tag:blogger.com,1999:blog-2959253662881047710.post5284610665474851579..comments2024-03-29T02:13:04.657-05:00Comments on Hopeful Parents: Bodies of Their OwnHopeful Parentshttp://www.blogger.com/profile/10998569368345552372noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-2959253662881047710.post-54052491109280599422011-05-13T22:28:12.000-05:002011-05-13T22:28:12.000-05:00Thank you both for your replies...I love to have b...Thank you both for your replies...I love to have both of your perspectives for knowing I'm not the only caregiver that thinks about that and also because I always learn from kids who were sick - and what they are thinking. So thank you.<br><br>Julia Robertshttp://www.kidneysandeyes.comnoreply@blogger.comtag:blogger.com,1999:blog-2959253662881047710.post-64792911833536361942011-04-25T11:19:42.000-05:002011-04-25T11:19:42.000-05:00Hi Julia! As a heart transplant patient who was si...Hi Julia! As a heart transplant patient who was sick since birth (officially diagnosed at age 9, transplanted at 15), I know that I do not view my body as a center for treatment. But I don't think the fact that I've had to have many-a-hands up my shirt to listen to my heart really affects how modest I am either. It's something I've accepted in the hospital. And in front of friends and family, I might be quick to change into PJs in front of them maybe. But really, what it boils down to, is that us kids just try to be normal. I try not to analyze my behavior as a result of my condition. After transplant, I never wanted to show my scar. I wore halter tops and crew neck shirts, and finally a decade later I started to show it little by little. Basically, as a 20-something-year-old, I need to show some cleavage to fit in, now! So I show what little I have :) We all adapt to the lifestyle we have, but we also try to fit in as much as possible. <br>But your posts are inspiring, and I know that it's really the parents who are overlooked and deserve the credit for taking care of their kids/patients.<br><br>Valeriehttp://www.hearttxxx.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-2959253662881047710.post-62994977559942737632011-04-25T10:59:49.000-05:002011-04-25T10:59:49.000-05:00Our 8 year old has to be catheterised every three ...Our 8 year old has to be catheterised every three or four hours; she also has no bowel control, and so has to have her bowels emptied. I always try to remember to ask before I do any procedures, but she has other people doing this for her, too; at school, in respite, and home care workers. Sometimes my grandchildren will sit and watch what I am doing, and I give them an explanation that they can understand. But yes, I wonder how all this will affect her as she grows up. She cannot dress or undress herself, either, nor can she bathe herself, so everything must be done for her. Do I make it a rule to shoo everyone out? Because of the amount of equipment required to care for her (hospital bed, hoist, shower chair, wheelchair, etc, she does not have her own bedroom, but we have turned our lounge room into her room. She has a big tv to watch, and often the grandkids are in there, watching the tv with her. Usually they pay no attention to what I am doing with her, I guess they are used to it.<br><br>Ruby McGillnoreply@blogger.com