Hey Evwryone , I am new here although I have been diagnosed with Lupus for almost 3 years. I joined to seek out support regarding parenting and being a spouse while dealing with a chronic illness. Right now I am really struggling with my middle child who is going to be 7. She seems to try to take advantage of me when I am not feeling well. My husband has to travel for work so I am often home alone with my three kids for two days at a time. Emma is a rather strong willed child and I think a lot of the time she is testing how much she can get away with while Dad is gone and I am sick. It is frustrating to me that I end up having to lay the law down all the time to get her obedience. Do you have any suggestions on disciplining children while sick or how to encourage my daughter to see the benefits of helping instead if fighting me at evey turn? I swear if we were magical she would completely be sorted into Slytherin! (FYI, I am a huge geek) Thank you for taking time to read and respond:)
It is extremely challenging to raise children when you feel so horrible all the time. My youngest is 8 so I totally understand. In my case I chose to let the housework go ( I clean but don’t bother with the clutter) and I spend as much time as possible with my kids. I have three, 19, 16, and 8. They have never known a mom who is healthy so they can’t really compare. My sister’s daughter is strong-willed and her husband is gone all week. She ended up going to a psychologist because there were so many battles. Interestingly enough the counselor found that my sister wasn’t really listening to her daughter and would cut her off before she could finish her thought. Once my sister started giving her daughter her full attention and waited for her to finish, they started getting along much better. I’m not saying that that is what is going on with your daughter but you might try seeing a child psychologist or taking a parenting class. I also strongly believe in making the punishment fit the crime. They make a mess and don’t want to clean it up then they get the choice of cleaning it up or it all going into the trash. If it’s dishes etc then I put them on their bed or on top of their toy chest. Above all stay calm. Kids try to get you riled for some reason. If I start losing my cool, I tell them we’ll discuss this later, and go lay down until I can be rational again. It helps that I was working on my masters in child psych so I know what normal age appropriate behavior is. It also helps to keep them busy with after school activities. All of my boys played sports. My oldest is in college now so I don’t see him that much. He was my difficult child so our house is much calmer now…lol My middle son plays baseball year round and is so tired that he doesn’t have the energy to raise a ruckus. Our youngest goes from one sport to the next as well as Cub Scouts, Sunday school, and gymnastics which is on hold til summer. My best advice and what kept me from collapsing in a sobbing heap of pain is to keep them busy. I created my rest spot in my car with everything I needed. Good luck! Annemarie
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Thank you for both of your responses! It is a comfort just knowing that it is possible to survive:) My kids are almost 9, 7 and 3. We allow the kids to be involved in one activity at a time. With school and church that seems to be about all I can handle. We don’t have any family around so I just don’t have the help to do much more. I will try to be more aware of my listening skills and what Emma is trying to say to me. Often in any relationship not listening to the other person can cause issues. I also think that I do need to keep her busy. I think that on the bad days I need to have a plan in place to keep her busy. Maybe activities that we only do on the bad days. Games that we can play while resting on the couch. Maybe it would be a good idea to have a list of friends we could call and she could play with when I am having a tough day and we can’t get out. It has helped already for me to read your responses. I think that I am so isolated sometimes it is hard to see my way out and I just feel overwhelmed. I will also look into a counselor in our area. Thank you again for taking the time to respond and to remind me that we can all survive these child rearing years:)
Wow Heather, I’m really impressed by how well you not only took in advice from here but also brought up new ideas! It’s true discussion can bring about the most creative thinking…
Anyhow, I am not a parent and will not be for a number of years (I’m 26, in grad school, and not even placing serious focus on dating.) However, I can speak as a strong-willed child of a sick mom. And now, a child who has grown up and mellowed out (some) whose mom hasn’t adjusted her knee-jerk reactions to me (and vice-versa!) and who actually had this crazy jealousy-like, power-struggle response when I got sick, completely minimizing my struggles instead of empathizing or even just acknowledging the weight of the issue, physically and emotionally. That was of course devastating.
I would imagine you and your daughter will fare much better than my mom and I, given your seeking of support and excellent strategies already in mind. Our relationship has continued to be a disaster since I left home (start of college, didn’t even spend summers at home, for both of our benefit, despite going to school 4mi from our house!) One thing that’s helped me not have such an emotional response to her, or at least keep it to myself for the sake of effectiveness, was months of therapy and meditation classes. It’s become my job to let things roll off me, instead of doing what I’ve always felt the need to do… Defend myself (and she feels the same.)
I suspect our problems may be quite different from yours. However, I can say I admire and expect great benefit from addressing the issue of parenting effectively within your means and understanding the reasons for her actions (it may just be temperament colliding with frustrations in the situation… Strong-willed can also be strong passion without defiance.)
The suggestion to stay calm or take up the discussion when calm sounds like a premier strategy! My mom was a yeller, which later escalated to being more verbally abusive in my teen years. Again, I don’t think the scope is probably the same, but there may be ways that she just reacts really poorly to either (or both) your disciplinary style/thresholds and your limited availability (which obviously is necessary but at 7 and younger she can’t see that…) Kids that age still are and should be in a role of having their needs met rather than the other way around. That’s a really key point that’s tough with a sick parent, and like one respondent said, boundary-pushing is often about finding that. I was actually great about chores, hw, playing well with my sister most of the time, etc, but tended to test her personal boundaries I guess in terms of energy to keep up with everything I wanted to do and know, and I definitely demanded a “why” for every rule (I still annoy her as an over-analyzer… Gee, you think? 
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My therapist suggested guilt over not being able to do all she wanted as a parent turning into resentment toward me wanting it, redefining it as unreasonable demands. That hit my experience right on the head. I don’t think I would have minded so much if she said, no, I’m sorry I can’t, but it was always some form of no, and that’s too much to ask. It was hard for her to understand, much less accept, she had limitations on her ability to parent, since she didn’t have a diagnosis for a while, then it was Fibro (when nobody believed it) and low back disk pain. When I was in high school she had thyroid cancer and a botched spinal fusion surgery, and significant role-reversal led to more conflict. Again I think her (devastating) sense of parental inadequacy turned sour at me (but not my conflict-avoidant sister.) Thus, taking care of yourself is essential, and the delicate line is how to protect yourself from overextension without your daughter feeling you are rejecting her, abandoning her or overly limiting her. It must be so hard, and daunting as I think about whether I can still be a parent how I always hoped… You’re doing great 
Brynn
I have 3 children but my “baby” is 17. I noticed when I felt the worst seems like they would act out the most. I learned that sometimes just a long hug was enough to calm them down and give them the attention they needed. I also learned how to “choose my battles” carefully. For example if my daughter didn’t want to put on her coat I would let her go without it but told her that it would be there if she needed it. And pretty much every time that happened she would be back to get that coat. I’m not saying to let your kids do everything they want or let them have everything. But some things just were not worth it to me to argue about. It has worked for our family. And I am proud to say that my children are all wonderful, well adjusted and happy. One now In grad school, one in college, and one in high school.
It is overwhelming when they are so young and need so much attention and you feel so bad. Hope you find a parenting style that works for you.
She’s testing boundaries because she can with her dad gone & mom sick. Make sure she knows what the consequences are for bad behavior & follow through. After a few times of enforcing punishment for her action she should figure out she can’t get away with not listening to you & change her behavior. When it no longer works to try & get her own way she’ll give it up, hopefully. I’ve been there with not feeling well & trying to parent. I had to choose my battles carefully. Working, parenting & going to IV clinic even with a husband wore me out. My son was 3 when I was diagnosed with Lupus, I was 42 my husband 57. Eventually I had to go part time @ work, get some help & tell my husband he had to help out. We got through it. Hope things improve
My son is thirteen, and overall I think he's handled my being sick rather well. He's quite solicitous, careful not to hurt me, and generally is supportive when I feel lousy. I've always been straight-forward with him about it, told him when I'm too tired or too painful for something, but also not stinted on playing and goofing with him when I CAN do it. However, one difficulty I'm running into is that he seems to want to compare hurts. He'll complain of HIS joints hurting, or this or that pain. I'm not entirely sure if it's a bid for attention, an odd competitiveness, or an attempt to relate. I struggle with my own reaction to him doing this, because my cartwheeling emotions sometimes want me to get angry and resentful that he's mimicking me this way. But I've tried very hard to overcome this knee-jerk response, partly also because I'm terrified that he'll be telling me about joint pains and actually IS suffering from something. Worst nightmare there. I also don't want to get angry at him for complaining about it because it gives him a bad example of how to respond. So I try to be sympathetic, try to pay attention to details and mentally ferreting out the truth of the matter, and usually end up blaming his pains on growing. (Which he is admittedly doing a LOT of nowadays. His feet grew two and and a half shoe sizes over the winter!)
It's such a hard balance, though, knowing how to spend time with him when he needs it, even when I don't feel good. I've felt guilty about needing naps in the afternoons, and often stayed awake to see him home from school before laying down, to try and show HIM that he's important to me, but also take care of myself. It's tricky.
Heather, it sounds like you have some excellent thoughts on how to proceed with your daughter. Don't be afraid of setting and enforcing boundaries, but also picking your battles. Lots of good advice from folks here. ::nodnods:: Communication, love, affection, time spent together, all things that could help things. It's confusing for kiddos when momma doesn't feel good.
Heather, I am so glad I am not alone. Although hate to hear anyone else is dealing with it. I am 27 and have a 9 year old daughter and 6 year old son- divorced and just remarried a few months before my diagonsis of Lupus! Just today I was telling my husband how great ful I was for him. The kids dad doesn’t have much to do with the kids unless it benefits him in some way! I also have a full time job that I am having difficulties going to daily. Today my PCP suggested I file for disability. I just don’t know what to do or what is best for the kids. Sometimes I feel like I make them worse because I feel sorry for them for dealing with a parent in my condition and then having a real dad that isn’t around much- they defientely spend more time with their step dad than anyone else. Good luck to you!!
Thank you all for being open and sharing some of your own experiences and ideas with me. It has really helped more than you know. In my social and family circle there just are not people who can understand what I am going through. Bless them they try but I am o
ften left with trite advice that does me no good. This may sound weird but you all have helped me push my way out of a downward spiral. I was really having a hard time overcoming my negative thoughts. It amazes me the amount of guilt that can come with a chronic illness. Today has been better with my Emma. I tried to listen to her and picked battles that were worth it. Open defiance worth it. What shoes she wore to school not worth it:)
I think... for myself, anyway, sometimes I can slip into a bad habit in parenting. With so much out of control in my lief, I tend to try ot OVER control other things and other people. This most especially applies to my son. When I am hurting, I notice a particular inclination to nit-pick the poor boy to pieces. Thankfully my hubby is there to give me a nudge and remind me of what is and is not truly an issue to chew our son out over. I'm doing better than I used to, and can catch myself when I begin gnawing on him. A simple reminder to myself that he is being a normal kid, and that sometimes a happy kid is worth the little not-quite-perfectnesses that occur.
I really appreciate your openness as well, Heather. You are absolutely right about the guilt as well, most of it self-inflicted. All we can do, though, is try our best for a good balance of both happiness and discipline (which is SO much harder than it sounds!), while making sure that all of it is seasoned with an unflagging love.
Talencia, my middle son grew so fast at 12-13 that he has stretch marks on his back from his skin not expanding fast enough. He pretty much lived on ibuprofen during his growth spurts. He ached all over, would get leg cramps so bad he would cry. So they do have pain, particularly if they play multiple sports. He suffered a pars fracture of his spine and ignored the pain til he couldn’t anymore. He ended up in a brace for 6 months wirh no sports allowed. I’ve never seen such an unhappy kid when the doc told him that. He recovered but had to give up basketball as the fast stops/starts kept aggravating his back. So now he plays baseball year round and has colleges eyeing him for their programs. He is the one who totally gets my pain. I don’t think he grasps that I won’t ever get better but I’m not sure I want him to. However my younger son has started complaing about his throat hurting etc… and when I check it nothing is wrong. So I understand your concern that he is either mimicking you or faking it. In my son’s case he just doesn’t like school…lol You might research the location of growth plated and if he complains about pain in those areas then he’s probably growing. They also tend to eat and eat and eat before one hits. I’m always worried that my boys will develop a rheumatic disorder because the genetics are very strong in my family. Their pediatrician also keeps an eye out for that sort of thing and he will put them on antibiotics to keep me from getting what they have. I don’t usually bother him with the minor colds just the ones that last. If only my rheumy would be as protective of me as he is…lol Good luck!