Since my son was 3 and my daughter was born their bodies have been in a tug-of-war with themselves their disease, and the medical community. Too many lab draws to count, so many tests your head would spin, and an over abundance of procedures, surgeries and treatments to keep them alive.
I've always had the reaction to it that you might think - I've been a protective mom when I had to be, a consoling mom when needed, and I've been the one who has had to instigate the pain as well, by holding them down, giving them painful shots and forcing them to disrobe and be seen by so many people that I literally cannot count. While I've tried to do it respectfully so they maintain their dignity at all times, I grow ever concerned about how they veiw and protect their bodies.
I've been thinking about that a lot lately as they mature and as we get more stable in our household. See, we're able to do more now than in the past 2+ years and so there is a lot of coming and going. Soccer practice/games, scouts, playing with friends, sleepovers and swim team, just to name a few. There are lot of clothes changing happening.
Because our life necessitated it, we've always been the kind of family that changes clothes in front of each other out of convenience, time-saving measures and less hassle. Bathroom doors stay open (well, for me and the kids anyway), and changing clothes into uniforms or practice just kind of happens. It mostly happens in our living room because we keep the kids uniforms downstairs away from their bedrooms, where we can keep up with them. We also help them change a lot. Fine motor and gross motor issues do that to a kid and their parents. We help them more than other parents have to help their kids.
I began thinking that the kids were a bit too open about changing in front of each other because they change anywhere because of how I handled it. But lately I don't think so. I think that their medical status just makes this type of thing (no modesty) easier for kids like mine. That makes me a little bit sad. They are so completely used to disrobing for medical professionals that they don't even register it as anything untypical therefore there isn't usually a hesitation. While luckily my son's modesty has finally kicked in, we've had to help our daughter recognized when to be modest.
I wonder how, as they move into puberty, how they view their bodies. Do they think of their bodies as just a place for medical procedures to take place? Like they don't really own their body and instead their disease does. Or as in our case, their new kidneys do because now, we're all about protecting those new kidneys -- we and the medical community says so all the time.
I suppose I could look at it the other way; that they were comfortable with their bodies and therefore less modest around each other, because it really didn't bother them to change with doors open and to run in and out of showers while they can be seen. The kids don't pay attention to each other and we make a point to try to get them to shut doors. But I think the fact that my kids have the medical history they do adds to my opinion that they don't really think of their bodies as their own.
I'm wondering for other kids who have medical special needs if anyone has noticed the same thing in their kids; a nearly complete lack of caring for privacy...
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.ReplyDelete
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.ReplyDelete
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.
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.ReplyDelete