In honor of Mother's Day, May 12, and Father's Day, June 16, several parents who have neuromuscular diseases have shared their thoughts on the challenges and rewards of having children. For a personal perspective from the author of The Joy of Parenthood, see "From Where I Sit" by Jan Blaustone (in print version only).

The doctors were very supportive of my pregnancy, except they knew right from the get-go that it was going to be tough on me. I had already had two spinal surgeries. With the added weight, I ended up in bed rest from the sixth month of my pregnancy. Both of my kids were delivered by Cesarean section at seven and a half months, under general anesthesia.

We knew that any child that we produced would have a 50 percent chance of having the gene for spinal muscular atrophy. There can also be one of those things that can happen to anyone, whether you have a disability or not, and, unfortunately, that happened to my daughter, who was born with cerebral palsy.

It took about three months to recuperate from not only the physical strains of carrying the child and trying to get my own body back into as much shape as my muscles would allow, but also from surgery.

It's just like with anything, you figure out how to do things yourself. I wasn't stupid and I knew that when there were things that I couldn't do, to ask for help. When they were younger, I was able to lift them and carry them independently, and pick them up from the bassinet or the crib to change or feed them. I was a lot more ambulatory then, more steady on my feet.

My daughter is totally dependent. She's nonambulatory and nonverbal, and she uses a computerized, augmentative communications device. My daughter is the biggest reason why my back is finally slipping, and last year I had to have some more fusion work done.

It gets to be quite an ordeal, but they're worth it and I would never trade them for anything in the world.

Kristopher is a part of everything we do. For his first presentation in front of the class, he gave a report on tube feeding because his sister is tube-fed. He took a doll and some feeding tubes and gave his class quite a show on tube feeding. The teacher was very impressed.

I have been separated from my husband for three years. My divorce was finalized last year. Even when I was married, most of those days I felt like a single parent. My ex-husband was trying to cope with everything that was going on with me and then when our daughter had CP, it became too much.

Last year when I had two spinal fusions, I had to be in a body jacket that continued down my right side and kept me at a 30- degree bend at the hip for six months. With surgery of that magnitude, there's always a big risk.

I thought, OK, I have to put my life on hold for at least six months, and who is going to take care of the kids and who is going to make sure they go to school and get home from school and who's going to help them with homework and the grocery shopping? My fiancee, Rod, really picked up the ball. My mom stayed with us for a while when I was in the hospital. It was driving me crazy, being here and having the jobs I did as "Mom" being done by someone else.

If you have a neuromuscular disease and you're considering having children, you've got to be very aware of your body and what it's telling you. I know when I'm feeling tired and when I'm doing too much and I know that it's time to stop. I know the risks that can happen if I don't.

There's a strong possibility that you're giving up your independence. Not just in the sense that you now have someone else in your life, but also in the physical sense. People with neuromuscular diseases, their bodies may not be able to recover after pregnancy. And giving up their independence may mean they can't go out at all; it may mean that if they were ambulatory they're now going to be in a chair.

I would encourage everyone to fully investigate or volunteer working with young children or infants, and see what it's like picking them up, holding them. Are you physically going to be able to do it?

I work at home, doing the accounting and the payroll and the taxes and all that stuff for the business. My wife does most of the day-to-day operations and more of the stressful part.

I found out I had Becker muscular dystrophy in the spring of 1992. It was found that I had a very severe heart condition and the disease was attacking my heart more than it is my legs, unfortunately.

Our daughter had already been born at that time. We consulted with MDA and had some genetic counseling and it appeared that, if we had another child, it would not be at risk since my wife is supposedly not a carrier. We decided, "Let's go ahead and have another child."

I work very hard trying to raise my children, spending a lot of time with them. I can still walk pretty well. I have trouble with stairs, but a lot of days, I pull myself up the stairs because my son or daughter will be upstairs and I have to keep an eye on them. By the end of the day, I'm tired.

My daughter is a little more grown up, but my son is very lively, he is just wild. It's made me work with them to keep things picked up, because it's very difficult for me to bend over and pick up stuff.

My daughter is very aware of my disability. She witnessed me fall down the stairs a couple of times, and I was hurting. She came running and brought me one of her little blankets. She will help me up the stairs sometimes - grab hold of my hand and tell me to be careful and make sure to hold the railing. She's just a very positive force for me. She wants to help out with MDA fund- raising to help me and all the children also.

I communicate with Kari frequently about what I go through and how my legs hurt. Some days when I'm not feeling so good, I tell her, "I'm sorry, but my legs aren't feeling too good today. I can't do this with you right now." She says, "Oh, that's OK, Dad, we'll do it some other day."

I have my limitations, especially with the little one. We do a lot of things on the floor instead of me carrying him around. It's hard for me to give him a bath, so my wife gives him a bath.

I realize my life expectancy may be short because of my heart condition. I consider every day as a gift and I realize I'm so lucky to have such wonderful children. It's made me just appreciate every day and not take any day for granted. I'm thankful my children are healthy and that it's me who's afflicted instead of them.

I think this whole thing has made me a better person. I'm 38, I've had dystrophy all my life but not as severe as some of the youngsters who get it when they're so young. I feel like I've lived a good life at 38.

I told my daughter that my doctor told me my heart can hold out another five to 10 years, and they expect I'll have trouble or need a transplant. We've talked about how I'm going to get a new heart someday. I've worked with her so that, if I faint or have a heart problem, she can call 911. She knows her address and everything and can explain what's happened to her dad. We've tried to prepare her for every situation that might come up.

Parents with muscular dystrophy definitely need to tell their children about death. They can say, "Hey, it may not happen soon, but it's going to happen to us all eventually. There's no escape from that reality."

I have to enjoy my children as much as I possibly can now, and that's part of the idea of keeping me home with the kids so I can spend an awful lot more time with them than most parents would be able to. If I don't get around to my stuff, that's fine, the kids come first.

During my pregnancy I was going through a lot of stress, and it took a big toll on my system. I started to have a little limp. A few months after Holly was born, I went to the doctor and got a diagnosis (of facioscapulohumeral muscular dystrophy). There were a couple of times when I was walking barefoot and I fell with her in my arms, and that's one of the things that prompted me to go to the doctor.

After I had her, I left her father. I was dealing with a new baby and a new disease. It was pretty rough. I've had help from my family, and sometimes they would take her on weekends. But I've lived on my own with her almost all the years.

When she started being able to walk, I couldn't run. So she got the idea, "Oh, Mom's not going to chase me and I can run away." I remember times when I was really scared, she'd get out the door and just take off, and nothing I'd say could make her come back. I used to have to go to the neighbor's apartment and knock on the door and say, "Could you go get my child?"

You also have to learn how to discipline verbally and by showing the consequences and taking stuff away. There've been times when I did feel Holly deserved a spanking, and it's frustrating not to have the strength to do it. I

have to watch how I eat, take my vitamins, get a lot of sleep. Holly wants me to do things with her like go to the park or take the dog for a walk, but with school I'm so tired it seems like I hardly have time for those kinds of things. She doesn't mind, even if I went outside and sat on a chair and threw the ball for the dog, as long as I made an effort to be with her without anything interrupting like the computer or the telephone or my studies or the TV. My attention is more important to her than what I can do physically. I

worry about what her friends are thinking and how she feels and how it's going to affect her. I hear her say sometimes, "Why do I have to have a mom with MD?"

Holly seems to be very protective of me. She does help me but she kind of resents it.

She worries about me dying on her because I am the only parent she has. I try to make her understand that I'm going to be OK, it's not something I'm going to die from, at least not now.

Being a single parent, going to school, raising her, I feel like I have to be perfect at all those things to compensate for the MD. If I'm not careful, I can take too much on my shoulders.

My doctor said he could check her (for FSH) but I'm kind of afraid to do that because I think she might get an idea that it could happen to her and I don't think she has that idea yet. I want to avoid that until we actually have to deal with it. But there's things that I couldn't do at her age, like cartwheels and blowing bubble gum and whistling - she can do all of them so I'm hoping that maybe she will be OK.

I'm glad I didn't know when I got pregnant (that I had MD). I think I would have been afraid and I wouldn't have had the pleasure of having her. I'm not quite sure how I feel about having a second child; it depends on the future, a cure, all those things. Each child that I have would have a 50-50 chance of acquiring FSH.

Having my daughter gives me a reason to keep going instead of just getting depressed and quitting. I've got someone else to go for, to do things for. I don't think I would have done as well if she hadn't come along. It's a great inspiration.

We got married in 1982, and for the next four years I was in college and we decided to wait to have any children until after I was out. We talked to the doctor a little bit about the genetics, and we did take all those things into consideration. I

couldn't pick up my kids when they were little and carry them around and that kind of thing. With limb-girdle muscular dystrophy, the stamina is not there. Getting up at night was pretty much out for me. It definitely put more responsibility on my wife.

Once my children got to the point where they could put on their own clothes and get around on their own, it certainly made it a whole lot easier. Before, when my wife wanted to leave and I was supposed to take care of the children, that created kind of a burden and caused me some anxiety. Now, if she wants to take off and have a little time to herself, she can do it much easier.

It was tough when I had to pick them up when they had a messy diaper and get them on the changing table and that kind of thing. Actually, once they were a year old or so, they could kind of manipulate themselves with my help. It's amazing how children will adapt, too, if they know they have to.

I can throw the football with them a little bit, but I just don't have the stamina to even really do that anymore. But now, I see these boys who are 7 and 9 and they play together real well. I look back and think my dad was healthy and he didn't play with me that much, and I didn't turn out too bad. It's not really any big deal.

The important things in child rearing are to have a stable home, one where they know that they're loved without a shadow of a doubt and have the security of two parents that can provide all the emotional support they need. Sitting down and reading with them and working with their school work and those kinds of things mean a lot to the child. Both boys went into the science fair and I worked with them on their science projects. Those are the kinds of things that are going to build memories.

There are parents that are healthy and don't do a lot of things for their kids that they could and should do. I feel like, well, this muscular dystrophy isn't really standing in the way of all that. In fact, they may be better for it, because I also ask them to help me. I'll ask them to pick things up for me or whatever, so they're learning how to work in the process.

We play table games and those kinds of things for fun. On a Friday night or a Saturday night, we usually go eat out together someplace.

I try to take a day at a time, but I think about, 10 years from now, I may be pretty much physically disabled. In another 10 years, my boys are going to be 17 and 19. Hopefully, by that point, I'll have given them the necessary tools to succeed in life. The emotional support and the love - that's stuff you can't buy, you can only give it and it's worth a lot.

At this point, I believe they have totally accepted my disability. If I accept myself and I look like I'm a strong person emotionally, those kinds of things are going to outweigh the negative of being physically weak.

The thing they've added to my life is the joy of giving, the joy of being able to share some of your thoughts and ideas and values with another human being. It's neat to see them start to repeat some of your values that you've been trying to instill in them. You can see yourself in them and it gives you a sense of pride. When they've accomplished something, then you know you've helped them accomplish it.

My husband and I had been trying for six years to get pregnant. I got pregnant the day after they told me I had ALS. So it was quite a miracle.

My original neurologist was not at all supportive or happy about my pregnancy. He basically was telling me to terminate. He said that a lot of women wouldn't want to bring a child into the world who was basically going to be raised motherless. And that's when I decided he wasn't my neurologist any more.

It's been a life saver to me. Every day I wake up and I don't think, "Oh God, am I dying?" I look at my son and he makes me laugh.

The pregnancy was perfect. What was so miraculous about this whole thing was the window of time. If I got pregnant now, I would definitely need help along the way. This was right at the time when I still had a lot of leg strength to carry the weight and enough muscles to get him out of there.

Now the disease has progressed enough to where I'm unable to lift him. Up until he was 6 months old, I breastfed him and then I went on a BDNF drug study so I had to stop. Since then that kind of stuff has been more in the hands of my husband, although it is my job to feed him every day, which is actually quite funny, trying to aim for his mouth.

Curry makes this whole thing possible. He changes Daniel, he dresses him, he bathes him, he carts us both around. I don't know where he gets the patience but he's pretty incredible. Curry works with Encyclopaedia Britannica as an area manager and sales rep so he's able to be very flexible on when he works. Daniel and I go along with him in the car. I have a cellular phone out there and I have the phone number where he is inside the house so I can call him. We're thinking about getting an adapted van that we can put sort of a play area in for Daniel.

When we first had him, I had this fear that he would know that I was different and that he would not bond with me, but they're just so adaptable and they love you for who you are. I guess I associated being a mother so much with the action, changing a diaper and so forth. It's almost as if I'm half sister, half mother, because he and I are always being pulled around by Dad.

At this point, life is just wonderful. We laugh together all the time. I sense that he does know that I'm his mom. So it really has been eye-opening and humbling to me to see the love there.

What I wasn't really aware of was just the everyday miracle of having a child in the house. Instead of just the sound of the TV or silence, it's so cute to hear him laughing and talking to himself. I find it wonderful medicine for me.

We have a baby carrier that we strap under my chest and he sits forward in it rather than facing me so he rides on my lap on the scooter. And he loves that, and I hope that he grows up with a feeling of comfort and security from having been on my lap.

He makes the doctor visits a lot more fun. You take him in there and everybody's laughing and playing with him. It could get kind of gloomy at times. I look at those people in the waiting room and some of them you can tell have no hope. But I have hope because it lives with me every day.

Children are not raised only by the mother. They're raised by a family. And the thought of leaving part of yourself behind is a comfort.

My obstetrician was so supportive; he had dealt with another woman with ALS who had a baby. He was very realistic but he was all for it. He said, "It doesn't matter if you live a month, a year, or five years after this child is born. You'll be glad you had the baby."

I didn't know I had Charcot-Marie-Tooth disease until my son was born. I got a physical at work, and they said I had a spastic gait. I went to the Veterans Hospital in 1981 and got a name for the condition.

We had a little concern about having a child with CMT but not much. My wife wanted another child, and our daughter was born in 1986.

My children aren't affected by CMT, but they may not be affected until their mid 20s. My father had it and it wasn't diagnosed; he died of other causes. Mine is worse but it's more of a nuisance than a disability.

My son thinks about it. I think my kids are better prepared for it. They know it's hereditary. They see me functional and active, and I think I'm a good role model.

I don't notice many challenges with parenting. I feel bad asking the kids to do things for me but they're willing to do it.

I had no problem picking up and handling the kids as infants and toddlers. My biggest problem is balance. I'm ambulatory but I use a wheelchair when I'm going to be on my feet a long time. I get lower back pain.

It bothered me a little that I could not play ball with my son. But we try to do other things instead. We go on trips, or go shopping at the mall with Chris' friends. Some kids wouldn't want Dad along, but he doesn't mind. He pushes me in my wheelchair at the mall or amusement parks. He feels needed.

The only problem is, when I scold my son, he knows I can't chase him. Thank goodness for my wife.

It's a challenge to be a parent, whatever the circumstances. There's no owner's manual.

Alyce Lockwood, age 9

I'm my Dad's maid. No, I'm kidding. I go and get things for him. I rub his shoulders, bring his shoes, get him a drink of water, open his sugar packet when he has coffee. No, he's not lazy!

I told the kids at school that my dad has crooked legs and I told them not to laugh about it.

We hold his arm and hand so he won't fall. If I have a child, my child would help me, too, if I had crooked legs.

My Dad and I like to play games and snuggle. My most favorite fun thing to do with him is play games on the computer and the goofy golf machine and take care of our two dogs.

God made him that way so I could help him. He's not different from other dads, he's just my favorite dad.