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tbritt
05-05-2006, 11:12 AM
I have been off work for 3 days now with lupus related symptoms, and with each episode that occurs my children have more and more questions. I feel like lupus is too complicated to explain to them, but I don't feel like their worries and concerns should be ignored. My son is 13 1/2(gotta get that half in there) and my daughters are almost 12 and 7. The girls are especially sensitive to my moods and they can always tell when I don't feel well. Fatigue has always been an issue, but so far I have been able to handle (barely) almost everything I need to. As time goes on, I seem to wear down faster than before and they are quick to notice everything. Yesterday, after returning from the doc, I really needed to get a nap before my daughter's softball game. My oldest daughter came into my room and knelt down by the bed. I knew she was upset about something. She said, "Momma, are you okay, like really, OKAY?" In other words, "what is going on here?" We recently lost my mother-in-law to cancer and I know that had an effect on the kids. She was their step-grandma, but they loved her and miss her. I tried to shield them from as much as possible, but watching someone lose so much weight, and then their hair, and then their abilities, and then their life is traumatic for a child. I found myself thinking--what would I ever do without my Momma? So I know it passed through their heads, too. I have truly been blessed with wonderful, caring, compassionate children. I don't want to place undue burden on them, but I am not sure if uncertainty is worse. These are very mature kids, even the 7 year old, but I feel like I am between a rock and a hard place here. It's just not fair for them to have to worry about me. I know I have to have a sit-down with them. I need opinions on what kind of spin to put on it...please help!! :cry: [/img] :cry:

TracyDawn
05-05-2006, 12:43 PM
Tell them the truth. That you have lupus and it won't go away. That you will have good days and you will have bad days, and sometimes even worse days. That if you snap at them on those days, it really isn't them you are snapping at. Tell them you may have to change your schedule and how you spend your precious time with them, i.e. board games (I told you I'm all about the board games LOL) instead of twister. There is also a book at the library, I think it is called When Mommy gets sick or something like that. I'll try to find out the exact name. It helps explain in kid terms they can understand what is going on. I wouldn't sugar coat it to "protect" them tho cause that might scare them more. I tried that approach with my 7 year old and let's just say it brought more questions and worries from him cause he didn't understand it all. Tell them you need more help around the house, especially on those days. From the way you talk about them they are caring kids that want to know the truth and will want to help you feel better. Letting them help you in that way makes them feel more useful than sitting around worrying about what is going to happen to you tomorrow. {{HUG}} I don't envy you this conversation at all because I have been there, I think all of us with young, or even older, kids have been there. But I really do think things will get better when you explain it to them. What I told Bry was he has little soldiers in his body to protect him from getting sick cause antibodies. And normally they do the job right for everyone. But mine got confused and now are fighting each other and it makes me feel bad. Then he took it from there with his questions and I answered them as honestly and as fully as I could. {{HUG}}

ganesha
05-05-2006, 01:03 PM
Tracy mentioned exactly what I was thinking. You should be as up front and honest with the children, which will allow you to ask for their help on those days when you are not feeling well. They seem like great kids who will gladly help if they just know that you truly need it and why you feel the way you do. I know there is the temptation to act strong and to not let the kids know the extent of the truth, but it is a hard world out there, and you will need the help, and the kids deserve to know the truth about you and the world. Good luck.
Brent

tbritt
05-05-2006, 10:39 PM
Thanks, y'all...while I don't look forward to this conversation at all, I know it is inevitable. I really have to work on handling my emotions when I talk to them. I know they will get more upset if they know I am. I am sitting here bawling my eyes out thinking of their faces. It scares me to death to think that I may have passed this on to one or more of the three of them...I would hate to know the odds. My babygirl complains of back/leg pain and I shudder in fear for her. Saysusie, if you read this, I know you lost your daughter and my heart is broken for you. If you have any words of encouragement, I would deeply appreciate it. I'll let y'all know how it goes.... :cry: