The ups and downs of living with brothers or sisters who face disability or heartache every day of their lives, as told by nondisabled children in the same family.
Barbara:
It isn't easy to live in a family like mine.
Oh, I love my family and stuff, and I get along great with my parents, but I hate having to live with this feeling of uncertainty or fear each day. See, I have a little brother, Johnny, who is dying (he is ten), and he has had more in the way of heartache in his young life than most people do in their ENTIRE lives!
Johnny has a neuromuscular disease, muscular dystrophy, and it is getting bad; he is starting to have breathing problems, and he is now on oxygen at night. The bad thing about all of this is this: Johnny's disease is incurable, and it is fatal. In fact, the doctors at the local muscular dystrophy clinic don't think that my little brother won't live to become a teenager, and that is sad because he has less than 3 years before he will become a teenager. That isn't much time left, and frankly, I am NOT ready to say goodbye to my little brother! It isn't fair that a loving little boy like Johnny has to suffer so needlessly!
I am especially fearful nowadays because Johnny has had recent "spells" of breathing problems, and he also has seizures; and I often wonder if and when he has his next spell that he is going to die on us; and I don't want to EVEN think about that!
Stephanie:
It IS hard living with a brother like Johnny because you never know what the next day will bring, but let's face it: Johnny is STILL alive, and we should be dwellling on THAT instead of thinking of what is going to happen!
The problem I have living with a brother or sister with special needs is when kids stare at us or say comments that are anything but nice. All the time I hear of a kid calling my little brother, Jo-El "Nasty" because he is heavily scarred from burns, and he also has prosthetic hands; and Jo-El is such a sensitive child, and I am afraid what these comments will do to his tender little feelings. He is just a young kid; he doesn't deserve all these nasty comments, like being called "Monster" or "Monkey Boy" or whatever! If anything, he deserves our compassion and our SUPPORT!
I also have problems with seeing my sister, Ronee', suffer in pain each and every day. She has juvenile arthritis, and she is facing knee replacement surgery in a few weeks, and she is scared and upset. But what is worth more? The surgery, which will relieve her pain, or seeing her suffering as she she struggles to walk on her crutches, only to fall, when her knee gives out yet again??
Like Johnny, Ronee' has been through so much. Yet she still remains the little trouper, and she refuses to give in to her disabilities; she is a child of courage and determination, and at times I wish I had her spunk and her will!
Michael (who has epilepsy, but is otherwise healthy, and is the younger biological brother to Stephanie):
Seeing all these kids with their disabilities was, at first, oftentimes disconcerting and daunting, but as I got to know them, one by one, I soon no longer saw the disabilities, but the KID only; and I found out that they were a LOT like me. They were fun to be with, and they liked or disliked a lot of the same things I did. Sure, I know they are disabled, but they are my brothers and sisters first, and their disabilities SHOULDN'T matter to people! They are only a SMALL part of them; that is NOT what makes them THEM, and people should learn to see them BEYOND their disabilities and see the REAL person INSIDE!
Tammi:
All I see are a bunch of kids who are my brothers and my sisters, nothing more. Case closed.
Gemini (who, like Michael, has epilepsy, but is otherwise healthy):
AMEN, Tammi! Now WHY can't more people say that or learn to accept our disabled brothers or sisters????
Danita:
It takes used to getting to know our family because there are so many kids, and there are so many kids who are handicapped, but to me, they are kids first, and their disabilities only makes them more unique and interesting! I see nothing wrong with them, and I am glad that my mom and dad took them in and loved them like their own; and I am glad that they are my brothers and sisters 'cause you never asked for a better group of brothers and sisters in your life!
Porter:
Those who treat my brothers or sisters different because of their disabilities are really the DISABLED ones because they don't know how to be nice to them, and they are only showing the world just how stupid they really are inside! All it takes is a little common sense to be nice to my disabled brothers and sisters; this is something that really can't be taught, and it is something that one must learn on their own!
Heather:
Whoever treats my brothers or sisters wrong because they may look or act different is dumb. It is wrong to treat them bad just because they aren't like me! They may be different on the outside, but on the inside, they are just like me, and that is what I like!
Awwwwwwww!! Karen..you are amazingly talented..to write like this.....and you have a heart of gold sister!!
I am so thankful for not having any disability...only a double broken heart...!!
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Barbara:
