sulisvision weblog

Work again: yuck! ITs almost time to get down to work but I wanted to get a few things off my chest before I start talking to these people. Anyways I have been spending an awful lot of time thinking about who, and what I want around me. I have been sitting here taking stalk in who I am. Trying to figure out what I have to have in my life. What is important and what is just something i want. I know that I love you daddy, more everyday. I look in your eyes and I see the pain there and I want to fix it right now, but I know I can't. Not with out turning the world upside down, possibly landing in jail. So I wade through the everyday crap and I try to stay focused on you and the kids. I want you to know that you are my strength when I think I can't make it one more second, I think about you safe at home asleep in our bed, and I have the strength to go just a little bit farther. I know you are giving up hope and things are getting frustrating but please if you really love me, believe in me this one time with everything you have, We will get through this and across to the other side. I guess that I will go for now work is calling me and tears are starting to flow. I miss you, Daddy, see you when I get home.

posted by digitalsulis @ 12/07/2000 09:48:00 PM

Quick notes: I just wanted to say congrats to Dark Sir on the new edition to his household. I honestly hope you have better luck at polyamory then we did. I havn't been able to email latley because the lovely @Home mail server has been out so I havent been able to respond to you. If you are interested in joining the poly sub group I would love to introduce you to some of my friends. We all need someone to vent to now and then. To kimi and tats I miss you guys. Wish I could be on more but they make me work, damn them for that. I learned a new skill :Chainmail gotta love it. Buy some JUST DO IT!!!! Working on eggshell ornaments pics by christmas. Look for my wish list and a couple of new pages and some new design to the site to go with the new life with sulis weblog. If you would like to join us please send me an email at sulis59@hotmail.com and send me a pic some info on yourself and why you want to join/what you think you can contribute to the community(ie something that makes you unique). Happy Holidays love sulis

posted by digitalsulis @ 12/07/2000 12:06:00 AM

Life updates: Well Christmas is here and once again I have no money. Working so hard and running in circles trying to survive. Paying of the wages of sins past and present. Paying my dues so to speak. But at what cost? I see their little faces at school and I want for the life I always wanted to have. I wanted to be the mommy, the nurture with a big family out in the country. Teach your children well, it shall serve them for years to come. I believe this totally. As I stood their today watching those beautiful 1st graders planting plants out in the garden, I felt sooo much sadness. I the life I was promised. I know now I will never have. I want to live out in the country with my husband and lots of his beautiful children. I want to homeschool them and teach them to raise animals and grow plants, on top of learning about the world. I want to live in the warmth of my Daddy's love, knowing that I am pleasing him. Knowing that I am not causing him pain or fear or any other such negative emotion. I can't take the look in those eyes. IT burns me. Your not ready for everything I want, maybe you will never be. IF I try to force it history will repeat itself. More pain more suffering more regression into childlike behavior. So once again i sit her at work trying to make it through the night. Just so I can sleep in Daddies arms for a few precious hours. My only sanctuary to the pain around me. Waking up to see that beautiful face smiling at me is all I really need. For now! Time will fill the void time to grow up. well enought of this for now. Poma I love you, Have strength, stay true, lean on me if you have to. You know where I am. laughing, go for what you want nothing but time will tell if you will get it. As for telling me all about it, but me being the true female I am I am feeling a might under appreciated here. Being the one who is happily taken by Daddy, I shouldnt feel this way but I cant help but feel a little pang of jelousy when you all make such a big deal about tank girl or lola. I feel invisible or ugly or damaged or something. Stupid huh? Dont worry about it Just understand that although I dont mind you speaking your mind or telling me anything and everthing understand why i frown when you go on and on about other girls.I AM THE PRINCESS OF GRAVEYARD DAMNIT!! Daddy: MORE MORE MORE MORE MORE I love you HIgher then the skye and deeper then the sea and more more more more more more. See ya when I get home. love and kisses sulis

posted by digitalsulis @ 12/06/2000 09:51:00 PM

Holidays and humdrums: Its holiday time once again and I am sitting her wondering when its gonna be over. The mommy in me wants it to go good and the kids to have everything they want from Santa (yes, they are still young enough to really believe in Santa, besides we told the oldest that if he doesnt believe in santa anymore then i guess he doesnt get any present blackmail works everytime)The other part of me wants this month over and done with. On to 2001. I cant stand this time of year too many fucked up memories to enjoy it. Tal says I am being melodramatic about it. Its been 5 years but the momories are still very very fresh in my mind.

5 years ago on Dec th 19th, my life probably changed forever. In the following 2 weeks I would be witness to 3 beautiful children die, hear the anguish of a mother who had struggled for 2 years to keep her child healthy only to see him slip away on christmas eve. How could a God who is supposed to be so loving be so cruel.

Let me start at the beginning it started around Halloween I guess i Just made exscuses for it he was young his shoes where to big I dont konw he was just clumsy. My 18 month old Child started stumbling when he walked was having trouble feeding himself and after starting to use the potty was having trouble using it again. But this all was ignored because he looked so healthy. As we where walking to have our thanksgiving photos of the kids taken I noticed him holding his hand funny like people with nerve problems often do in what Tal affectionatly calls the "chest slap or retard position" I mentioned it in passing to him but we both let it slide. He passed his physical and took him shots in early december the doctor didnt say a thing. then ame the coffing at first not so bad then worse and worse. I took him to the doctor they told me to run a vaporizor and all the other things doctors tell you he had RSV. Sounds easy enough well it wasnt He started having seizure on the 17th at first maybe once or twice everyt 12 hours by the 18th midday he was having them one every 3 hours. the Doctors having never seen him seize thought i was insane. In fact Tal took him to the doctor that morning and was there for 2 hours no siezure the minute he got into the car and started driving away boom he has a siezure. So we kept trying to keep his fever down help him breath and all the things you are supposed to do for your children when they are sick. by the evening of the 19th I had had enough 3 days with little or no sleep and worrying that at any minute he would stop breathing drove me to the hospital emergency room no matter what the doctors told me and I was not leaving till they helped him. So as we sat in the emergency room he had several seizures but none while a medical personal was there. They wrote in the medical records (i read them sometime later that year) that it was the mother is hysterical seeing sysmptoms which where not there.SO they where going to give him discharge papers and I am now crying frustrated begging them to transfer him to childrens hospital for tests they refused. The tech walks in with the discharge paper for me to sign and as if on cue he begins to have one of the largest seizures he had had to date. the tech freaks and runs out screaming for the doctor. Needless to say an ambulance was there in less then 5 minutes and he was admitted to childrens in less then 15.

Once there I was greated by the first set of people who didnt think I was insane. they calmed me down and promised that they would take good care of him. They put him in a semiprivate room and pumped him full of drugs to stop the seizures nothing was working. This went on for days trying new drugs and them not working and all the while he was getting weaker and weaker haing increasing diffiulites breathing. His tiny little chest sinking evertime he tried to breath.Christmas eve came and they moed him into a room directlyt across from the icu nurses station so they could respond quicker. The little boy in his room with him was fighting the same problem. they where about the same age. His mother and I introduced ourselves. We hugged eachother telling eachother things are going to be ok even though we both where losing hope fast. The doctors came in to check on them and ended up putting a trach tube in the other little boy as his mother looked on in horror. My sons doctor turned to me and said if he doesnt start getting more oxygen into his body we are going to have to do the same thing. I noticed you where Catholic I think you should all your priest and have him baptised if he isnot baptiezed and have them adminster last rights. I refused saying nothing to my family who was struggling to keep the family together at home with 2 small children wondering where mom and baby where and why Christmas wasnt comming tonight. I just prayed and prayed and cried harder then I have ever cried before.

about midnight the alarms started going off the little boy next to us had stopped breathing and shortly there after his heart quit. His mother began to scream a scream I dont think I will ever forget as long as I live. It was like those wailing sounds you hear at indian funerals but 100 times worse. they rushed in and did everything to this poor child but he was gone. His mother just stood there when it was all over clutching his lifeless tubed body cursing god and me for my son being alive. (she came back and apoligized I told her i understood I prolly would have done the same thing) I sat there anxously watching my son labor to breath counting every heartbeat hearing ever skip, praying the alarm would not go off.

Then a miricle happened, the siezures started to slow he woke up for the first time in 5 days and Christmas morning found my son on the upside. The doctors came in and told me not to get too excited these things tend to rebound. So i waited.

January 2nd they let me out take him out of the icu and home with me. They told me he had a liesion in his right frontal lobe. they told me it could be genetic, it could be a tumor, it could be an anuerysm on surgery could tell but the odds of leaving it or performing surgery on it where bad so we eleted to wait and see.

that week I brought home a 19 month old child who could not eat without choking, who couldnt even hold his head up by himself. The doctors told me as I left to be prepared to care for him for life. That he may never be able to walk or do anything for himself. I just smiled and walked out of there with my baby.

Its five years later and he is a happy healthy 6.5 year old. He rides a bike, tries to read, and does all of the other things the children in his 1st grade class do. Admittedly he is still a little bit slower and a little bit clumsier then his playmates but he can do almost everything they can. I know in my heart that though his memory may never be good and though his speech my have problems when he is sick he will live a happy normal life.

That being said tell me why every year as December nears do I not see the beuty of the season but the horror of watching a mother lose her only child and nearly losing mine? Why cnat i let it go? I dont know. So please If you see me frowning dont take it personally. I just have a lot on my mind.

love and kisses

sulis

posted by digitalsulis @ 12/03/2000 01:10:00 AM