A teenager writes of the challenges of having a sibling with a devastating physical disability that has affected just about every aspect of her life.
On top of the physical problems, Jodie, the younger girl (the subject of the story below) is also severely and profoundly mentally handicapped.
I have no problems, really, with having a younger sister like Jodie (Jodie is twelve, nearly three years younger than me--I'll be 15 in a little over two months from now--), but many other people have problems dealing with her whenever they see her.
Jodie is a very sweet kid, with a very outgoing and happy personality, but she makes people uncomfortable because she is so severely handicapped. She was born with severe brain damage, and at the age of one year, back in her native Korea, she was diagnosed with spastic quadriplegic cerebral palsy, which has affected her entire body. She is in a wheelchair, and she will probably never be able to walk on her own, let alone, do much of anything. She is just too severely handicapped to be able to take care of herself; and this is why we often have to help out with her care.
Some of the things we have to do for Jodie include bathing her, getting her dressed, feeding her through her stomach tube (or through a nose tube if she pulls out her stomach tube or an I.V. bag that we fill up with her feeding solution, connect the tubing to the bag, and put the I.V. line in her arm or to her stomach tube, where it can then go directly to her system or to her stomach), suctioning her lungs (so she doesn't choke; she can't swallow; if we don't do this, she could get very sick in a hurry or could choke to death in a matter of a few short moments), changing her diapers when she wets or poops herself (she isn't toilet-trained), and fixing her hair. We also have to physically put her in or take her out of her wheelchair many times each day; and it can be tiring, exhausting, backbreaking work at times. Taking care of a child like Jodie requires a lot of patience and ingenuity because so much can go wrong in a few short moments; and when things DO go "wrong", we have to be on the alert and try to help her through whatever crisis she may face. She also may have seizures; and we have to deal with THAT, as well.
I have told several of my friends about my sister, and all my brothers and sisters who are handicapped; but many won't watch them when maman or daddy go out; so I am the one who usually has to end up taking care of them. "Being around sick kids makes me uncomfortable", I have heard them say to me time and time again; and it really makes me mad because even though they may be "sick" or "dying", the kids they are referring to are MY brothers and sisters, and they are a LOT like them, more than they may realize! My brothers and sisters may be "sick" or "dying", but they have feelings, too, just like anyone else: they laugh, they cry, they feel emotions too, just like anyone else does who ISN'T disabled. Sure, they may not be able to express themselves as well as say, I, do, but they CAN express themselves, even Jodie! Jodie lets us know, in NO uncertain terms, just how she is feeling. She can say a few words, and she also can communicate by using a "Bliss board", which has symbols or pictures that she can point to, and she can answer very simple questions with a grin or a shake of her noggin; and we can tell just what she is saying, what she wants, or how she happens to be feeling. She may be retarded to most people, but I happen to think that she is VERY bright!
Still, it IS a drag at times when I want to go somewhere with my friends, like to the mall, or go ice skating at the pond not far from our place, and I usually end up having to babysit Jodie or any of my other brothers and sisters who have disabilities. Sometimes I feel like my parents depend on me way too much; and I wish that they would give some of the babysitting duties to one of the other kids, like Steffi or Summer, for instance! And being around a kid like Jodie all the time CAN get on my nerves. Jodie is very noisy at times, and sometimes she wakes me out of a sound sleep with her coughing or her squeals; and then I get scared because I think she's fallen out of her bed or is choking on her saliva; and then I have to go over to her room, turn her onto her side if she's rolled over on her back or stomach, make sure she is breathing okay or that her face isn't pale or blue in color, and make sure that she isn't seizing or having a fever or a spell of pneumonia or a cold. I then suction her, or I check her diaper, to make sure she is dry and not poopy; and only after I make sure that she is okay, I can go back to bed and TRY to get back to sleep again!
Now, I am NOT complaining about Jodie (I'd do ANYTHING for her; and she is a great little sister!), but I just wish at times she were more "normal" and didn't have ANY special needs to speak of! I wish she could talk, walk, or do more than just lie there or sit in her wheelchair and make noises or say only a few words or didn't have to eat with a tube or wear diapers. She may be going on 13 years old this year (she'll be 13 in July), but she is more like an infant, and at times it can get awfully embarrassing if I have to explain to others why Jodie is the way she is or defend her if she does a stinky loadie in her diapers and not have people turn away in disgust or look at her like she is in some freak show whenever they see her in her wheelchair or see her skinny, tiny body or her tubes if she is eating. It's bad enough she is in a wheelchair and has to be strapped in like chuck so she doesn't fall out and hurt herself (she doesn't have much muscular control; she can't sit up by herself) or when she has one of her seizures, which are always frightening to see; one thing she DOESN'T need is more stares or more inane, stupid comments from nosy people! Jodie is a KID with FEELINGS, not some inanimate object to be stared at or pitied!
If there was ANYTHING I DO wish for my little sister, I wish she were NORMAL, like me. Having a sister like her is NOT easy, and I wish she could be able to care for herself or her needs and NOT depend on others for her needs! I wish she were able to walk, talk, feed herself, or go to the toilet on her own; and I wish that she wasn't mentally handicapped! That is probably the biggest wish I have for Jodie; but for now, I have to learn to love her and accept her for the way she IS and focus on her GOOD qualities that are INSIDE and NOT focus on what is on the surface, even when her problems ARE so obvious to others once they first see her!
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Reviewed by Simon Thurlow
1/13/2004
Giving voice to those who have none as usual. Way to go Karen
A heartfelt write....but maybe she is the way she was meant to be so others could learn that there is no such thing as normal...it is only a depiction in our minds. Love this write. You are a great sister - you care!
Hello Karen,
Once again you show considerable empathy with your subject. Your writing has that ring of truth about it,
Like always you show that depth of understanding in dealing with your subject. Good writing Regards John W
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