Advice on helping my young children cope with my BEB


Posted by Kelly Saffell , May 20,2001,16:41   Archive
I received my injections on Friday and this time I have a whopping bruise on my left eye. I am lucky that in the 4 years this doctor has been injecting me I have had ptosis once, a small bruise a couple of times and I've never had blurred/double vision or dry eyes so I certainly can't complain. This bruise runs the entire length of my eyelid and extends a little past the outer corner as well. My 3 year old is oblivious but my 6 year old is scared. She is extremely sensitive/empathetic and tends to keep things inside. She kept getting out of bed last night and finally told me thru tears that she is scared that my eye hurts and that maybe I'll get worse. When she was 4 she drew a family picture at pre-K of me with no eyes and said they were sick. I decided then that hiding this from her wasn't the right decision so I have since been open with her about what it is and the injections that I have to receive. I had a suggestion to make her a "God Box" so that she could write down her worries and put them in the box so that she wouldn't have to worry anymore. HELP!



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Re: Advice on helping young children cope with BEB

Re : Advice on helping my young children cope with my BEB --- Kelly Saffell
Posted by Shirley-Arkansas-USA , May 20,2001,17:30 Top of Thread Archive
I believe that young children can handle this if it is explained to them. They need to know that although this disorder will keep you from doing some things some days, there will be other days that you will be able to do everything. They also need to know that this will not kill you or make you go blind. I'm glad that you have been talking with them about this. Even though your three year old may seem oblivious, I doubt that she is. She may be choosing not to make an issue of it since her older sister does. Kids normally go in opposite directions as they are growing up.
Explain that the bruising is just that, a bruise and that although it is not pretty, it doesn't hurt mommy. It is just one of the side-effects of your treatment that helps you to get around better. Tell them that you knew that this might happen and tell them what other side effects you might have so that they are not surprised. Let them know that the injections are uncomfortable and hurt a little bit but sometimes we have to do things in order to make ourselves feel better. Let them know that you are a strong person and there are other people out there with this same thing. Explain to them as much as you can but in simple terms that they can understand. As they ask questions or are concerned about something, answer their questions openly and honestly. If you try to withhold information from them, they will pick up on it and think the worst. Kids have very vivid imaginations.
I think the God box is fine or a worry box, etc. Just address all the worries and concerns and tell them what is going on.
Knowledge is power-even for kids.
I have two sons. They are 17 and 20. Much older than your girls but we have always talked to them about any and everything. If it is asked around my house, it is answered. That is nothing new, it has always been like that with no hedging. Kids can deal with this if they understand.
Good luck to you. I don't know that I could have handled this nearly as well as you have if my kids had been very young. Hope that this has helped some.

Shirley in AR.

--modified by Shirley-Arkansas-USA at Sun, May 20, 2001, 18:26:07




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Re: Advice on helping young children cope with BEB

Re : Re: Advice on helping young children cope with BEB --- Shirley-Arkansas-USA
Posted by Kelly Saffell , May 22,2001,08:31 Top of Thread Archive
You are definitely right about children having vivid imaginations. I chose to hide this from her when she was younger but she knew something was wrong. I worked up until Dec 1999 when she was 4 1/2. I was a wreck and could hardly give a bath after working on a computer and commuting 2 hours round trip. When I saw that picture of me with no eyes I started to cry. She had been "acting out" at preschool and it was because she was scared and knew I was having trouble taking care of her and her sister. I am better now that I don't work and I have been open with the girls about my condition. I guess I also feel guilty because I can't take them to the zoo, etc. without my husband or friends driving us like other moms can. I have alot of great friends but sometimes I still feel very alone trying to handle being a young mom and coping with beb. Everyone has their burdens to bear and I am so blessed that I have to continuously focus on the positive-great husband, friends, family, healthy kids, and the support of people like you. Thanks!!!



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Re: Advice on helping young children cope with BEB

Re : Re: Advice on helping young children cope with BEB --- Kelly Saffell
Posted by Andrew Karter , May 23,2001,16:48 Top of Thread Archive
My kids (8 and 4) are also very sensitive to my problem. Now they ask to rub my eyes whenever I have bad problems with blinking. It feels great (and I tell them). That makes them feel like they can help.



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Re: Advice on helping young children cope with BEB

Re : Re: Advice on helping young children cope with BEB --- Andrew Karter
Posted by Kelly Saffell , May 24,2001,21:26 Top of Thread Archive
I never thought of involving them. Maybe next time I get my injections I'll have her make me up a cold compress and hold it on my eyes. She thrives on being a helper and feeling responsible.



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Re: Advice on helping my young children cope with my BEB

Re : Advice on helping my young children cope with my BEB --- Kelly Saffell
Posted by Virginia , May 20,2001,19:09 Top of Thread Archive
Like Shirley, my children are older, out of the house, and don't see me at my worst. Actually after the breast cancer, they've had their scare and figure that whatever it is "Mom can handle it" (I hope they are right). I admire your ability to care for your children while trying to manage the BEB/Meige.

You must be doing something right, because your 6-year old did confide her fears so that you could discuss them. That's a good sign. Encourage her to do that. You can't reassure her if you don't know what's bothering her. And let her know that her love and concern for "her mommy" mean a lot to you, but that it isn't necessary to worry about you - that the doctor is taking care of you. Tell her as much about your disorder and treatment as you think she can understand.

Even though my kids aren't little ones any longer, they still have times when they are upset and call me just to let it out. I know I can't usually help them, except by listening, but somehow that does help. My son is extraordinarily sensitive to other people and is usually the one on the other end of the phone. When I tell him not to worry, he says that's easy to say, not so easy to do. He's right.

So listen to her, encourage her to voice her concerns, and hope that she will come to accept that bad things happen, but we deal with them and get past them. And worrying doesn't make them better.

Good luck and enjoy those little ones - they grow up awfully fast.

Virginia in AL




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Re: Advice on helping my young children cope with my BEB

Re : Re: Advice on helping my young children cope with my BEB --- Virginia
Posted by Kelly Saffell , May 22,2001,08:41 Top of Thread Archive
I sought help from a developmental pediatrition recently and she told me that Morgan "carries the weight of the world on her shoulders." My 3 year old has always been very verbal about what is bothering her. Morgan tends to get angry and "act out" instead of just coming to you. The fact that she told me she was upset about the bruise was huge for her! I was also told that because she tends to internalize things she is at a risk of becoming depressed later on in her childhood. She did say that because we talk to her openly and encourage her faith that she believes she will be fine. I tried to hide this from her for years but after she drew the picture of me with no eyes I knew I had made the wrong decision. Morgan is also very dramatic so she tends to make things worse than they are. She is worried about me being in pain so I told her that although the shots do hurt some that it doesn't take long and they help me be able to take her to school and learn to read so they are good, not bad. I feel so much less "alone" now that I have found friends on the BB to talk to. Thanks!!



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Re: Advice on helping my young children cope with my BEB

Re : Re: Advice on helping my young children cope with my BEB --- Kelly Saffell
Posted by Delaine Inman , May 23,2001,23:00 Top of Thread Archive
Kelly, you are a wonderful mom and a brave soul to be coping so well with BEB and motherhood. Children are so different. My son was always his age going on 40, no matter how young he was and my daughter was totally different. She just thought she was grown, but Chris was so mature and super responsible it was scary sometimes. But what ever their personalities, you can't hide things from them or try to protect them, they can sense when something is wrong and like even us adults ...imagine the worst. So it's best to be honest and give them as much information as possible for their age and maturity. My 4 year old granddaughter knows I have to take a nap every afternoon and sometimes even will ask if it is time to rest my eyes. If she sees them closing she comes and asks if I need to rest my eyes. She is really sweet about the whole thing. Sometimes I can read her a story and sometimes I tell her I can't and ask her to tell me the story from the pictures. I never let anyone ride with me if I drive. I can only drive on good days and for a few miles at a time and it takes all my focus and concentration to do that.



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Re: Advice on helping my young children cope with my BEB

Re : Re: Advice on helping my young children cope with my BEB --- Delaine Inman
Posted by Kelly Saffell , May 24,2001,21:24 Top of Thread Archive
You are so sweet and supportive. I feel like we are making progress with Morgan. One year ago she would have acted like she didn't care but would have acted out in other ways. At least now she will tell me that she is worried about me or that she is sad that today was her last day of kindergarten and she misses her teacher already. Morgan began reading chapter books several months ago and I sit with her each day while she reads her book. She is always looking up at me and asking if I'm asleep. I do manage to read short books to the kids alot of the time. Driving with them is what bothers me the most. Alot of times I will lean my head back so that my eyes can close and I can see thru the slits. Morgan flipped one day because she thought I was driving the car asleep. I explained what I was doing and she hasn't mentioned it since. We do try to run most of our errands outside of a few mile radius when dad's home to drive!



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Re: Advice on helping my young children cope with my BEB

Re : Advice on helping my young children cope with my BEB --- Kelly Saffell
Posted by Sally - in - Idaho , May 21,2001,14:31 Top of Thread Archive
Kelly, I think you are going about this whole thing in the right way but being open with your children. Obviously, they feel they can ask questions and express their fears.

Have you tried relating your eye bruise to a bump on the leg or elsewhere that your daughter might have received recently? And as for the injections ... how about comparing them to the innoculations your children no doubt have for childhood diseases. They could remember that those hurt a bit for a while, but the pain doesn't last long.

Your idea of a "God Box" just might be helpful as children love fantasy and make-believe solutions. A fear could be written down, discussed, and then put in the pretty little box for God to take care of. Sometimes children just need to know that it is okay for them to stop worrying, that someone else has taken over now and they can get on with their job of being a child. You might even have a ritual of removing the little concern slips from the box regularly and talking about how the problem was resolved, or if it needs to be given back to God for a longer term.

With your open discussions and willingness to share with your children what you are going through, they should grow up to be very caring, compassionate individuals.

Good luck.

Sally in North Idaho




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Re: Advice on helping my young children cope with my BEB

Re : Re: Advice on helping my young children cope with my BEB --- Sally - in - Idaho
Posted by Kelly Saffell , May 22,2001,08:53 Top of Thread Archive
It's funny you mentioned her having a bruise. She had a big bruise on her hip that she showed me the same night. She has no idea how she got it(she's my athlete!) and when I pushed on it she said it didn't hurt. That is when I let her touch my eye and I told her it didn't hurt either. She was still upset that night but hasn't mentioned it again. Your idea about removing the fears later to talk about them is a good idea I hadn't thought of. She carries the weight of the world on her shoulders and I do want her to feel free to be a kid and not worry about the "grown up stuff." I had an emergency appendectomy back when she was 3 1/2. Shortly after she began some aggressive behavior in preschool. I finally went to a child counselor for help and the first thing she did was get the doctor kit and the dollhouse people and acted out mommy being sick and daddy and the doctors helping her. She had acted like it was no big deal and never said a single word about it but it was eating away at her. Then she drew the picture of me with no eyes. I am now open with her because sometimes the imagination can run wild. I learned the hard way that protecting your kids isn't possible so honesty is the best policy. Thanks for being so supportive. I feel blessed to have people to talk to who understand.



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