I have thought a lot about how to make this post. My main concern was that I always say too much and I fear if its too long no one will read it. Yet if its too short I wont make the point I wanted to. So I just decided to just write. (This is LONG! I apologize)
I want to tell you about myself and family first. None of this should matter but lets face it, we are human and not Gods, so it does. As far as I have been told and as far as I can remember I was always sick. As life went on I have been diagnosed with scoliosis, crohns and colitis, fibromyalgia, arthritis, asthma and something tachycardia. I am sure I am missing something
As of today I have had my entire colon removed and now have an ileostomy for the last 4 months or so. For those that never heard of it I wear a bag on my stomach that collect waste. Yes…crap, poop, feces or whatever you want to call it. I have taken lots of medications over the years which have exasperated some of my other ailments. My teeth just started falling out when I started imuran for my crohns. I have 1 molar thats cracked and rest gone. My bones all suffered from 15 years of steroids. Things like that. On my last heart echo they suspect they have finally found a name for my heart defect but I cant find the paper just now. Its where you should have 3 arteries or something but I have 2. I already had an ablasion on it 15 years ago maybe. Still my heart rate always high
Again this has been going on my entire life. I missed a lot of school as a child still I managed to skip 2 grades. I did attend college but lack of money prevented me from continuing. My health was so bad I found it hard to work even part time. So I started looking for answers at age 20. The tests were so expensive I finally gave in and took a job at the phone company for the medical benefits. I didnt want to as this was no career to me but a job. I still felt if I found out what was wrong I could have a career. I could be the psychologist and writer I always wanted to be.
Of the 6 years I worked, I spent about 3.5 out sick and on disability. Finally at the age of 31 I was fired. I was told my health problems were too great, I couldnt even work part time, they let me have every chance they could and if I came back and got sick again I would get fired without disability. So I left. That was 2 days before Christmas I think. So every Christmas since has been really hard since then. Mentally as well as financially
My husband and I now had been married about 8 years and had 1 child. We wanted a family but I was raised, and life had taught me, to try my best to do everything right according to the law and God. So much so that I didnt even believe in sex before marriage. I dated at least 100 men I would think. I slept with only one. That man is my husband. I would not bring other children until I was well enough to care for them and could afford them. I did not think this would go as it did
We ended up buying a home because I had saved for it and each year I was sick. I knew that if we didnt get one now we never would. So instead of the 150,000 home I thought I would have in a great area, we ended up in a 80,000 home in a not so great area. I thought once I was well and could work again we would move on and continue our plans. Maybe 2 years at most. So we thought while I was off, we might as well complete our family. We had 2 more children which turned out was just too much on my body. My husband lost his job of 10 years because he had to stay at home to care for us all.
Now I had a home I could no longer care for, 3 kids which I could barely physically care for and now we were financially in a place I never knew existed. Well not if you did everything right. Not if you lived your life “right”. Now if you planned and used common sense and worked for everything you had. I had had a 401k, stocks and bonds and all that once. I was not familiar with this place I was in. It was worse than the childhood I could remember and my mom was a single parent with 6 kids. This was the start of what I thought was the end
As years went on Anthony, my husband, did get another job. He had to take a low paying job with flexible hours so that he could still care for me and the children. He went to school and studied to be a chef. He went from cooking meals that I couldnt even pronounce to being a cook in a kitchen yet again. If he took a real chef job that meant night work and I was not getting any better but worse. We even had to leave our home before we sold it. The area had gotten so bad that our kids couldnt even go in the backyard to play. The kids took it over like a park. There were little kids as young as 5 years old that would call us all sorts of curse words when we told them to get out our yard. One night there was a prostitute that got raped right under the window where my bed was. The police came and said it happens often. They didnt take a report and then said they had another call and left. That is the same thing they said when our home had gotten broken into. So we left
Now today, we are in the same situation. We have had our last child and he is now 6 years old. I felt we might as well since I was getting so ill and it was our last chance. I thought I would have a remission as I did with the other pregnancies, well of sorts anyway. It was much worse than anything I could imagine. This child had to be taken 4-6 weeks early because I could no longer carry him. I was bleeding rectally so much and could no longer hold my bowels to get to the bathroom. That was the good part
In addiction to my illnesses, my children were born with their own. Anthony had only bronchitis and now he has an onslaught of illnesses just this past year. The worse part being an enlarged thyroid. He pays for insurance and so do I. His deductables are 7, 35 and 50. Mine are now 2, 6 and I forget the other. They only just fixed this this year. All these years they kept arguing with me because they still had me as working. So we had to decide what medicines we could afford. I believe this is why I got so much worse. I cant believe to calculate the costs of my medicines without insurance.
In addiction we have lots of medicines which are now over the counter. Those run a great deal. On top of that, Taylor and Terry both have a defect with their feet that causes them great pain. We tried braces with Taylor, which we had to pay for, but they did not work. We never got the money to try with Terry. Every day they come home from school in pain and can do nothing but sit. I watched Taylor go from riding his bike daily and wanting to play soccer to gaining 50lbs and a video game fanatic just as the orthopedist said would happen. The older he gets the more pain he will have. The more pain he has the less he will be able to get around. So the more weight he gains. Now its happening to Terry
Thats the other thing. Everyone just assumes we spend our money on McDonalds and the kids are overweight because of it. Then they dont want to even donate food as they feel we are less deserving then dogs to treat our kids like that. Our oldest has a weight issue that his doctors knew about when he was young and so does he. He really is addicted to food since before he ate solids. Tyler has only gained once he couldnt go out and play. Then his asthma got so bad when we moved here cause we couldnt afford all his medicines. Taylor didnt gain until his feet got too painful and now Terry is doing the same. They eat the garbage lunches at school when they dont make them sick and we cant afford real food anymore at home. We can only afford 2 pieces of fruit each a week if we are lucky, not a day. Although we are human and we will willingly eat noodles 3 days for lunch in order to order a pizza or go to the 3 movies across town
When I met John Ardis and found out about how I THOUGHT the Samaritan Network worked I felt I would never see him again. He said that they were not set up for anything ongoing just as the rest of the country had told me. We make too much for any county, state or federal assistance and too little to live. We can only survive just barely. I even googled the network once and saw an article in the Beacon and some other paper. He wrote me about a woman whos son had been shot and what they did for her. I then gave 20 myself. I thought thats what it meant. If a lot of ppl gave a little of something it would help another. I dont know what I didnt pay that month to give that money but I know I could not give again. I did post the webpage on my facebook and looked for a facebook link to help get others involved and I figured that was my way of giving
John (I feel I have cried enough tears to him that I can now call him by his first name haha) emailed me again and asked what he could do or how we were doing. I dont even think I replied. I felt he was such a nice man but as I told him before, we are in quicksand with no way out. I could not imagine anything that would help. The only thing would be for someone to get better and lessen the medical costs, but every illness is incurable. Or for hubby to get a better job and we covered that already. I guess a 3rd option would be to go move to a home in a very bad part of town but even when I looked there the rent was just 300 less than here. Our mortgage at our house we left in Maywood was even 300 more than we pay here I think.
So when he emailed me again about Christmas I started to reply and then I deleted it all. If I told him what was really going on it would sound like I was lying. Anthonys thyroid is still growing and now bothering him to swallow. Yet we cant get a biopsy til we make arrangements to pay for his ultrasound. To get that ultrasound we had to make arrangements on the balance of his cat scan and that was over 500. We also had to pay for his and Tyler emergency room visits, the 75 copay for each, when they had their asthma attacks. So to date his surgery is not scheduled
Tyler still needs an MRI. Cancer runs in my family, my brother currently has brain cancer even. Tyler has had trouble with balance and more since birth and they are again checking him. If not cancer it could be he has autism and we dont have money to pay for the therapy and classes he will need and the family will need to learn how to deal with him
Its just on and on and on. Its not one thing or even 10 that I can think anyone can do to help. Because each day its something else. We start out each month something like -600 and go from there. So I dont get as many as my medicines as I feel I can do without. Those that we take the same I give to them as I get it cheaper. We dont have a car payment or anything else. We have internet and satellite tv. So there was nothing I felt he could do for us. Still he asked again. Like if we needed toys and food. Now this was something we needed but I didnt want him to help us if someone else needed it. I had bought my kids a gift in October and they knew they would get 1 gift and 50 from their Dad bonus. Oh yeah, did I mention all that was spent on the crappy car?
I cant say exactly how it went but I know it was a lot of screaming and crying involved. That was from me! First he said that they had money to offer that was raised already. It was not going to hurt another person and I just screamed with joy. Then he said he would just tell the group about us but he could not promise anything. I knew this now as he had explained how the network actually worked. He even said that one day he might call upon the boys to help move someone to a new home. I really felt excited because this made us part of it. When I thought we could do nothing. I felt on top of the world
It seems there was a lot of phone calls after that. He would call and say someone gave headphones for the oldest. They had a helicopter for the baby and so on. It was just on and on and so very fast. I could not think at all. I really didnt believe it. He said he would drop off some gift cards and decorations for our tree. (darn the tree story was good but my fingers hurt. Another time maybe haha). Anthony was home and they had never met so I didnt even try to get down the stairs. We already had to go across town to a doctors appointment and then to walmart to try to get something for them. I felt so bad about them having nothing. Fischer school had extra gift certificates and had given us some for them already. I used those on food. I picked up the new bopit like 4x and put it back. I told her I was going to get that toy now. When we left we didnt go through the cards. I just knew we had to go.
When we go to the store we ended up spending more on food than I thought. Then we were all sick again and had to get more cold pills and all that. Nothing was going as planned. I did get bopit though. I knew that John said he was bringing dinner and I knew we were ok for the weekend. Then one of the gift cards wouldnt work and we had to pay for it. When we got home we were -29 in the bank. I still didnt care. I knew we were ok
The best part of all this was that we were celebrating Christmas on Christmas eve. Anthony usually has to work on holidays unless they fall on his days off. This year he had to work so we had a family meeting. Tyler and Taylor, now 12 and 13, said they knew there was no santa. They did know that the school helped us a lot and they knew we were not having a traditional dinner because it costs too much. The baby was just 6 so we agreed to just pretend Christmas Eve was actually Christmas day. Usually the boys had to wait until their dad got home to open anything. Even if it was 8p that night. So they knew the feeling and didnt want to do that to Terry. Everything was going so great!
Our Christmas morning came and the boys let us sleep an extra hour and played xbox. When we finally got down stairs they waited and took turns opening things as they usually did so we could take pictures of them. For some reason my camera was just dying and wouldnt work. So I told them to just open them and anthony filmed it on his cell phone. We were all shocked. I dont even think thats a good word for it
The xbox games they got seem as though they were picked out just for them. One of the games was one that Tyler had wanted so badly and already planned on using any Christmas and birthday money for it. There were games for all of them. Then there were books. I cant believe the books. Right now its 3a and AJ is reading one. He hasnt been able to put them down. Terry is just 6 but he reads more on a 2nd or 3rd grade level than 1st. He doesnt like baby books and right now he has his entire pile of books in my room keeping safe until we find a spot haha
Its like it wasnt a lot of thigs or things like their friends got. Their friends all had smart phones and tablets. My kids had a mini tablet which I got on groupon for 49 and shared a phone with aj that I just bought as I had to get my turned off to save money. They are normally grateful kids to start with and understand they are not well off as others. This year they felt no different at all. The things they got were what they would have picked out and the best part is they felt it wasnt charity. They didnt feel like the poor kids that had to do tricks or something for a book. John never made them feel like that at all.
I always tell my kids there are angels. They might ask how did we get food of who helped us buy them a gift or where did something come from. I always tell them its angels. The world is full of them. We didnt even eat the dinner Christmas Eve as we were so exhausted. That day, which was our Christmas, we ate, we played, we hugged, we smiled and we were happy. All day. I just cant put it into words
I wrote this mainly for those of the Samaritan Network. So that you might know that you helped a family beyond anything maybe you thought you would. No we are not in a shelter, we dont have a son with MS or any of those stories that appear on the news. We are a true family. We married for love when I was 23, I was not pregnant, I never had an abortion, we had our first son at 27 after he was long planned and prayed for, we saved twice for a house before we actually bought one, we had 3 cars and all that. We worked for what we had, we did not live outside our means and had no intention of ever being a burden on anyone else or raising kids in poverty. Life just happens sometimes. I didnt even take a tylenol with any of the pregnancies even though I was very sick. I only took prednisone with Terry as it was life or death and children get prednisone safely. He has to take it occasionally now for his asthma even. In our case its all medical, no solution and nothing we could have done to prevent it, nothing we did to make it worse and nothing we can truly do to make it better other than be able to afford all of our medications
From January 1 2011 until April I went to sleep wishing I would die and woke up cursing God because I didnt. I went from believing that God made miracles happen, having had more than a few in my life before, to questioning the very existence of a God. Of any God at all. My prayers were not the usual world peace and joy which they had been all my life. They were now death chants. So often and so loud that I no longer cared if my children heard. You can read past blogs to get an idea of what life was like. It was 20x worse as I had even stopped blogging. I was too sick and hated the world too bad to care. I no longer didnt try to take my own life because I thought I would go to hell. I didnt because all I had were pills and I puked all day. My thought is God, if was real, hated me so much that he would have me live but then brain dead if I tried.
I was told a few times that the reason I have trouble understanding fighting and evil and why no one helps another is because I dont know anyone like myself. I have bought food for people I never met in real life but only online. I have paid peoples bills. I have sat up on the phone with them all night and cried. I have spent hours reading their posts and praying as I was in too much pain to sit and type back to them. There has never been a year, until we moved here, that someone hasnt lived with us and never have they paid a dime. If I saw that I could help someone I just did. I didnt have to be asked, begged or thanked. Most times I forget it even happened until the person tells me years later. Thats not why I did it. I loved people more than you can know. That was all gone. Then John came. Then Samaritan Network came
Tonight I was giving Terry his medications. We are all still sick, he was born with rsv and now that translates to very bad asthma. While we were waiting I was closing out my computer to sleep. An email came in and he told me to look at the pictures. Then we went to the email. It was a person I came across on youtube while I was searching for videos to show how to change my ileostomy bag and care for my stoma. It was a girl very sick and in the hospital. She was asking for prayers. Terry started to cry because her colon had came through and burst as mine almost did. She had the g-tube down her throat as I had. He said she must be in great pain as I was. He wanted to pray. I took his hand and I told him how we pray. How I pray. When we were done he said he remembered that we used to pray. He remembers when I used to tell him stories about the bible. When I was always talking about God and when my bible was by my bed not in a cabinet. We both cried.
I never usually accept anything from anyone. I feel they can always give to someone that needs it more. Mostly I feel that it wont help me so why take from another. I think this is the first time someone just didnt say “ok, whatever you say”. Someone kept asking. Someone kept trying. Someone kept caring
I believe in God not because I didnt die yet again. I dont believe in God for any other reason other than the people I have seen and met this year. Those on facebook that prayed for my premature niece without hesitation. Those that prayed for me, and even called me from other countries because they knew my absence and hollow words when I was around was my death cry. I can now say that I met people like me. I met people that love others because God says so. That help others because they can not because they are commanded.
This is the longest post I can think that I have written in my life, I still didnt cover what I wanted to but my hands hurt so bad I can say no more. (I know you are happy about that hahaha) I do know there is a God. He is good. He is love. Its ok for me to keep loving as I and I know I am not alone. I am not stupid. Or naive. I am a good samaritan and I know that there are many others out there. Thank you http://samaritannetwork.com/sn1/
(will add pic and video links tomorrow)
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