the Olympics. At least i have something to watch all night.
Sunday, July 13, 2008
Nightmare, or Dream? (Day 26)
i couldn't write this yesterday. That is when it happened. i needed a full night's sleep to process it. i was napping. i know i was napping. It was the only way i could have seen this. i dreamed about the MIT's death. i dreamed that it happened today. (dream in italics)
my Mom and Dad called. They had called 911 and were waiting for the ambulance. The MIT was doing that passed out, non-responsive thing. i was driving over there and then called them on my cell to find out when the ambulance got there and were leaving. i made my way to the hospital. Mom and Dad met me at the waiting room. i was not allowed to go into the emergency area. Something happened in the ambulance. He stopped breathing. i fought to be let in. They wouldn't let me in to see Him. i reminded them that i would not get in the way. That i just needed to be on the other side of the curtain. That i needed to be with my son, and that being in the waiting area was making me worse. They let me passed the locked door. They let my parents come with me. My Sis showed then, and they let her in too. After waiting what felt like forever, they let me in to see Him. He was on a respirator. He had wires to the heart monitor. He had IV's. He was not fighting the respirator. He was so pale.
i went out for a smoke. i left Mom and Sis with Him. i needed to make calls. Today was the party for M&S. We were supposed to go there today. i called P and E, telling them we couldn't make it. i explained the MIT was in the hospital. i asked them to let L and D know what was going on (i did not explain about the MIT's stopping breathing and being on the respirator) and to give M&S our love. i told them they could call me on the cell if they needed to talk to me.
Dad and i went back in, and were met by Mom and Sis. The MIT was getting worse. His blood pressure was dropping. His heart was having trouble keeping up. They were moving Him to ICU. They were going to get an emergency EEG done. They didn't know what was going on in His head. i wasn't allowed to go with Him. i didn't care. i went into the area, and stayed there. i was not going to miss saying hello when the MIT woke.
We were taken to ICU. It was about 2:00 pm by now. They wanted me out of the room while the hooked Him up to everything. They tried to distract me by asking me questions. i wasn't able to answer. my concentration was on the MIT. Mom and Dad answered the questions for me. i just wasn't going to leave Him alone. Not with nurses and doctors and people that didn't know Him. He needed me there. i needed to be there. i wouldn't go for a smoke. i wouldn't go for food. The staff were worried about me. my family was worried about me.
At 5:00pm, the MIT died. i wasn't there. They moved me out of the room. They set to work on Him. They shocked Him. They pumped more meds into Him. They never did get the EEG. They did all they could. He wasn't there anymore.
Even in the dream i was in a cloud. i called P and E and told them. They told L and D. i don't know who else they told. They wanted to know where i would be. Would i be at home alone? Would i be at my parent's house? They wanted to see me when they got back. i told them i was fine. i know my voice sounded hollow. i told them i wanted to go home and be alone, but my parents were taking me to their place. my Doctor called. She wanted me in the hospital under observation. my parents said no. They said what happened next was totally up to me.
The next day i was taken home. i answered phone messages. i wasn't really in my head. i felt lost. i picked out the MIT's clothes. Red shirt. Green pants. Tony Stewart cap. i told Mom and Dad that He was to be buried with His green pillow and Papa blankie. i called Karate. i told them what happened. They wanted Him to get a black belt. i said He could be buried with it. Everyone wanted the details. When. Where. i couldn't give them any. i didn't know myself. i allowed Mom and Dad to handle that. i kept saying "no silk pillow, just His green pillow". People started to show up here. They wanted to be here. i wanted to be alone. i wanted everyone out of my house. i wanted to be here. i wanted to be in His bed. They wanted to be with me and make sure i was ok.
i woke up before the funeral. i woke up thinking He was dying. i woke up grieving for something that hadn't happened. i woke up crying. i called my Mom and asked how He was. i needed to make sure that He was fine. i needed to know that they would call me if something went wrong. Mom kept saying i could go over and check on Him. i couldn't do that. Not in the state i was in. i would have freaked Him out. i couldn't stop crying. i was sure it would happen. i am still leery about it happening. i won't feel better until He is here, and we are getting ready to go to the party.
For now, everything is normal. Mom and Dad have Him. i am getting ready for the drive and party. i know in my head that none of this will happen today. my heart is not quite sure.
my Mom and Dad called. They had called 911 and were waiting for the ambulance. The MIT was doing that passed out, non-responsive thing. i was driving over there and then called them on my cell to find out when the ambulance got there and were leaving. i made my way to the hospital. Mom and Dad met me at the waiting room. i was not allowed to go into the emergency area. Something happened in the ambulance. He stopped breathing. i fought to be let in. They wouldn't let me in to see Him. i reminded them that i would not get in the way. That i just needed to be on the other side of the curtain. That i needed to be with my son, and that being in the waiting area was making me worse. They let me passed the locked door. They let my parents come with me. My Sis showed then, and they let her in too. After waiting what felt like forever, they let me in to see Him. He was on a respirator. He had wires to the heart monitor. He had IV's. He was not fighting the respirator. He was so pale.
i went out for a smoke. i left Mom and Sis with Him. i needed to make calls. Today was the party for M&S. We were supposed to go there today. i called P and E, telling them we couldn't make it. i explained the MIT was in the hospital. i asked them to let L and D know what was going on (i did not explain about the MIT's stopping breathing and being on the respirator) and to give M&S our love. i told them they could call me on the cell if they needed to talk to me.
Dad and i went back in, and were met by Mom and Sis. The MIT was getting worse. His blood pressure was dropping. His heart was having trouble keeping up. They were moving Him to ICU. They were going to get an emergency EEG done. They didn't know what was going on in His head. i wasn't allowed to go with Him. i didn't care. i went into the area, and stayed there. i was not going to miss saying hello when the MIT woke.
We were taken to ICU. It was about 2:00 pm by now. They wanted me out of the room while the hooked Him up to everything. They tried to distract me by asking me questions. i wasn't able to answer. my concentration was on the MIT. Mom and Dad answered the questions for me. i just wasn't going to leave Him alone. Not with nurses and doctors and people that didn't know Him. He needed me there. i needed to be there. i wouldn't go for a smoke. i wouldn't go for food. The staff were worried about me. my family was worried about me.
At 5:00pm, the MIT died. i wasn't there. They moved me out of the room. They set to work on Him. They shocked Him. They pumped more meds into Him. They never did get the EEG. They did all they could. He wasn't there anymore.
Even in the dream i was in a cloud. i called P and E and told them. They told L and D. i don't know who else they told. They wanted to know where i would be. Would i be at home alone? Would i be at my parent's house? They wanted to see me when they got back. i told them i was fine. i know my voice sounded hollow. i told them i wanted to go home and be alone, but my parents were taking me to their place. my Doctor called. She wanted me in the hospital under observation. my parents said no. They said what happened next was totally up to me.
The next day i was taken home. i answered phone messages. i wasn't really in my head. i felt lost. i picked out the MIT's clothes. Red shirt. Green pants. Tony Stewart cap. i told Mom and Dad that He was to be buried with His green pillow and Papa blankie. i called Karate. i told them what happened. They wanted Him to get a black belt. i said He could be buried with it. Everyone wanted the details. When. Where. i couldn't give them any. i didn't know myself. i allowed Mom and Dad to handle that. i kept saying "no silk pillow, just His green pillow". People started to show up here. They wanted to be here. i wanted to be alone. i wanted everyone out of my house. i wanted to be here. i wanted to be in His bed. They wanted to be with me and make sure i was ok.
i woke up before the funeral. i woke up thinking He was dying. i woke up grieving for something that hadn't happened. i woke up crying. i called my Mom and asked how He was. i needed to make sure that He was fine. i needed to know that they would call me if something went wrong. Mom kept saying i could go over and check on Him. i couldn't do that. Not in the state i was in. i would have freaked Him out. i couldn't stop crying. i was sure it would happen. i am still leery about it happening. i won't feel better until He is here, and we are getting ready to go to the party.
For now, everything is normal. Mom and Dad have Him. i am getting ready for the drive and party. i know in my head that none of this will happen today. my heart is not quite sure.
Thursday, July 10, 2008
Just another day (day 23)
Today is just another day. Things are good. Things are moving slowly around here. We aren't in any hurry to do anything. We wake-up when we want. We eat when we are hungry. We get dressed slowly. It is a nice, slow, summer.
i am really enjoying the new thermostat. i can see exactly what the temp is in the house. i have used less a/c this year, than any prior year. This will surely help my hydro bill. It will also help my gas bill in the winter. That is a good thing.
The MIT is still hurting. i don't know why His hip has been hurting so much. i will have to ask the doctor today about it again. i am going to ask her to refer Him to a specialist. He needs to be able to walk without pain.
Today i will also be asking the doctor to refer me to the diabetic clinic at MUMC. i need their help. i am doing my best, and have made some really good changes, but i am still not able to handle my cravings. i need backup with that. i am currently eating the same breakfast every morning. variety at that meal is not an issue. The same thing is easy, and i feel comfortable with it. It is healthy and good for me, and i actually eat breakfast now. Lunches are my most difficult. i don't really know what to reach for. Dinners are ok, as long as i eat it late. If i eat it too soon, i start craving more and more food as the night goes on. That along with the no sleep seems to work really well.
Over the last week, the MIT has had a really rough time with His body. His right side was gone (off and on) from Thursday until Thursday, and then His body changed sides. His left side has been gone (on and off) since then. His balance is sucking. He falls even when both sides work really well. His physical milestones are just leaving Him. At least His social skills, and His cognitive abilities are growing. That sucks in its own way. He is more aware of how much His body is letting Him down.
Well, that is all for today. i have realized i write more in my written journal than here, and i get lost in what i actually post here verses what i write in there. i have been writing so much, i will soon need a new journal.
i am really enjoying the new thermostat. i can see exactly what the temp is in the house. i have used less a/c this year, than any prior year. This will surely help my hydro bill. It will also help my gas bill in the winter. That is a good thing.
The MIT is still hurting. i don't know why His hip has been hurting so much. i will have to ask the doctor today about it again. i am going to ask her to refer Him to a specialist. He needs to be able to walk without pain.
Today i will also be asking the doctor to refer me to the diabetic clinic at MUMC. i need their help. i am doing my best, and have made some really good changes, but i am still not able to handle my cravings. i need backup with that. i am currently eating the same breakfast every morning. variety at that meal is not an issue. The same thing is easy, and i feel comfortable with it. It is healthy and good for me, and i actually eat breakfast now. Lunches are my most difficult. i don't really know what to reach for. Dinners are ok, as long as i eat it late. If i eat it too soon, i start craving more and more food as the night goes on. That along with the no sleep seems to work really well.
Over the last week, the MIT has had a really rough time with His body. His right side was gone (off and on) from Thursday until Thursday, and then His body changed sides. His left side has been gone (on and off) since then. His balance is sucking. He falls even when both sides work really well. His physical milestones are just leaving Him. At least His social skills, and His cognitive abilities are growing. That sucks in its own way. He is more aware of how much His body is letting Him down.
Well, that is all for today. i have realized i write more in my written journal than here, and i get lost in what i actually post here verses what i write in there. i have been writing so much, i will soon need a new journal.
Friday, March 28, 2008
MIT
i am having a really hard time with the MIT. His depression is really getting to me. i can't fix it. All i can do is wait for the referral to go through, and hope He survives until then. On top of the depression, is His decline in stability, ability to walk, and having more bad days than good. i am His mother. i should be able to fix it. Yeah, right, like i have a magic wand or something.
Yesterday He came home so angry from karate. He was mad because He was given His second stripe on His blue belt. You would think that was a good thing. Not for Him. He doesn't think He deserves it. His self loathing is really bad right now. He couldn't hear me tell Him how proud i was that He was using His words and not His fists. Even today He couldn't hear how proud i was of Him. Feeling pride means liking something about yourself. He doesn't have that right now.
We are back to watching Charmed. It is a nice time for us to sit and laugh and cuddle and connect. He hates Himself so much, He wants the character "Leo" to heal Him. Tonight He called Himself a "half demon". i don't know if watching Charmed is such a good idea anymore.
Yesterday was also the first time in over a month that He actually walked off the school bus. His communication book did say that He lost a side in the morning. That is every day for the last 2 months. Every day when His body lets Him down. Every day when He has to rely on His chair or someone helping Him. Easter weekend was difficult. He went full blown for most of it. His physical abilities are letting Him down, and are progressing downward. It is like watching His body die. The reality is, that is actually what is going to happen. He is going to die. i am going to outlive my son.
i don't know how to help Him, other than listen, make sure His surroundings are safe, and tell Him i am proud of Him, even when He doesn't want to hear it, or can't hear it. i just get to sit and wait it out with Him. Wait for some professional to help the two of us get to the other side.
Yesterday He came home so angry from karate. He was mad because He was given His second stripe on His blue belt. You would think that was a good thing. Not for Him. He doesn't think He deserves it. His self loathing is really bad right now. He couldn't hear me tell Him how proud i was that He was using His words and not His fists. Even today He couldn't hear how proud i was of Him. Feeling pride means liking something about yourself. He doesn't have that right now.
We are back to watching Charmed. It is a nice time for us to sit and laugh and cuddle and connect. He hates Himself so much, He wants the character "Leo" to heal Him. Tonight He called Himself a "half demon". i don't know if watching Charmed is such a good idea anymore.
Yesterday was also the first time in over a month that He actually walked off the school bus. His communication book did say that He lost a side in the morning. That is every day for the last 2 months. Every day when His body lets Him down. Every day when He has to rely on His chair or someone helping Him. Easter weekend was difficult. He went full blown for most of it. His physical abilities are letting Him down, and are progressing downward. It is like watching His body die. The reality is, that is actually what is going to happen. He is going to die. i am going to outlive my son.
i don't know how to help Him, other than listen, make sure His surroundings are safe, and tell Him i am proud of Him, even when He doesn't want to hear it, or can't hear it. i just get to sit and wait it out with Him. Wait for some professional to help the two of us get to the other side.
Friday, March 14, 2008
Still processing
i am still processing the death of Leslie, and why it is throwing me for such a loop. i guess the idea that i will outlive my child (forgoing car accident, death by illness or anything like that). It is hard to wrap my head around, even though i have had to continually process the idea for his entire life.
The MIT and i talked about His funeral again. We talked about how He isn't going to die until He is 200. We talked about how everyone will be made to wear a red top and green pants. There will be no balloons or flowers, He hates those. There will be rap music. He wants Mike Myers to be there, dressed like Shrek and "Fat B", combined. We talked about me crying, and being more upset about His dying than Mike's (He needed to hear that), because i have known Him longer. We talked about who else He wants to be there. We talked about His now wanting a "big box" rather than a "little box". He even knows who He wants to do the service.
The talk was done in a light manner. He kept asking how old i would be when He dies at 200 (222 for the record), and how old everyone else would be.
He is so fascinated by the idea that in heaven, He won't have AHC anymore. How it would be so much better than now. i won't let Him read the announcement or any of the other emails because of this. People keep sending their condolences and saying how much better it is for Leslie since she won't be suffering any more. i just don't see that as being the MIT.
Yes He struggles, and yes He gets frustrated, but He isn't suffering. He is living. He is thriving. He is exploring His world more. He is showing His need for Independence more.
This weekend, He is going to respite. i will have 2 nights of sleep. i need this weekend to ponder and process. i need this time to figure out how Leslie's death is really making me feel. i need this time to really look at my expectations for the MIT over the next few years. i need this time to decide if i want to start "fixing" the MIT, so He can be here longer, or if i just deal with one crisis at a time, and live each day for itself. Processing is the key to this weekend.
The MIT and i talked about His funeral again. We talked about how He isn't going to die until He is 200. We talked about how everyone will be made to wear a red top and green pants. There will be no balloons or flowers, He hates those. There will be rap music. He wants Mike Myers to be there, dressed like Shrek and "Fat B", combined. We talked about me crying, and being more upset about His dying than Mike's (He needed to hear that), because i have known Him longer. We talked about who else He wants to be there. We talked about His now wanting a "big box" rather than a "little box". He even knows who He wants to do the service.
The talk was done in a light manner. He kept asking how old i would be when He dies at 200 (222 for the record), and how old everyone else would be.
He is so fascinated by the idea that in heaven, He won't have AHC anymore. How it would be so much better than now. i won't let Him read the announcement or any of the other emails because of this. People keep sending their condolences and saying how much better it is for Leslie since she won't be suffering any more. i just don't see that as being the MIT.
Yes He struggles, and yes He gets frustrated, but He isn't suffering. He is living. He is thriving. He is exploring His world more. He is showing His need for Independence more.
This weekend, He is going to respite. i will have 2 nights of sleep. i need this weekend to ponder and process. i need this time to figure out how Leslie's death is really making me feel. i need this time to really look at my expectations for the MIT over the next few years. i need this time to decide if i want to start "fixing" the MIT, so He can be here longer, or if i just deal with one crisis at a time, and live each day for itself. Processing is the key to this weekend.
Thursday, March 13, 2008
Another one dead
This entry deserves a space of its own, so that is why i am posting it now.
Another "kid" with AHC has died. She was the oldest living person with AHC. She was 44 years old. She had a sever seizure, that left her unconscious until she died. Her body lived 1 week after the seizure, never waking up. She was from Montreal. She was what all parents of kids with AHC had looked to as a "bright light" and a chance at a future for our kids. She is gone now.
i never met her. Either has the MIT. It still feels like someone in our family has died.
Another "kid" with AHC has died. She was the oldest living person with AHC. She was 44 years old. She had a sever seizure, that left her unconscious until she died. Her body lived 1 week after the seizure, never waking up. She was from Montreal. She was what all parents of kids with AHC had looked to as a "bright light" and a chance at a future for our kids. She is gone now.
i never met her. Either has the MIT. It still feels like someone in our family has died.
Sunday, February 17, 2008
What a weekend
We'll start with Friday. i had a "date" set up for Friday night. my first date since Mike died. my first time with someone other than extended family since Mike died. Those plans were nearly cancelled because of the MIT
The MIT had one of His "passed out, come too, vomit, pass out" episodes. i called the ambulance early. i got Him to the hospital quickly. He scared a bunch of the nurses and doctors. He was in and out of consciousness for over 7 hours. They ran a CT and an ECG and found nothing wrong. His white count was a little high, but they think it is because He actually was having multipule seizures. After the 7 hours, He was back to His regular self. Walked right out of the hospital after having something to eat. We do have followup with His nuerologist. We may be changing His meds. At least He got better in time to go to Rygiel this weekend. That meant my "date" could go as planned
i met the guy on Collar Me. He was supposed to be dominant. Yeah right. He is more a submissive that thinks doming means pleasing the submissive and not himsef. That was fine, especially since i really needed to be "pampered". Let's just say, oral is a good thing. Oral for 3 hours is a good thing. Especially when you are the one receiving it.
To me, it was a nice "date". i got to be pampered and road hard sexually. i needed it. i needed the sexual release. Yes i am feel stiff from muscles barely used in almost 2 years. Other than that, i am feeling much more relaxed. i never new i could orgasm that many times. i never knew i was not just a gusher but a squirter at times. i know...TMI.
i don't know if i will ever see him again. i am inclined not to. i got what i needed, and am ready to move on. i don't want to be with someone that is "that" submissive. i need someone that can hurt me and not feel guilty about it. Yes the sex was good, and well needed, and well deserved, but i don't think i want anything more from him.
Overall, i am a happy camper today. Who knows what will happen next.
The MIT had one of His "passed out, come too, vomit, pass out" episodes. i called the ambulance early. i got Him to the hospital quickly. He scared a bunch of the nurses and doctors. He was in and out of consciousness for over 7 hours. They ran a CT and an ECG and found nothing wrong. His white count was a little high, but they think it is because He actually was having multipule seizures. After the 7 hours, He was back to His regular self. Walked right out of the hospital after having something to eat. We do have followup with His nuerologist. We may be changing His meds. At least He got better in time to go to Rygiel this weekend. That meant my "date" could go as planned
i met the guy on Collar Me. He was supposed to be dominant. Yeah right. He is more a submissive that thinks doming means pleasing the submissive and not himsef. That was fine, especially since i really needed to be "pampered". Let's just say, oral is a good thing. Oral for 3 hours is a good thing. Especially when you are the one receiving it.
To me, it was a nice "date". i got to be pampered and road hard sexually. i needed it. i needed the sexual release. Yes i am feel stiff from muscles barely used in almost 2 years. Other than that, i am feeling much more relaxed. i never new i could orgasm that many times. i never knew i was not just a gusher but a squirter at times. i know...TMI.
i don't know if i will ever see him again. i am inclined not to. i got what i needed, and am ready to move on. i don't want to be with someone that is "that" submissive. i need someone that can hurt me and not feel guilty about it. Yes the sex was good, and well needed, and well deserved, but i don't think i want anything more from him.
Overall, i am a happy camper today. Who knows what will happen next.
Sunday, January 20, 2008
Pain, and not the good kind
What ever relaxation i had, left this evening. Tonight, i got beat-up by my Kid, the MIT. i have a cut on my nose. i have hair missing. i have bruising from His punching me. i got afraid, and ran from Him. i am hurting, both physically and emotionally. How did i raise this nice Kid, but still He finds it OK, on some level, to take His anger about what ever, on me?
i wonder if i will get a black eye from His clawing at my face. i wonder how the bruises on my shoulder and back will last. i wonder if i am a bad mom.
i wonder if i will get a black eye from His clawing at my face. i wonder how the bruises on my shoulder and back will last. i wonder if i am a bad mom.
Wednesday, September 12, 2007
Feeling Blah
So, we survived the wedding. The MIT did great as the ring bearer. He remembered when He was supposed to talk. He didn't loose a side until after the ceremony (it was close, and He was worried, but it all worked out). He didn't complain to much about His picture being taken. It was a great ceremony. my favourite parts were when L said Her vows, and when D surprised the girls with their own rings. It made almost everyone cry. It was beautiful, simple, and exactly like them. It was an honour to be there, and to have the MIT a part of it.
This week is weird. i have nothing scheduled. It is like a week off for me. It is what the first week of school should have been like, but wasn't. The MIT hasn't argued with me about going to school yet. We still have last year's schedule. Sure it is a struggle to get up at 5:30 in the morning, but the half hour by myself, and then the half hour playing with the MIT and trying to get Him out of bed is worth it. It is nice i still have a cuddler. Every morning between 6 and 6:30 is spent cuddling with Him in bed, poking at Him and trying to get Him moving. It is a very special time for us.
It was hard explaining to the resource teacher about the MIT's prognosis. i had to do the same with the people at karate. The instructors at karate have really seen how much the MIT is loosing. They see that He has less balance, that He is requiring more help with one side gone, and that even though He is progressing socially and maturing, He is loosing skills He used to have. i am still grasping with His prognosis. The idea that He has reached His peak physically, and is falling backwards so quickly.
On Friday, Sandy and i talked about how i feel guilty that i no longer think about Mike each day. That there are more days in a row where i just don't talk to Him, or mention Him, or even think about how my life is different without Him. There are more and more days like that. The guilt is because part of me feels like i should be missing Him more. Then comes the feeling of loss. The feeling like i am missing feeling the grieving process. It is like i am missing feeling so bad. Weird. We are going to talk more about that soon. Apparently we are going to talk about my alcohol usage next visit. LOL. Drinking more than i normally do, 2 times a year, and we need to talk about it. That should be interesting.
Well, today is going to be another quiet day. Friday the MIT goes to Rygel again. Yes i will have 2 nights off again this weekend. Then 2 weekends after that, the MIT will be leaving for Australia. i have already made some plans. One of which is to visit where Mike is buried. i wonder how that will feel. i am going to take a picture of the MIT and i with me to put at His grave site. i need to do that for sure.
This week is weird. i have nothing scheduled. It is like a week off for me. It is what the first week of school should have been like, but wasn't. The MIT hasn't argued with me about going to school yet. We still have last year's schedule. Sure it is a struggle to get up at 5:30 in the morning, but the half hour by myself, and then the half hour playing with the MIT and trying to get Him out of bed is worth it. It is nice i still have a cuddler. Every morning between 6 and 6:30 is spent cuddling with Him in bed, poking at Him and trying to get Him moving. It is a very special time for us.
It was hard explaining to the resource teacher about the MIT's prognosis. i had to do the same with the people at karate. The instructors at karate have really seen how much the MIT is loosing. They see that He has less balance, that He is requiring more help with one side gone, and that even though He is progressing socially and maturing, He is loosing skills He used to have. i am still grasping with His prognosis. The idea that He has reached His peak physically, and is falling backwards so quickly.
On Friday, Sandy and i talked about how i feel guilty that i no longer think about Mike each day. That there are more days in a row where i just don't talk to Him, or mention Him, or even think about how my life is different without Him. There are more and more days like that. The guilt is because part of me feels like i should be missing Him more. Then comes the feeling of loss. The feeling like i am missing feeling the grieving process. It is like i am missing feeling so bad. Weird. We are going to talk more about that soon. Apparently we are going to talk about my alcohol usage next visit. LOL. Drinking more than i normally do, 2 times a year, and we need to talk about it. That should be interesting.
Well, today is going to be another quiet day. Friday the MIT goes to Rygel again. Yes i will have 2 nights off again this weekend. Then 2 weekends after that, the MIT will be leaving for Australia. i have already made some plans. One of which is to visit where Mike is buried. i wonder how that will feel. i am going to take a picture of the MIT and i with me to put at His grave site. i need to do that for sure.
Saturday, April 14, 2007
Going Backwards
That is the name of one of my new labels. It is all about the MIT. i am seeing things that are showing me how His body is changing against Him. i need to document it. i am going to do it here.
The newest backwards, is He is loosing His pincher grasp. It is one of the main development milestones that children go through. It is when they change from grasping things with their full hand, curling around the object into a fist, to being able to pick up things between their finger and thumb.
The first time i noticed it was a week ago. i thought it was a fluke. He had a couple of really bad days, and i thought this was all leftover from that. i can't ignore it as just because of an episode.
Today He physically was fine. He had full control of all His muscles. His body wasn't fighting against Him. Yet, He couldn't pickup a grape between His finger and thumb. He couldn't pick up a piece of paper between His finger and thumb. He was doing the full hand thing. He is loosing this milestone.
i don't know what it means, beyond that. i can't think of it meaning anything other than that. To think that way will change the way i act with Him. i know, because i did it before, when He was much younger. i let Him get away with things, i wouldn't normally have with a "normal" child His age. i don't want to start doing that again. i also don't want to set up situations where He will get frustrated. That isn't fair to Him. Instead i will sit back, and just watch, and enjoy Him. If i see something else happening, i will document it. Other than that, there isn't much more i can do.
The newest backwards, is He is loosing His pincher grasp. It is one of the main development milestones that children go through. It is when they change from grasping things with their full hand, curling around the object into a fist, to being able to pick up things between their finger and thumb.
The first time i noticed it was a week ago. i thought it was a fluke. He had a couple of really bad days, and i thought this was all leftover from that. i can't ignore it as just because of an episode.
Today He physically was fine. He had full control of all His muscles. His body wasn't fighting against Him. Yet, He couldn't pickup a grape between His finger and thumb. He couldn't pick up a piece of paper between His finger and thumb. He was doing the full hand thing. He is loosing this milestone.
i don't know what it means, beyond that. i can't think of it meaning anything other than that. To think that way will change the way i act with Him. i know, because i did it before, when He was much younger. i let Him get away with things, i wouldn't normally have with a "normal" child His age. i don't want to start doing that again. i also don't want to set up situations where He will get frustrated. That isn't fair to Him. Instead i will sit back, and just watch, and enjoy Him. If i see something else happening, i will document it. Other than that, there isn't much more i can do.