Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 Hi Robyn: I don't know that I have any answers for you but I want you to know that I'm going through the same concerns right now regarding my unaffected boys. We too, have initited a DNR for my youngest son, Kirkland. In my case, I've recently told my older two sons Evan 10yrs, and Carson 7yrs the entire details about their baby brother's prognosis. He's had severe respiratory issues since May and he's come close to death a few times. Of course, I realize that my boys are older than your 2 year old and they handled the discussion fairly maturely. Your little one would need to have things explained in age-appropriate terminology. I've done a fair bit of reading lately about losing a child and sibling. It's really helped me understand how kids perceive illness and death and also made me realize that it's okay for my boys to see me mourn as long as I'm honest with them and explain that I need to do this to be able to deal with Kirkland's health. Of course, I don't constantly want them to see me sad or worried so I do often wait til I'm alone to release pent-up emotions. They do need reassurance that this is natural and doesn't mean they've done anything to make me upset but that I simply need to let it out. I've often drawn parallels to incidents in their lives when they've been upset and needed a good cry to get it out of their system to help them relate. A few books I read explained illness and death through the eyes of the different age groups ie) toddlers, preschoolers, 5-7yrs etc. I found it quite helpful for me to know what my boys might be experiencing and how we could share our feelings through conversations. This has opened up all sorts of opportunities to talk about how people react when someone is really sick or dying. Interestingly enough, 2 year olds do grieve in their own way. I think the key might be to explain honestly and openly in child's terms why you're sad or crying or angry or whatever...this way your little one won't think it's because of something he/she did. Everything I've read claims that it's better not to cover up or hide details from siblings of sick children. They know when something's not right no matter how much of a brave face we put on. They actually feel more secure when they know the parent's being truthful and then they're more apt to deal with things better. Are you hooked up with a palliative care team who could share some resources with you or at least a list of book titles? Perhaps you've already explored this route...I have a list I can share if you don't have support. There are lots of story books for young ones that create opportunities for discussion plus there are tonnes of adult books from which you might get some guidance. This in turn, might allow you the freedom not to always have to be strong for your little one- to not feel guilty for having to release the tears in front of him/her when you're not coping very well. In my case, I always struggled to keep things "normal" in our home. Now, we talk about how our family differs from others and I admit that things at our house aren't "typical" but that's not necessarily bad. This includes our emotions as not being typical as well... but there's nothing wrong with that either. They understand that it is healthier to express one's pain than to hold it in. My thoughts are with you and I'm always here if you need a shoulder. I pray that things might be a little brighter for you. Take care, , mom to Kirkland almost 4 yrs, Complex One Deficiency Robyn wrote: Hi, my name is Robyn and my 5 year old son has severe mito. He has been diagnosed as teminal and was given less than a year 18 months ago. Nobody I know understands and I guess I just need to talk about it and ask how other people deal with it. My 2 year old seems healthy, which I am greatful for, but looking at Peyton breaks my heart. He is completly immobile, has never been able to even hold his head up. He didn't smile for the first time until he was 14 months old. He had a two and a half hour long seizure a little over a year ago and has since lost everything he did have. He can't smile anymore or even cry. Everytime he gets sick, the doctors try to prepare me for the worst. He has had pneumonia 3 times in the last 6 months and his temp has been as low as 93 degrees(rectally). My ex-husband and I signed the DNR papers because he has no quality of life, But I know he must be miserable and I feel so helpless. I try to be strong for them, but it is hard sometimes. How do I stay strong for my younger child while I watch my older son deteriorating? Do you Yahoo!?Send a seasonal email greeting and help others. Do good. Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 Hi Robyn: I don't know that I have any answers for you but I want you to know that I'm going through the same concerns right now regarding my unaffected boys. We too, have initited a DNR for my youngest son, Kirkland. In my case, I've recently told my older two sons Evan 10yrs, and Carson 7yrs the entire details about their baby brother's prognosis. He's had severe respiratory issues since May and he's come close to death a few times. Of course, I realize that my boys are older than your 2 year old and they handled the discussion fairly maturely. Your little one would need to have things explained in age-appropriate terminology. I've done a fair bit of reading lately about losing a child and sibling. It's really helped me understand how kids perceive illness and death and also made me realize that it's okay for my boys to see me mourn as long as I'm honest with them and explain that I need to do this to be able to deal with Kirkland's health. Of course, I don't constantly want them to see me sad or worried so I do often wait til I'm alone to release pent-up emotions. They do need reassurance that this is natural and doesn't mean they've done anything to make me upset but that I simply need to let it out. I've often drawn parallels to incidents in their lives when they've been upset and needed a good cry to get it out of their system to help them relate. A few books I read explained illness and death through the eyes of the different age groups ie) toddlers, preschoolers, 5-7yrs etc. I found it quite helpful for me to know what my boys might be experiencing and how we could share our feelings through conversations. This has opened up all sorts of opportunities to talk about how people react when someone is really sick or dying. Interestingly enough, 2 year olds do grieve in their own way. I think the key might be to explain honestly and openly in child's terms why you're sad or crying or angry or whatever...this way your little one won't think it's because of something he/she did. Everything I've read claims that it's better not to cover up or hide details from siblings of sick children. They know when something's not right no matter how much of a brave face we put on. They actually feel more secure when they know the parent's being truthful and then they're more apt to deal with things better. Are you hooked up with a palliative care team who could share some resources with you or at least a list of book titles? Perhaps you've already explored this route...I have a list I can share if you don't have support. There are lots of story books for young ones that create opportunities for discussion plus there are tonnes of adult books from which you might get some guidance. This in turn, might allow you the freedom not to always have to be strong for your little one- to not feel guilty for having to release the tears in front of him/her when you're not coping very well. In my case, I always struggled to keep things "normal" in our home. Now, we talk about how our family differs from others and I admit that things at our house aren't "typical" but that's not necessarily bad. This includes our emotions as not being typical as well... but there's nothing wrong with that either. They understand that it is healthier to express one's pain than to hold it in. My thoughts are with you and I'm always here if you need a shoulder. I pray that things might be a little brighter for you. Take care, , mom to Kirkland almost 4 yrs, Complex One Deficiency Robyn wrote: Hi, my name is Robyn and my 5 year old son has severe mito. He has been diagnosed as teminal and was given less than a year 18 months ago. Nobody I know understands and I guess I just need to talk about it and ask how other people deal with it. My 2 year old seems healthy, which I am greatful for, but looking at Peyton breaks my heart. He is completly immobile, has never been able to even hold his head up. He didn't smile for the first time until he was 14 months old. He had a two and a half hour long seizure a little over a year ago and has since lost everything he did have. He can't smile anymore or even cry. Everytime he gets sick, the doctors try to prepare me for the worst. He has had pneumonia 3 times in the last 6 months and his temp has been as low as 93 degrees(rectally). My ex-husband and I signed the DNR papers because he has no quality of life, But I know he must be miserable and I feel so helpless. I try to be strong for them, but it is hard sometimes. How do I stay strong for my younger child while I watch my older son deteriorating? Do you Yahoo!?Send a seasonal email greeting and help others. Do good. Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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