You Hi, my name is Johnny Murtmuth.
I live over there.
I'm eight and a half.
I lived in a hospital a long time.
They did a movie on me.
I can't remember.
The reason Donnie doesn't remember is that he was only three and a half years old when the film was made and at that time had spent almost all of his life in the intensive care unit of Children's Memorial Hospital, undergoing more than a dozen operations, including the removal of a lung and a tracheotomy.
The ICU is constantly receiving admissions from elsewhere in the hospital, from the emergency room of very ill children and receiving patients who have undergone major surgery in the operating rooms.
Perhaps Donnie is too young to be influenced by these disasters and to make the transition feeling that this is going to happen to him.
And perhaps an older child might be more influenced by these events.
Perhaps also the ICU has become home to him and he really doesn't, does not consider what's happening, just considers this routine daily life.
Possibly he'll never get out of it.
You know, he's like the hope he would.
It's got a lot to do with your moods and it's like, you know, if you're feeling down then, you know.
Some days when he looks really good you think, oh boy, maybe this is it.
He's going to start coming around and then he has a little setback and you think, oh gosh.
He's got a chance to see a little bit of life.
You know, it seems to be a meaning for him to be alive.
If a baby is born and dies a month later, you know, what was the purpose at all for it? Well now you can say he has had some happiness.
When Donnie was first born the outlook wasn't very good.
We, besides all his physical disabilities, there seemed to be some question of his mental capabilities in the future.
Whether he would be blind and deaf and he is not any of those things.
He does everything any other child could do.
He is just kind of hooked up to equipment.
But the technology is there and we can use it.
At the time of Donnie's birth no one could have predicted what his future would be.
In fact, there is still some question as to what his adult life might be like.
There is a serious philosophic issue that relates to Donnie and children like him.
Donnie's progress has surprised, even amazed us.
How could we have predicted this outcome at the time he was born? Should someone have made the decision to let him die at that time? Of course we don't think so now, nor did the medical staff think so then.
Their efforts to save him were aided by Donnie's indomitable spirit.
At the age of eight and a half it is that same spirit that keeps him flourishing at home.
Music I asked Donnie how he was doing.
Well, you can tell I am getting better because I am at home.
I think you need family to get better.
Home care is better for children like Donnie with respect to growth, development and general life satisfaction.
It turns out that it is also much more inexpensive than care in the hospital.
You forget he has a handicap because he doesn't consider himself handicapped.
So when you meet Donnie you may first see all his equipment and his tracheotomy, but you only have to be with him a few minutes to suddenly not notice this because he has a very nice personality and he is happy and he is loving and he has a lot of good qualities.
Hi John.
You don't think of him as handicapped.
Donnie probably is our greatest joy.
He is a delight to be with.
He is a tremendous child.
I asked Donnie what he thought about the doctors that took care of him.
The doctors are good.
They saved my life almost.
I almost could die because they thought I would never talk or nothing so they thought I would die.
But then the doctors said no way, we have to save this kid and they did.
They saved my life and I think they can do that for our kids.
Do you remember anything about the hospital? Well, I remember some of my friends.
Their names are Benji, he is still there and Dores and me.
We used to be good friends and he was one of the nurses who used to call us the three musketeers.
Does your equipment keep you from doing a lot of things? I do pretty good and I can't run and I have to stand by there and I can't go outside.
My friends could.
They can skate and I have a knife that I am getting operated on.
It won't bend.
So I can't roller skate or ice skate or do many things.
But I think that mostly I can do more things than I can't.
So no.
Do you ever feel sad? Well, really I don't really feel sad.
I just feel sad sometimes when my friends make fun of me.
And when I just think back of all those kids in the hospital and I feel sad for them because they can't go home and do the things I can like Benji.
He is a home senior.
I care for him.
I think that people should help those people that are at the hospital come home instead of staying at the hospital.
Ironically, it is much more difficult to obtain the lesser funds for home care than the greater funds for hospital care.
Either from insurance companies or various of the government agencies that support care.
Another difficulty in arranging for home care is the so -called spend -down formula.
This means that the state would only provide financial assistance after the parents have been reduced to the poverty level by spending the bulk of their income on the child's medical care.
Since Donnie came home the electric bill has gone up probably 50 percent I imagine.
And we had to put a room addition on the house so that put another mortgage on the house.
And you are expected to pay that too.
Plus your taxes go up because you have got more living space.
Taxes almost doubled.
See I think parents could do some work but the doctors don't know that.
I think they could try it out.
See we, one time we had a meeting and we brought some kids home over here to see what, to tell them what it was like about.
The group is called Concerned Parents for Ventilator -Dependent Children.
And we all have ventilator or respiratory dependent children and quite a few of them are living at home now.
So we are trying to be organized and get funding for our children and get funding for other children to come home from the hospital and be able to live at home with their families.
I would like to have a group like that and I would like to tell people like, they will tell them about what everybody should do about the kids.
I think our faith and religion has helped us deal with Donnie's problems better than if we didn't have a faith or religion to believe in.
We pray a lot that Donnie will someday be able to function on his own and every day he seems a little closer to that goal.
Donnie and I have a faith in God and it has helped us to get through some of the crises that happened to Donnie.
He believes that Jesus will help him get through all his problems and every day he seems to get closer to that goal.
What is it like being home compared to the hospital? Well, I think it's better at home because at the hospital all you do is the nurse comes in to give you a shot and then all that stuff.
But at home you can do all sorts of stuff.
You can play, you can play games, you can watch TV and then on Fridays I go to school.
Donnie, can you tell us how to spell sling? S -L -I -N -G.
Can you make a sentence with sling? I, after I had my broken arm I had to have a sling.
You had a sling.
Alright.
Now we had another one.
I asked you how to spell the little girl's name Robin.
Do you remember? R -O -B -R -I -N.
Alright, that was good.
Now remember a noun has to be something you can see or feel.
What were some of the things that we had that weren't things that you could really see? What Donnie? Sound.
A sound would be a noun.
Can you think of something else? No, I can't hear.
Air? Air, that's a good one.
Sky, clouds, God.
Okay, but you could see a cloud, couldn't you? Yeah, it's kind of really feeling because it's like a ghost.
Yeah.
Right? We're like a ghost.
This pie has many pieces.
I can tell.
How many pieces in all? It's really nice being at home and having two of those.
Eight pieces.
How many pieces are colored red? Three.
So what fraction of the pie is colored red? Three.
Put down here.
Eight.
So, three eighths.
Three eighths of the pie is red.
Little Mouse Deer is eating fruit from the fruit trees.
Good.
I think I'll pick some more of those to take home with me.
How dare you take my fruit from my tree? Nine.
Do people ever get upset with you at home? Well, that's a very good question.
Yes, yes, yes.
Sometimes, see, I wrote a note that said, I wrote a note to my mom and dad.
It said, goodbye.
I thought they would understand that I was going away, running away because I wrote two notes.
And the second one I wrote to my sisters and brothers.
I said, I know I get on your nerves sometimes, but I don't mean to.
And then that night, that next night, my sister was thinking about that all day.
And when I came to say good night to her, she said, you don't get on my nerves.
And I said, what? And she said, about that letter.
And so, now, now, now, my name, they might tell the truth.
Have you ever run away from home, Donnie? Well, I have done that twice.
And what was your reason for running away twice? Okay, I sometimes feel like I'm not lying here.
I just don't.
You can understand that, Mom.
I really don't understand it, but it's just tricky being home and it's hard.
And so, I run away twice.
I hope you can understand that, Mom.
I understand.
Good.
Let me ask another question.
You said before that other kids tease you.
Yeah.
Can you tell me what they say? Well, okay.
Now, this is a good...
My friend got it to me.
Okay, I was playing at his house and he's like, no, I said, can we do something? He said, like what? I go, play basketball or something because he has balls and baskets.
And he said, you're boring.
And I'm like, what can we do? I'm like going, well, Sean, do you...
I think you're playing to me that I can't do things that other kids can do.
And he said, well, he's trying not to say it out.
He's trying not to hurt my feelings.
I'm like going, uh -huh, I can understand.
I see what you're saying.
Do your brothers and sisters spend time with you or do they think you're too much of a kid? I think they want to spend some time with me, but I feel sometimes like they don't want me.
And then I think, well, maybe they are.
And then, see, my sister, one sister, she plays cards.
We have bets, you know, who could win.
And she plays games with me and stuff, so I think it's nice.
Look what you did again.
No.
Uh -uh, you have to.
Come on.
No, you can't be a cheater.
Okay, uh...
This is a nickel.
No, no, put the black check because that's what you did.
No, I can't.
Come on, Jan.
You picked up the card.
Now can I put it? No.
When Donnie was in intensive care, he wasn't able to get out and play ball, or he wasn't able to go to the store to buy groceries or be outside with his brothers and sisters.
And he works on the race car with his brother in the summertime.
There's just so many things that he could never do that he can do.
He just needs a little equipment to do it.
A little extra tubing sometimes.
As a matter of fact, last summer his brother drives a midget racer, and once a year they have big wheel races.
Well, Donnie's got a leg that's stiff from IVs, so we got him a little cart that he can operate by hand, and we put a little carrier behind it for his oxygen.
And he's racing against kids from 8 to 12 years old.
The wheels on this one, every time he turns, his hands go around, the wheel turns three quarters of a turn, and the wheel is only about six inches compared to about a 16 inch wheel on a big wheel.
But he raced, he made the quarter of a mile.
He was last.
They were giving out the trophies when he came across the finish line, but he did it.
What is it you'd most like to be when you grow up? Well, I've been thinking about that, and I do want to be a race car driver.
But then I was thinking, if I don't have this trade gal or nothing, I can't do that.
So then I'm thinking about something else.
But I'm trying to get as close as I can get to a race car driver.
I would like to be a mechanic or a owner of this.
And I think, you know, I think it would be nice.
I'm not sure what I want to be, but that's my decision.
The question of payment for home care for children like Donnie should be an easy one.
Since care is more inexpensive at home, reasonable people will find a means to provide the funding without reducing the parents to the poverty level.
It's a wonderful privilege to know Donnie.
Rather than giving, one takes.
The end result is to feel a little bit prouder to be a member of a society that cares.
The end result is to feel a little bit prouder to be a member of a society that cares.
Thank you.
