My Sister

Posted by Anonymous.

The world as I know it ended on a cold December night in 2006. At 10:15 pm. my baby sister, who I had watched for over ten years fight the nightmare that is Leukemia, died. It was like my own death was taking place; I shut down, I became withdrawn, severely depressed and angry. It wasn't just her death that haunted me, it was the way she died, full of pain and anger, not wanting to accept her fate. It was the cruelest experience of my life.

I had spent the months leading up to her death in denial. In all the years that she had Leukemia, I never once thought that she would die. I always knew that she could die at any moment, but i never really believed that she would. I know it was naive of me to be so optimistic, but in those ten years that she battled with the cancer, I thought my sister to be invincible - countless surgeries and infected ports, serious life-threatening circumstances never stopped her from fighting. Even when an irresponsible doctor botched a surgery and left her fighting for her life in what would be months of recuperating, she never lost hope, but she never fully recuperated either. She died of complications due to that surgery and from the cancer.

She was my everything. I lived and breathed for her and for all of a sudden for my whole world to be torn apart was more than I could bear. For months after she died, I would wake up in the middle of the night and tell myself that she was still in the hospital waiting for me to go see her. When she came home to die after they told her she only had four months to live, if that, she was in hospice. They had a nurse that would come to the house to make sure she was comfortable and wasn't in pain, but it didn't matter that they gave her medicine - she died in pain, it was never painless.

When she came home from the hospital to die, she was angry to say the least. She would cry and scream, she didn't understand why she had to die, why at sixteen her time was up. She who had never had the chance to have a real life because of her illness, who hung out with my friends who loved her because the kids at school didn't want to be friends with the girl who had cancer. Even though she was two years younger than me, she always seemed older. Maybe it was the fact that she never got to have a normal childhood that made her seem wise beyond her years. She didn't have time to think of petty things that other kids at her age thought of, not when she was constantly trying to stay alive.

I took a leave of absence from work to be with her. I withdrew from all my classes at college. I tried to keep going because I knew she would be proud of me. She looked up to me so much, and the last thing I wanted to do was disappoint her, but I couldn't stand to be away from her even for short periods of time. I always felt that if I left her, that she would die, and I would never be able to say goodbye or forgive myself for not being there. I became an insomniac; I was too worried and scared to go to sleep, I never knew if I was seeing her for the last time. It was torture to see her die slowly everyday. I couldn't stand to see it, but, at the same time, I couldn't stand to look away. Time was so precious, every moment i spent with her was precious.

She started to get worse - her body started shutting down, her organs began to die, she could no longer sit up in bed by herself. My mother and I would help her to the restroom. Years of steroids for pain had left her first using a walker and later in a wheelchair. If she would have lived, she would have needed a hip and both knees replaced. Three days before she died, a priest came to read her her last rites. We had to hold her up so that he could bless her. She was deteriorating so fast, the day before she had stopped talking. The last thing she ever said was my name and till this day, I don't know what it was that she wanted to tell me.

I know that my sister loved me, and I loved her more than anything, but losing her is something I will never be ok with. I've spent the last 3 1/2 years being depressed and unable to let go of the one person who truly understood me and who I couldn't live without. After her death, I became in a way a zombie. I stopped going out, I didn't want to go back to school, I kept working hoping it would take my mind off the pain, but it never did. I went back to work a month after she died, but I wasn't ready to go back. Everyone I knew was just sorry for me, but I didn't care, I just wanted her back. I just couldn't live in a world where my little sister didn't exist.

The worst part was dreaming of her every night. It would always be the same dream: me hanging out with her doing regular stuff like shopping or watching tv etc., normal things. And, to me, it was like she never died becuz I believed her to be alive. To everyone else, she was dead, but not to me -- she was alive in my dreams and how I wished that my dreams were reality. It wasn't until years later that I had a dream of her telling me that she was sorry that she had died and that she was ok that I realized that I had stopped living. I had become so depressed that I didn't know how to be me anymore. It was this dream that made me realize that all this time that I had spent dreaming of her, I was, in a way, preventing her from letting go, and I knew that by her telling me those things in my dream that she would never be able to if I didn't let go. As much as it pained me to not think about her everyday and miss her, I told myself that it was the right thing to do. The last thing I wanted to do was hurt her in death, and I couldn't allow my depression to get in the way of her being happy and at rest.

It was complete torture those four months after the doctors told us she wouldn't be here for christmas, and they were right. She died five days before xmas. It was the worst day of my life. After ten years of fighting, you'd think she would have won. The hardest part of losing her was not knowing if she was ok, where she was, whether she was still in pain. As someone who has never been religious, albeit somewhat spiritual, it was very hard to believe that she was ok. How could she be ok if she was dead?? There had to be some sort of explanation!! Why was she taken from me when she who was always so devout in her faith yet had suffered beyond her wildest dreams, how is it that god had allowed this to happen????

I don't think I'll ever understand why she had to die. There's no reason or explanation that's ever going to be good enough. I've come to terms with it in my own way. I'm glad that for 16 years I lived and got to be in the presence of an angel, and, even though she is gone, she will always be with me. I deal with my depression every single day, but I am no longer crippled by it. I take it for what it is, and I no longer feel like a zombie. For the first time in a long time, I feel like me again and that's something I will continue to work on everyday. I've been back to school for a year now. I'm going to be a nurse someday so that I can help all those children who suffer like my sister did.

To lose someone you love, whether a sister/mother/father/brother... is extremely hard, but I found that letting go is harder to do, and until recently, I never felt strong enough to really talk about her without breaking down. Hopefully this will inspire if not help others to do the same with their loved ones. It sounds very cliche, but life goes on whether you want it to or not, and what better way to honor the person that you've lost than by allowing yourself to move on as well.

I love you my vito.

Santa Doesn't Come Anymore

Posted by Anonymous.

Christmas is just a little sadder now. Ever since I can remember, Santa came to visit on Christmas Eve at some point after we’d fallen asleep. We’d wake up to a wonderful, magical Christmas morning. I don’t know how old I was when I realized who Santa really was, but that didn’t stop me from believing in Santa. Not at all. Santa was still just as real, only the embodiment of Santa changed. Santa still came every Christmas Eve. This year I’m 37. Santa stopped coming for me a couple years ago. He sort of came the Christmas before last, but last year… Last year he faded away completely. You see, my mom was the best Santa around. She made every Christmas absolutely magical. It didn’t matter that her kids knew Santa wasn’t “real”. Santa kept coming, year after year. Even after we’d left home. Even after I’d married. Even after I had kids of my own. Santa still came for me.

The Santa part of my mom was taken by an insidious evil we call Alzheimer’s. My mom is still here. She’s still my mom and she’s, mostly, the woman she used to be. Mostly. The sending cards part of my mom has been snuffed out. The going out and picking out gifts for loved ones part of my mom has been extinguished. I can only imagine that Santa is in there somewhere. Trapped. Longing to get out and be free and play the role again. But Santa can’t.

At first I thought it was because the focus had shifted to the kids – at least that’s what I wanted to believe. But my kids are six and three. Santa still came for me when they were littler. I realized it wasn’t a decision to retire Santa. Santa was forced out by something much stronger. And with each passing Christmas it becomes more and more apparent that this malicious disease is taking more and more of my mom. Things are different. I wonder if the tree will get put up this year; if she’ll think of it. I wonder if she’ll pull out all the ornaments from years gone by and lovingly hang them from the tree. Or will my dad have to be the one this year to think of putting the tree up? I don’t think he quite realized until now how much my mom really did when it came to occasions. Birthdays, anniversaries, weddings. She was the gift-getter. She loved it. Looking for the perfect gift. The look on the faces of the recipients. Now? The task either falls on him – or gets forgotten completely.

I know this post is very sad, and it seems that Christmas has a dark cloud over it now, but I am thankful I still have my mom. And, of course, there are my kids. Santa lives on in the eyes of my children. The wonderment in their eyes is just amazing and I hope I can keep Santa alive for them, even though he’ll change form in their minds through the years, just as my mom did for so long for us.

The Fight Against Jim

Posted by Denise Kingsley (Pongratz).

I dropped the ball again.

I married very young. I was in love. In a few short years after the birth of two children, I knew I had outgrown him. I knew I would have nothing if I stayed with him. He was unfaithful to boot. When I decided to leave he became obsessed with keeping me. It took me 3 years to get my divorce. I am sure that this part of my story is common.

I dropped the ball by not pursuing him for child support. The laws were different when we divorced in 84. If he was not working, which he conveniently did not, no support was ordered. Once I found out he was working, I started the legal ball rolling only to be buried in paperwork and depositions. I had to make the decision whether to continue the fight,or provide for my children. I chose to stop. I could not afford both.

A second marriage required a move to another state. Instead of trying to prevent the move, he brought me papers that stated he would never have to pay anything. I did not sign them.

I tried again a few years later to get him to provide for his children, Once again he made it impossible and the cost too great for me. I stopped again.

The children are now 30 and 32. I recently found out my ex, their father, was in the hospital near death. He had virtually no contact with the kids and went many years between any communication. He almost died. COPD and pneumonia. He recovered, but does not have much of a life.

A new fire rose in me. How could this man die and never leave anything to his children? Nothing. He taught them nothing, gave them nothing but the pain of being abandoned. For the first time in my life I am financially able to fight him. Lawyer, court, judgment. He did not bother to fight it. He thought nothing would happen after all these years. I won a judgment that is almost impossible to collect. I spin my wheels and make myself physically ill trying to get him to do the right thing. He has once again hired an attorney instead of giving anything to his children. Not even a token. No mention in a will. Nothing. He is trying to get the judgement against him vacated for health reasons. He is and has always been sneaky. I am sure his has been hiding everything he can. I spoke to my attorney and all I can do is to throw more money into the fight. I am at the same position I have always been. Do I fight? How much will THIS fight cost? Is it the money or the principle? I know in my heart it is the principle. I want him to own it! I want him to pay for the pain he caused but I don't know how to do it.

Is it right to let it go and drop the ball again? Does a sick man get a pass now just because he is sick? The children do not want to see him now. Everything he has done since his hospitalization has proven to the kids that he does not care... never has. Actions speak louder than words.

I need to find inner peace. Will that peace come from letting it go and moving on, or should I spend the money and try everything I can to continue the fight?

Waiting On My Thirty Pieces Of Silver

Posted by Leslie, Daniel's Mom.

Ante-script: My mother has early onset dementia. She is not yet 70 years old and her deterioration is fast, quiet, harsh, and ceaseless. Suicide is very rare among patients with this type of dementia (mostly because they haven’t the ability to plan and process the act) but we have a strong family history—her own father, in fact. Today my father took a gun out of her hand but I can't speak to how or why it was there. I am not there. I can’t be there. I am far away with three children—one is Daniel, my little piece of God. My sister is there, but for reasons never given, she wants nothing from me—I “breeze in” for visits. (Anybody else “breeze” anywhere with a special needs kid? Did I miss that workshop?) Anyway, this piece is almost a year old (2/09)—she visited us back then with the fully disclosed understanding that I would submit my observations to her doctor. Truly, as much as mothers watch our babies change in a year, so has this daughter watched her mother change, only in a backwards dying way. I will need to write on this again, so background information seemed only fair enough to offer.

I submitted my super (and completely un-) secret documentation of mom's visit to her doctor as directed. Or, rather, I emailed it to my dad and he submitted it because I just couldn't send all that crap directly to a stranger.

You see, I told on my mother. Laid out her secrets, one by one, day by day. I kissed her on both cheeks and now they will surely come for her.

It would appear that my mother is only able to function as a result of my father's constant vigilance and well-honed sense of I-Know-What's-Rightiness. It would appear that way because without my father, she is just simply un-able. Unable to what? Well, it's all right there in the document, and frankly, you should probably be on the lookout for a copy because my father is forwarding it around like one of those 'This is Cute' emails. And this, this horrid thing that is scraping my mother away from the inside out, is not cute at all.
She's been gone a week today and my anger is becoming soft and grief-y. Well, you would be angry too (maybe) if you had to hide food and tape containers shut and guard your kids' snacks and wonder why the autistic kid keeps bringing his empty snack bowl back for more crackers(vocab: perseverity/eating disorder--elderly onset) and double check the doors and gates left open and listen to endless lies (vocab: confabulation) and accusations that your Daniel stole her watch. And you would especially maybe be mad if you, somewhere in the back of your head, thought that When Mama Comes It Will Get Better. It was not better. It was her making kids cry at the twins’ birthday party because she wanted to Huuuuuuuug them. Like a very scary Grandma Clown. It was her ignoring her beautiful grandchildren unless they were packing graham crackers (vocab: apathy). It was her describing her father's death (suicide by gunshot, btw) to your children in lurid detail while you did everything but gag her to stop it (vocab: comportment and insight, executive skills). God save me, it was her wanting to pray over Daniel so that he might be healed. Healed. (See prev. entries regarding how he's glorious and I am a mess) I could not bear for Daniel to hear what she might say during this over-praying thing(No vocab for that, but boy, it pissed me off something fierce). It was her no longer able call a light a light or a bowl a bowl (vocab: agnosia).

It was her no long able to be her. I know that. I do

And here's the thing: For all that I did what was asked of me, for all that I checked and double checked and worded and reworded to drain every last drop of drama from it, for all that I swear up and down before you and God that yes, it sounds crazy, but yes, it did all happen, and finally for all that I only did it so that she might be treated and thus be Grandma, for all that, I ratted her out. Betrayed her. She is livid and bewildered (when she’s not talking about what a great visit we had). Her doctor is, as my dad says, "pretty shaken." Great. Just Great. I would like to speak to a manager please. Surely, there is someone in charge.

And also, can I get directions to the nearest Potter's Field on Mapquest?

But you must understand, I knew her when she was. When she was giving me her wedding dress as my own. When she was giving my biggest boy his first bath because I was bloody terrified of that red wailing wiggler. When she assured me that "twins are a good thing" and "we'll get through it." When she called me at the NICU when Fuzzy was intubated (5 years ago today). When she cooked and cleaned and ironed and yelled at me to "keep nursing and they'll be okay." All of these years before the first shadow and pall of autism—The mother of all “I want my mommy” screams. All this before that. And these, you see, are just the tip of the was's. Just the ones out in front in this one tiny bit of scribble. There are so many--God, how I do wish that had been my task, handling the was's and not the is's. Because then you would laugh and nod and think to yourself, "Oh, Daniel’s Mama’s mama, she was something else, that is for sure."

And she was.

I'm Angry

Posted by Anonymous.

I'm angry. I've been angry for three years, five months and ten days. That was the day you called me in the middle of the night (afternoon in your time zone) to tell me that you are an alcoholic and suicidal and you needed my help to come home. We spent so long on the phone and for the first time in my life I used my social work skills on a family member to make a contract with you that you would not kill yourself that night. When I hung up with you, and then with our parents, I collapsed into bed and sobbed into my husband's arms for hours. And the entire time there was a little voice nudging me from the far corners of my consciousness saying "what is all this stress doing to the baby?" You see, this was my first child, and I was new at this, and I was worried that all this stress on that poor little five-month-old fetus might cause some negative effects.

A few weeks later you arrived home. Against my advice (and all my training), you chose to stop drinking cold turkey. I warned you about the side effects, but you thought you would be fine. At 6 months pregnant I found myself trying to roll your stiff body onto your side so you wouldn't choke on any potential vomit while you were in the middle of a seizure (recommendation of the 911 operator). I was the one who tearfully convinced you to ride to the hospital in the ambulance instead of me driving you (terrified that you might seize again on the way). The entire time, that little voice in my head kept worrying "what about the baby?"

My second and third trimesters were filled with phone calls and planning sessions with you and our parents. Despite the fact that I had worked with countless families over the years with very similar situations, my suggestions were rarely heard or followed. I always knew when you had a particularly bad spell because the daily emails from our mother would stop. Then, a few days later I would hear about how you tried to slit your wrists in the shower, or how you were arrested for a DWI - twice (the second time after sideswiping a tractor trailer truck).

I'm angry that my entire pregnancy - my first child, our parent's very first grandchild, was overshadowed with your illness. I'm angry that our mother began to get hives every day when leaving work because she never knew what to expect when she arrived home. I'm angry that you showed up to my son's birth drunk (and you drove there!) I'm angry that our grandmother used her fixed income to pay your DWI fines. I'm angry that I start to worry when three days go by without hearing from our mother because that almost always means you've relapsed again. I'm angry that you've mooched off our parents for over three years now, giving little if anything in return. I'm angry that you were sober for so long, and I trusted you to watch our son for an afternoon, and you got drunk. I'm indescribably grateful that a friend happened to stop by and notice something off with you and call us so that we could race home to find our 8 month old scared and upset but not injured. You irrevocably damaged our relationship that day. Nearly two years later, I still haven't been able to forgive you for that incident. I have of course never trusted you to be alone with my children again either.

I'm angry that three years into your "recovery" you're still having relapses. You (finally!) found a part-time job, and with your very first paycheck you bought alcohol, hid it and drank for weeks. Now you want to get your license back and somehow I'm supposed to believe that your very first trip out of the house won't be to the liquor store.

I'm angry that you were often treated differently by our parents. You were the one who could crawl into bed with them after a bad dream while I was sent back to my room. You were the one who got a kitten for your birthday where my pleas fell on deaf ears for years. I didn't get a car until you were old enough to drive and "share" it with me. In high school and college I always worked 2-3 jobs. You just started your first part time job at the age of 26. Our parents always paid your rent and food and tuition bills. I still hear about the one month when I was a junior that I didn't have quite enough money for rent (despite working 30 hours a week and maintaining a full course load). Did our parents somehow always suspect that you were the "weaker" sibling? Did their special treatment help to contribute to your addictive personality?

I can't tell anyone in our family that I'm angry at you, because I'll sound mean and unsympathetic. They won't understand my anger and frustration. I have no where else to go with these feelings, so I write them here (yes, I know about ALANON. I've been before, but it feels like I'm sacrificing my already scarce free time to address your disease, and that just makes me more frustrated). I know that alcoholism is a disease. I know that you don't have control over this disease, that it controls you (and the family around you). I know that you don't want to be this way. Despite all of that, I'm still angry. I'm angry at the disease, and at what it's done to you. I'm angry that we've talked about this exact hazard for years. You've known and understood that our mother is an alcoholic since you were in middle school. I know you were a little lost when I left for college - you were stuck in the house with the drunk mother with very few opportunities to talk, but I tried to make myself available to you - I called often, and we emailed when we could and I visited regularly. You know and understand the genetics and the science, and you knew the risks involved when you started to drink in college. We were so very close for so very long. I'm angry that you didn't come to me, didn't talk to me, didn't ask for help before it was too late.

I'm angry that I've lost my sister. I don't think I'll ever see her again.

Dear Everyone: Please Stop

Posted by Anonymous

To my family and friends:

I’m grateful he means so much to you. I’m grateful for all you do for me. I’m so grateful I have all of you in my life. But you’re driving me crazy. Please stop thinking you know what’s best for me. Please stop ‘owning’ my son’s struggles. Please stop having the emotions I, myself, am not allowed, not strong enough, not weak enough to have. Please stop making it all about you and how you feel and how you think I should feel or deal or breathe or interact.

After his last surgery, many of you texted me that you had “tears of joy” because all went well. I was unable to have tears of anything (joy, relief, exhaustion) because I had to immediately move on to the next step for his recovery. I resent the fact I am unable to have emotions of my own because I’m constantly reassuring you everything will be okay, constantly explaining medical procedures to you, constantly trying to process your emotions so that I don’t even know what or how I feel.

On the flip side of that, I don’t necessarily want to share all of my feelings with you. I don’t want every conversation to be an in-depth look into how this is affecting me. If I’m upset, can’t it be because they were out of my favorite ice cream at the store? Do you have to automatically think the worst any time I do show a glimpse into how I feel? I have become guarded with my emotions because, most of the time, I haven’t had time to process how I feel in the current situation (see above) and because of those “personal” conversations you all want to have with me. Do you each think you will be the one to break through to me and show me the light on how I should feel dealing with all this? Do you honestly think there is a proper way to deal with any of this?

Stop telling me that I need to be on an antidepressant. It’s not making any of you happier and makes you even moodier than you were before. I am happy. I love my life. Just because you can’t wrap your head around being happy with a special needs child does not mean it’s impossible. I would not change one thing about the last 2 years. They have made me stronger and more appreciative of the little things than I ever would have imagined I could be.

Stop trying to get us involved. I have a four year-old and a two year-old. I’m constantly taking them to school, doctors’ appointments, therapy sessions, and meetings with social workers. The phone calls I make on a daily basis just to get the correct supplies to help my son live would make your head swirl. I have social outings with many of you. I have a wonderful husband I love to spend time with. Just because I don’t want to be involved in the latest community fundraiser or go listen to the “expert on child rearing” I don’t agree with doesn’t mean I’m holed up in depression. Just because I don’t want my four year-old involved in group sports right now doesn’t mean he will be scarred socially and resent his brother for having a medical condition. He’s four. I’m busy. We’re great.

I know you are affected by this and you are invested in this and you love me and my family. I appreciate how you try to show your love and support but please step back and try to see that we’re normal and trying to live our lives as normally as possible. Normal is living life. Normal isn’t medical stuff 24/7. He is a child first, a medical mystery second. He’s a normal child with an abnormal system. He’s part of us and we’re a normal family.

I love you all. I don’t know how I would have made it without your support. I love laughing with all of you. I love being with all of you. Thank you for enriching all of our lives.

Your daughter, sister, grand-daughter, sister-in-law, friend.

Who Do You Think You Are?

Posted By Anonymous.

I have rage issues. Seriously. I want to punch my psycho step-sister in the face. Right. In. The. Face.

She puts the pictures of my kids in a drawer, and is still bringing in picture of her family - pictures taken in 2000. Stupid bitch.

She brought in a cheap-ass calendar from MacQuarries, and covered up the calendar that the nursing home put up. Stupid bitch.

She threw away my father's Werthers candy, and replaced them with sugar-free candy. He is not diabetic. Stupid bitch.

She bought Dad a book, he can't read it. The print is too small. Stupid bitch.

Sooner or later, I have no doubt that our paths will cross and there will be an eruption of ginormous proportions. I think I have remained silent for just about as long as I possibly can.

Poor Dad. He still doesn't have a sweet clue who she is. The other day, a nurse had to ask her to leave because she was getting him so agitated with her stupid questions. When will she get it? She hasn't been in the picture for so long, and now she's playing the good daughter?! Stupid, stupid, stupid bitch.

The only bright spot - just about everytime she's there, Dad asks her where we are - especially hubby. Ha. Ha. Ha. Stupid bitch. I hope that rots your socks off all the way home.

Why am I allowing this to consume me? My anger towards her seems to consume just about every waking moment of my time. I wake up in the night with headaches, because I'm clenching my teeth so bad. I avoid the grocery store that I always shop in because I don't want to run into her daughter, becuase I'm afraid of what I might say.

Now she's bringing in the other brothers - one who hasn't seen or spoken to his father for 20 years. Stupid alcoholic bastard. Another hasn't seen him in 16 years. Stupid bastard. I think at least he had brains enough to give up the alcohol after he got fired. And he had the balls to leave a note for one of the nurses saying that he was upset that his father seemed so bored.

Are you people clueless? Do you have any sort of brain in your pea-sized head? Do you really think a man with Alzheimers, who hasn't seen you for as long as 20 years, and at least 5 for the stupid bitch, is really going to know who you are? Do you even deserve to be known? Do you even have a right to show your wretched faces? How dare you all. I hate each and every one of you with every ounce of my being.

This is killing me. Never have I known such anger, and it scares me. I think really crazy thoughts sometimes. I'm actually plotting my revenge and I have my speech prepared for Dad's funeral.

I just don't know how to handle this. I wish I knew what to do. I wish I knew how to just let it go, like hubby says. But I can't. What gives any of them the right to come back into his life now? What gives them the right to try and sooth their guilty souls. What gives them the right to be his children.

I just don't get it.

Confessions Of An Evil Friend And Concerned Mother

Posted By Anonymous.

To one of my dearest friends and godfather of my two young sons,

There has been something on my mind that I wanted to talk to you about. Perhaps I should do it in person, but I know I will not be able to accurately and appropriately convey the information I need to convey so I figured I would convey it in writing in order to get my thoughts down.

First, I am glad that you are feeling better and getting to the point where you can go about your regular schedule. It's good to see you doing well.

I also wanted to let you know that we you and are here for you if you need to talk or hang out or anything.

Now to the two things that are not easy for me to bring up but that have been on my mind. I feel I would be doing our friendship a disservice if I did not bring these things up.

First, I have been thinking about your ex. I know I asked you the other night if you had told him about your recent HIV diagnosis and I couldn't tell whether or not you intended to tell him in the near future. However, I feel that ethically you should. I know the doctors told you when you contracted the virus, but one thing I have learned through my work, my psychology degree, and the need to see many types of doctors (OB/GYN, Primary, Dentist, Oral Surgeon, Pediatrician, Surgeon, Osteopathic doctor, Reproductive Endocrinologist, etc.) is that doctors, tests, and technologies are often incorrect/inaccurate in particular if they are new. Because of this I think it would be wise of you to tell him as soon as possible and encourage him to get tested. With all tests (even old, well-known ones like pregnancy tests) there is always a chance of error and inaccuracy. In fact, I called the CDC and was told that there is no test to determine when you contracted HIV as you have told us. For this reason, I think you should err on the side of caution for his and your sake and have him get tested.

The second thing I wanted to bring up, and this is hard for me, is certain habits that we as a group have that I feel may need to slightly change. I have always prided myself in being a level-headed, educated, and compassionate person when it comes to HIV. When you first told us that you may have the virus I did research on the tests available for detecting the virus, the percentage of chance that the test would come back false, and I refreshed myself on some of the methods of transmitting the virus. One of the things that comes to my mind is sharing drinks, food utensils, or essentially saliva swapping. In general, what I read says you cannot transmit HIV by sharing drinks or utensils. However, those same sources (such as the CDC) go on to say that in theory transmission is possible if one person has some portion of blood in their mouth and the person they share a drink with has an open wound. The language used on these sites also leaves room for the possibility of transmission in this manner but states it is unlikely.

For myself I think the chances are remote and I am not concerned. But I guess because I am a mom now I feel the need to be overly cautious (even if irrationally so) with my two year old son, K. I have to be honest and let you know that the other day when you came over to the house for the inauguration I was disappointed, scared, and upset. I was upset by the fact that you let K drink out of your water glass. I don't know if you noticed but K commonly picks at his upper lip and at times pulls the skin off which causes an open wound from which he bleeds. Also, it is common that we as human beings have some portion of blood in our mouths either from toothbrushing, cheeck biting, eating hard foods, or general canker sore types of things. For this reason, I think it is best not to share drinks with the kids. It may sound strange but for some reason I can think about the rational remote odds of something happening should I share a drink and dismiss it quickly. But I can't do that with the kids as I don't know what I would do if for some reason one of them became the first documented case of transmission through drink sharing no matter how remote the chances were.

I know the chance of contracting HIV in this manner is remote, but I would expect that when it comes to K (and eventually my nine week old son), we would all want to err on the side of caution in this type of situation. Especially because most articles I have read (at least the ones that look as if there was some scientific research involved) make statements saying "transmission is unlikely" but "possible in theory". I would also think that as a person living with the disease you would certainly want compassion, but at the same time you would want to take extra precautions to ensure that you did not do anything that may put someone else in harms way no matter how remote the chance.

I'm not sure how you will take this letter. We still love you, want to hug you and kiss you, and be your family. Because of that I had to share this with you as I didn't want to get bitter and upset for feeling like you were being irresponsible and negligent when it came to K's protection. I didn't want it to be something I worried about that would eventually cause distance between us. So as hard as it is to bring it up I felt I had to.

I'm sorry you have to deal with this.

Sick

Posted by Anonymous.

Let me tell you about this man I know- I call him my father-in-law, because my husband calls him "Dad." Really? He was the shittiest kind of stepfather, withholding love, affection and worthwhile gifts while showering my husband's sister, his bio-child, with everything that he could. But my husband doesn't seem to resent it, he still calls him Dad.

My "father-in-law" has Hepatitis C. He also has a secondary disease that I have alluded to above that I like to call "Serious Asshole Disease." He has had Hepatitis C now for going on fifteen years- I have been with my husband for six of those years. During the first two, I rarely saw him. We were young, and the only time he came out of his room was to pull the intimidation route (note to parents, also to self- intimidating your kid's friends and/or significant others will not make them like you) At the top of the third year, he came out of his room and started smoking pot. Then drinking. My mother-in-law packed up and left- she said that if he could not live for his family, couldn't leave that back bedroom to eat dinner or talk to his kids but he could do so for drugs and alcohol then she didn't want anything to do with him anymore. He then started doing Pharmaceuticals. He swore he wasn't. Years pass, this behavior continues. We took him to the hospital last Christmas Eve because whatever he was on started a major GI bleed. (He lived.) That was my daughter's first Christmas Eve.

He came home and managed to fall and hurt himself on the next major holiday (I couldn't make this up, this kind of thing always happens on a holiday)That time he was just drunk. He turned a corner then, said that he had changed. My mother-in-law took him back. My sister-in-law started talking to him again. My husband believed him, hell, I believed him. He was convincing.

A month later the Hep C started kicking his butt. He ended up in the hospital and things got weird- he was disoriented and "off"- he even cursed out my preacher- but that was the disease. When liver failure starts kicking in majorly, it causes some people to lose their heads a bit, or so I am told. He got out of the hospital and went to all of his appointments, and got on the liver transplant list for our state.

Three months in, and we start noticing weirdness. He would get oddly aggressive when talking to people, stirring people up, even when talking to my not quite two year old. Have you ever seen somebody pick at a child until the kid is screaming and they are all the while laughing while the child is upset? That's what he does. One night I saw him fix a drink and take a swig. We made eye contact, and he poured it down the drain. I was still angry, so I asked him why he was drinking again. He told me a sip wouldn't hurt him. My mother-in-law, sister-in-law and husband confronted him, and he mocked them.

This month he went to a checkup at the liver doctor. He quit smoking for two weeks and didn't drink for a bit and went for his checkup. The doctor moved him down the list, said that he was doing better. That was three weeks ago, he is now drinking openly, smoking again, and I acting a lot like he's back on the pharmeceuticals again. Today he went to the regular doctor and was supposedly told that he's better now! He doesn't need a new liver at ALL, and he is off the list. I think he got kicked off, that they found something in his blood system that proves that he isn't a good candidate for a new organ.

He isn't a good candidate. Hep C causes cirrosis of the liver. A new liver will give the Hep C patient a good chance to live a LONGER life, but it isn't the golden ticket. He will always have Hepatitis C. If he won't behave, then he will destroy the new liver too.

We have tried confrontation, we have tried trusting him. I even told him that if nobody cared then we wouldn't ask about it, would not even ask about the drinking. We don't know the truth about the doctor visits, we don't have a clue what is going on.

I am angry. He made my husband's childhood so hard, and now his twenties too. He has no respect for my mother-in-law or any of my husband's or my family. I wish that if he was going to commit suicide, that he would just do it already and save us all the pain of watching this destruction. He told my sister-in-law that he didn't care if he lived to walk her down the isle later this year or not. We've asked if he was depressed- he mocked us.

I don't want to see my kid get hurt by this man. She is his first grandkid and he doesn't seem to care - she is only two, but she is a very AWARE two year old, you know?

How Could You?

Posted by Anonymous.

How could you?

While we were at the ER, getting my husband's tachycardia treated with beta blockers, you called me. While I was sitting there wondering how he could possibly be this sick - whether it was a reaction due to the rare illness he thinks he has, or a simple panic attack - you were at my house thinking. You called me, and you asked if I knew what dexamethasone is. No, I said. You asked me if I knew about Cushing's Disease. I said yes, that's what my husband thinks he has. You said that you were concerned about some things.

Silly me, I thought that your husband had been looking on the computer and finding out information to try and HELP, because he is a smart man and maybe he would like to help out.

How could you?

When we walked in the door, you were both sitting on the couch. You said we needed to talk because there were some things you were concerned about. At that point, I could tell that you weren't going to say anything helpful.

I thought that you were going to have a talk with us. At the worst, I thought you'd accuse him of being a hypochondriac who tries to self diagnose himself on the internet. At the worst, I thought you'd try to intervene, saying he needed to stop and just see a doctor and let the doctors decide. At the worst, I thought you'd make me feel embarrassed for letting him go on about this illness that he is convinced his symptoms fit.

How could you?

I could not believe my ears. You asked about the prescription bottle of dexamethasone on the desk. For a minute I was confused, then realized that you were talking about a bottle of CAT MEDICINE. Medicine that the vet prescribed to our cat this summer to try and treat his huge fucking ear infection that keeps coming back. You asked if my HUSBAND had been EXPERIMENTING on himself, if he had taken the steroids that were prescribed to my CAT to try and test himself for Cushing's Disease. Have you been experimenting on yourself? you asked. It is the exact steroid they use to test for Cushing's - do you see how that looks to us?

HOW COULD YOU?

How could you look at me like that? How could you ask me several times about the drugs even after I disbelievingly said that those were the cat's pills, that they've been sitting untouched on that desk for six months? How could you look back and forth between us and ask if we could see why you'd be concerned? How could you accuse my husband of experimenting on his own body like that?

YES, he mentioned that he'd been testing a theory. Do you know what he MEANT by that? The ONLY thing he did differently today was eat a BIGGER DINNER than normal. That was his big, scary test. Well, it seemed to work, better than he'd thought. No, he could not have forseen that taking his normal ADD meds, then drinking some soda (things he does every day) then eating Thanksgiving dinner would send him to the hospital with a VERY high heart rate and blood pressure, dizziness, shaking and practically fainting.

How could you think that he would take unprescribed steroid medication, medication that was prescribed to an ANIMAL? How could you think that my husband would put himself at THAT kind of risk? Even if he did, how could you think he would do that TODAY, on Thanksgiving, when we were going to be around family. Come on, we're smarter than that. If we wanted to hide something from you, we would DAMN WELL hide it. How could you think I would let him do that under my roof, when we have a child? How could you, after all these years, so misjudge both of us?

How could you accuse him of putting himself at risk that way?

How could you look at me like that, and think I was LYING to you?

How could you make me feel so stupid? So untrusted? So childlike?

How could you put me in this place where I sobbed after you left, and now I don't know what to do, if I should tell you how much you hurt me, how much you added to the stress of an already stressful day, month, year...?

How?

Sick

Posted by Anonymous.

Imagine you had a grandchild who was immune deficient. Now, just say you had another grandchild who came down with gastro and then add into the mix that an arrangement had been made with two other grandkids (who you don’t see very often) for a sleepover. Would you then go and visit the infectious grandchild just before the said sleep over, considering those kids are the siblings of the immune deficient child?

Would you not tell the parents until the big kids had been in the house for 24 hours that you had been to see the sick kid?

Would you carry on and make the eldest grandchild feel bad when she wants to come home (for fear of infecting her sister with gastro) when she finds out that the still infectious child is coming to be babysat at the sleepover house?

What about if the grandfather suddenly came down with the stomach bug? Would you tell the grandchild she was selfish for wanting to come home?

As the mother of the immune deficient child, would you be angry because you know that once the gastro hits your house (and it will) and the immune deficient child gets it, it will mean another week in hospital?

I don’t get it.

No, my parents in law don’t get it.

Either that or they just don’t care.

We have a mess of kids. The bug will run through them like wild fire.

Our family dynamics are already strained. Very strained.

We don’t need this and yet the two (now infectious children) are on their way home.

I don’t usually swear but

FUCK.

Living In Pain

Posted By Anonymous

My husband is in constant physical pain. We don’t even really know what’s wrong with him (one doctor said RA, another said Neuropathy), but the pain is so bad that he can barely walk some days. Other days he gets fed up and just yells at anyone who crosses his path. On those days our kids are afraid of him. He’s not physically abusive, but the yelling bothers them a great deal. This morning my 2 year old son was sitting on the couch and when my husband came in and sat next to him, my son cried and reached up for me to pick him up. I’m afraid he will never remember his father any other way.

A couple of weeks ago we all went out to a community fair and had to walk a little ways from where we parked. My husband started yelling at me that I didn’t understand what he was going through (even though I had offered to drop him off right at the gate and then go park and walk back). There was such a hateful sound in his voice and I was so ashamed that he was acting that way out in public, in front of our children and total strangers, that I found myself wishing he would die and leave me in peace.

I know how horrible that is. And I feel guilty for it the most when my husband has calmer moments and sits with me and talks with me and really listens.

I don’t know how to live this life. I hate my job and have hated it for years, but I can’t quit and risk a pay cut and loss of health coverage for my family. One of the few comforts I find (other than my children) is in food, especially sweets, and my weight is out of control.

Obviously I feel for him, being in pain all the time is terrible. But his health and behavior is affecting all of us, and it seems like something has to give.

Home Sick

Posted by Anonymous.

two days ago she told me that the doctor has called for a test. a bone marrow test. she is my little sister and i have to help hold her while she faces what may be leukemia. maybe. i've spent two days distracting her/myself from what she describes as 'this demon inside me.'

fucking fuck.

fuck.

no seriously, fuck. i'd never say it to her, but this isn't fair. cause it's not just that, it's the triple threat. it's the my-mom-was-diagnosed-with-parkinson's-six-months-ago-my-other-sister-was-diagnosed-with-ms-one-month-ago-and-now-my-sweet-precious-love-her-like-my-daughter-sister-is-facing-the-C-word triple threat.

and i'm treading water. like a madwoman.

i wish it was me. seriously, i wish it was me who had this and not her. i always wondered how people could want to take something so horrible from someone and bear it themselves and now i get it and i wish it was fucking me.

she keeps saying that she feels homesick. like when you're visiting your grandparents over the summer as a kid and the whole day is consumed by sunny fun and then you get back to their house and sleep in a strange bed with sheets that don't smell the same in a room that's just a little too cold on a pillow that's just a little too thin and your stomach aches for home.

only, she is home, and she feel's like that.

shit shit shit shit shit.

i keep drawing a blank when she asks me where the hope is supposed to come from. how am i supposed to face this with her?