been a while

I dont know why I go for such a long time without writing. I guess things have been going pretty good until recently. Q is having a hard time with his seizures again. So here I am. Yesterday he was having drops just his top half and not to horribly bad or forceful. I just got done asking him how the drops were doing and he said fine I am not having any. I told him to go sit down anyhow so he did. At the table with the other two and bam then come "uhm MOM, Q just had a drop and broke his tooth" I jump up and he is already headed to the bathroom. :( His tooth is chipped pretty good. He didnt cry but was kinda upset his tooth was messed up. I dont blame him.

I am so sad that he can improve so much over a couple of months then its like his body gets use to the meds and they no longer work for him. He is probably having a good 50 or more seizures a day right now. Between the drops and absence seizures. So I guess I will be calling the doctor today and seeing if we can up the one medication we can still up. He is already on the max for the other one. Then maybe we can get a few more months of good out of it before having to up it again.

Ri is doing ok. Ups and downs since summer vacation has started. Lots of good numbers in there too tho. I just have to get the ups down a little more and she will be doing pretty good.

Caleb well he is all emotional all the time now. I hate puberty and autism!! He use to be so easy and now with all these hormones that are not easy to deal with as a typical child have him all over the place. He tried to call a old friend from Pueblo over the weekend and well he cant have a convo over the phone. He just doesnt get how. I felt so bad for him. The girl asked who he was and he looked at me and almost handed me the phone. I told him tell her who you are and he did but still :(. Its just sad he doesnt know how to talk to people. lol Let me rephrase that, he doesnt know how to have a convo. He can talk to you for a hour straight, maybe longer lol if he can just babble about what he wants to babble about.

Then onto me, I am bummed we were going to go to cali this summer and now well its just not going to happen. Nathan has not been working much at all the past two months. We were trying like all get out to save his vacation time but just couldnt do it anymore there are bills to pay. We have to live as much as I hate not being able to go life is such.........

Didnt really know

how important a credit score really was. I knew but figured it didnt really matter. It matters a lot. I hate that we make enough money to buy this house and pay our rent on time yet cant buy a house. We have to have a roof over our heads and we know we have to pay for it. We know we want to live her long term. Yet still we cant. We dont have any credit cards or CC debt. We have mostly medical bills. Dont get me wrong we are not perfect and have a few other things on there. It hasnt been easy trying to live and pay for certain things. Moving out here while it was the best thing we could have done messed us up. We lost the car cause we couldnt do both it and live. We will forever be making payments on that thing but so be it. We are at least trying to get it paid off. As with a few medical bills. We can only do so much at once tho. Sucks when you have 500000 people calling you for money because someone got sick. I cant work on paying them all off at once. It just cant happen. So we are working on a few at a time. Why dont they take that into account? Why dont they take into account that we dont want credit cards and live within our means? That should mean way more than having a CC. Why dont they look at rent history and bill payment history? These are the things that should matter because these are the things we pay to stay alive. I dont know just frustrated with how the system works but life is such.......

Do you ever

get to feeling sorry for yourself? I am having a pity party and your all invited. Ok not really but kinda. I have been thinking of my faults. A subject of school came up and I know why I dont go back. I am not a book smart person. I do not learn from books I learn from doing. I really hate it because I will never become more than I am even if I wanted to. I know this about myself I can try and work hard at school and I wont succeed in the end. I have tried before and I have tried with other things outside of school just to learn to better myself and for get it. I am not that type of person. So while in one hand I am fine with that in another it pisses me off. I know I am intelligent enough in other areas that I dont make a joke out of myself in general so that helps too. Still I cant help but feel subhuman because I dont learn the same way. I cant better myself educationally and career wise because I am not capable of learning/studying form a book. Even during class if the subject isnt 100% interesting to me my mind goes else where. I sound like the boys there but I know its just lake of interest for me. I cant write college papers and I cant take tests either. Talk to me about the testing materials and I can tell you all you need to know but put the pressure of it being a test on me and I fail. Oh well for me life is such..........

life is such and death is such

So two days ago I got some sad news. One of my cousins passed away. He was 26 years old. My heartbreaks for his immediate family. I always get nervous when my dad calls me, afraid its bad news. All to often it is. He tried to start off chipper this time but I was guarded. When he wants to chit chat its during the week early in the day. A Sunday evening call just isnt going to be good news. We have no idea as to why he passed away yet. He was found in his bed. Not that it matters why so much a life was lost no matter the reason but knowing will help bring healing. RIP Robert.

With this news brings thought to my own mortality and those closest to me. I fear for my kids lives almost daily. Riley because of her diabetes and Quinten because of his seizures. I know both could be taken from me at any moment because of their conditions. I hate having that knowledge. Yes anyone could die at any moment but this is different. They could be randomly taken because of their conditions if they didnt have these things it wouldnt be a issue. With type one diabetic (it could apply to other types but I am not sure) there is a thing called dead in bed syndrome. Its more or less like SID's but targets diabetics it doesnt matter the age. It doesnt matter how many times you wake in the middle of the night to check their blood sugars. From what I read they are not sure it is from low BG but from what I gather it most likely is. Its sudden and fast. If its going to happen its going to happen and there is nothing you can do to prevent it. There is a similar condition that could do the same to Quinten but I forgot what it was called now. There are other things with Quinten too tho even one seizure if big and bad enough could kill him. I hate knowing this but I do my best not to have this fear control me or them. For the most part it doesnt but the knowledge of it is always there. I want cures for the both of them so much but until then life is such....

World Autism day

Turning blue for this one. 1 in 110 kids are being diagnosed with autism. I often wonder if its natures way of telling us to slow down. Natures way of creating a new breed of people. I know in my home its 2 out of 3. I am grateful tho that the boys are higher functioning. They can talk to me and communicate their needs. At one point they didnt do so well with that. I had no idea at the time it was autism tho. I thought they were being lazy or stopped talking because their baby sister was born. Must not forget they are just doing twin talk. Yeah not so much the switch that was flipped turning our lives around was and is autism. We didnt find out for many years after that this is what it was tho. Anyhow I made them use their words even if I couldnt understand what they were saying. I made them work for what they wanted. I cried many times not knowing what they were asking for but knowing it was something. Once I took everything out of the cupboards food drinks and asked this? Still the same babble was repeated. Finally I open the cupboard Bug was looking at and in there was the chocolate. I pulled it out and got the babble with a smile not frustration. The babble didnt even come close to the word chocolate. I sat there with him making him look at my mouth as I said chocolate. He wanted it bad and we got closer to the sounds in the word chocolate. Milk was another word that didnt come out close to the sounds in milk. My favorite word tho was now&later it came out alligators lol go figure they cant say milk but can say alligator even if it was meant to be now & later. I guess you can tell they had a sweet tooth. That was around age 3-4. Once they started speech therapy at the public school at age 5 they improved greatly. They still have problems communicating when they are upset often resulting in someone getting hit but its better than what it was. I figured out the boys were autistic around age 8 when we got a computer. I was and am still floored by it. I remember reading about it and just saying this is my boys. This is them all the way. I tried to get a dx for them but doctors suck and the nuero we went to see was more interested in telling me their stimulant meds for the adhd doesnt make seizures worse and wanted them back on them. I know and knew without a doubt they did make them worse. The guy was a jerk and why I dislike doctors he doesnt listen to the parent and forgets he is working for US not the other way around. So we moved and I home schooled the kids (not recommending this) for the first year we lived here. By the end of that school year I knew I had to get them back into public school here. It was to late in the school year to start their testing but by October we got the educational dx of autism. The school was amazed at the progress I made with the boys on my own with only speech therapy being given to them from a outside source. I told them "Autism is not a excuse, its the reason" and its how I always felt even when I didnt know what "it" was. So I worked hard with the boys getting them to learn and work for what they wanted. I made them say please and thank you or they didnt get or got what was given taken away. They sat in time out for 5 years for writing on the walls and then one day they got it. I didnt give up on them. They still need to learn to follow the rules even if it takes them longer and we need different methods to teach them to get it. The boys are high enough on the functioning scale that one day they will have to go out in the world and be able to function in it. I dont want them going out there and thinking oh I have autism so I can get away with this. No you cant and if you do you will end up with your butt in jail. I dont want that for them. I am blunt and honest with them and in turn they are blunt and honest with me. Heck Bug tells on himself 98% of the time lol. I remember the day he tried to lie to me the first time. I was happy but he is a horrible liar. I called him on it so he knows he cant get away with it but still I am glad he tries like any other kid. I went and got them their medical dx last year. I brought them to some lady cant remember what her tittle is at this point and she said within the first minute of them being their she knew they were autistic and as with everyone else wanted to know how it was missed. I wonder myself at times but know how without going into it here it just was. She also said in her report which she normally doesnt give to parents that I have a natural ability to handle these two boys. I know what works for them and what doesnt and when I dont know I figure it out. That isnt me bragging that is me not feeling like a failure as a mom. I got a lot of that when someone finally said yes its autism but her telling me that wasnt just that I wasnt a failure as a mom but a good mom for my kids. I dont always do things right nobody does but I know in the end I as their mother am doing them more good than harm. That means a lot to me. I know this blog is all over the place but life is such......

All by myself

Ok not yet cause the kids are still sleeping but I will be. Today the hubby normally has off but he has a hunters safety class today and tomorrow. My brother in law and sister in law are going to it as well. I am dropping the kids off at school going shopping and then I will be up here all by myself for a few hours. Not that I mind in the physical sense. Its more that I am normally the one being left behind. Not that I have any interest in a hunters safety class either. Its also not that I never get to do what I want because I do. Its more the jealousy of the care free life others have with their kids. I am not green with jealousy or anything either. I just wish I could drop my kids off with grandma for the day and join the others. If we want to do something with the 4 of us adults it just cant happen. Either the hubby or I have to stay here. My brother and sister in-law both know how to take care of the kids at the basic levels. I am comfortable leaving them in their care but they are the only ones. My sister in law even knows when Ri is low by looking at her now. They have not experienced a grand mal from Quinten yet and I hope they never have too but I am confident they can handle it. Still there will be no the 4 of us going and doing something together. There will always be the odd man out and typically it is me. Partly because I dont have the same interests as them and I rather the hubby get out and enjoy the things the others do. I dont have the same need to get out of the house and do things as he does. I am content in my home with the kids and laptop lol. Would I love typical kids that liked to go camping and fishing? Sure its stuff I would love to do. Would I love for them to want to go on a walk with me? Very much so but any of those is like asking them to pull their own teeth out. Wait not a good example cause the boys would try that so they could get money from the tooth fairy. Its like asking them too sit still for 10 min. Its just something they can not do. I have accepted that and even in my round about way of complaining I am not. Like I said I am ok with them not wanting to do any of those things even tho I would like them to be able too. For me and for them, for our family. It would be great to just be able to get up and go as a family and do things or be able to hire a baby sitter to watch them. Heck to be able to leave them home alone. The boys will be 12 this year and Ri 11. I started babysitting at 11. I cant and they cant do that. It boggles my mind at how different they are from me at the same ages. I am glad on many many levels lol I was not always a good girl. Still it would be nice to have that more care free life others do with their kids its not in the cards for us and life is such.............

P.S. I am sure by now you are getting annoyed with the life is such at the end of each blog as am I. However I started it so now I feel like I have to add it at the end so deal with it ;)

Another day

So last night was better than the night before. Except I woke up at 4a.m. and couldnt go back to sleep. Now here it is noon and I am dead tired and with good reason. On the way to school I realize I forgot Riley's insulin kit. I was to far down the hill to turn around so I decide to just drop them off then come back for it. Its about a half hour drive one way. Before coming back I stop at walmart and grab what I need. When I get back up here I let the dog out of her crate and there is now blood on my door, wall and laptop. Her tail is bleeding for some reason. Probably because she is a black lab and her tail never stops moving. I am sure she hit it on something to cause it to bleed. So I take them outside they do what dogs do and I locked the one dog back up. Back to town I go. I get to the school drop it off and decide to have them call up to Q's room to see how he was doing. He was having a bunch of drops this morning and sure enough he still was. He had 9 drops while his aide took him to the library. So I bring him back home with me. Some days I think his meds might be helping other days I think they are making them worse. In the end I guess they are not really doing anything for him at all. I believe this is the 8th seizure medication we have had him on might be 9th. After so many I am starting to lose count but I have a list.

So that was the first half of my day. Now Q is laying next to me in my bed. He likes to watch tv in here with me when he is home from school. Maybe we can both take a nap before I have to wake up and watch my nephews while my sister in law goes and picks up the other kids. Cross your fingers for me I need it 9:00p.m. wont come fast enough for me today. Again life is such...

On the floor again

Im sleeping on the floor again (to the tune of on the road again) because Q had a bad dream last night. I hear knocking on the Q monitor (he isnt a baby so it not a baby monitor) and get up its 2 a.m. I go to his room and he is scared because he had another bad dream. So I walk him back to my room he gets my spot in the bed next to dad. He has to sleep because of his seizures a bad nights sleep means a bad day of seizures. The poor kids has enough of them on a full nights sleep. So I grab my pillow and a blanket and crash back out on the floor. Then the alarm goes off at 3a.m. for Dad to get up. It disturbs Q just enough that I can have him scoot over into dads spot so I can reclaim mine. Out I go until I get that kiss goodbye then back out. To bad I had to get up at 11:45 p.m. as well to check Ri's blood sugars. Then 4:36 a.m. comes around and I am back up. I give Q his meds then so they have enough time to get into his system before he has to wake up. He just scared the crud out of me with a "mom I gotta go to the bathroom" so to the bathroom we went. Yes I go to the bathroom with my almost 13 yo son. He has drop seizuers and they are worse in the mornings he will be standing one second and on the floor the next. So I stand behind him with one arm under his arm and my hand across his chest braced and ready to catch him if I need too. Which I have caught him many times saving his face from being beaten by the porcelain thrown. Then I walk him back to my bed and hear him having a few seizures. His breathing now is going into his sleep breathing thankfully. All in a nights work.

Now seeing that its 6a.m. I get to start getting myself ready for the day. Put my face on find some clothes ect. At 7 comes the mad dash. Waking three kids up have them eat after Ri checks her blood sugars and I do the mat to figure out how much insulin she needs. Then help Q get dressed because of the drops again I stand there while he stand to take off and pull up his undies and pants. Then I leave him to do the rest. Then pack up Ri's lunch figure out her carbs and write how much insulin she will need on the box. Make sure she has her tester purse packed with stuff to treat lows and that she has enough strips to get her through the day. Then get her insulin kit into my purse. Brush all three kids hair and out the door we go by 7:35. Get Q in the car then grab his wheel chair. With how many drops he has its just safer and easier for him to be in it. Anyhow I get to get it in the back of my suburban which is not easy its a older chair and very heavy. Oh well I can do it at least. Then off we go to school. Where he will have a second breakfast both the one here and there are small so it really only equals one breakfast but they dont know that lol. If he is having a bunch of drops I will stay with him and feed him so he doesnt make a mess of himself. This both makes me smile and cry all at once. Its hard to feed him at 13 and not get sad but he is so silly and cute when I do he makes me smile. Time to hit post and get myself in gear cause life is such......

Life is such

I started this blog years ago. I forgot about it. I started it as a place I could come to and hide who I am. I am done with that. No secret identities I am who I am. I am a wife for almost 14 years now and a mother for almost 13 years now. I have come a long way in the past couple of years and still have a ways to go. Which I don't mind always growing, changing and bettering myself never to be stagnant is my goal.

Now onto what most of my blogs will be about my kids. My boys are 12 yo twins they are high functioning autistic and epileptic. There is other stuff in there too but those are the major things. Q as he likes to be called has 3 types of seizures absence, drops and grand mals. None of them are control despite countless medications. Then there is Bug he only has absence seizures. My daughter Ri was Dxed with type one diabetes in 12/09 she was my "normal" child up until then and that took the life out of me for a while. It was very hard to adjust to having three kids with conditions that cant be cured just treated. At the time of Ri's dx Q still only had the absence seizures. The Gm's started about a month after her dx. Then the drops I believe were during the summer. So I didnt have time t adjust to one thing when another started.

I love my kids and wouldnt trade them for anything in the world. It gets hard sometimes tho. I need to vent and cry and whine here. I need to get the heartache out so it doesnt become toxic within me. I can not afford to hang onto it. I need to get it out and ride the wave back to shore instead of letting the waves push me under and drag me out to sea. This blog will go from heart breaking to hysterical and more than likely all in one post. Its all good tho cause such is life....