When we finally figured out what was going on, I had to sit my sons down and say, “this is what the disease is. We don’t know what’s going to happen, but these doctors are going to do their best.”

My name is Marie. I’m 44 and my boys are Joe, 13 and Jack, 11.

Before I had children, I was living in San Jose, California and I was worldwide sales manager in the high tech dish industry, flying all over the place. I got married at 29 and about 30 I started getting the bug to have kids. About a year later, I got pregnant. I really, really wanted this child. I thought that life would go on as normal. I assumed I would go back to work. I went back to work when he was three months, but I stalled on traveling. When I had my second son, I changed jobs.

What initially surprised me after the birth of my first? How much love I could have for this little being. I would flash-forward to all these points in his life and how I thought it was going to be. I pictured him at his high school graduation and all these things that we were going to do together. It certainly hasn’t turned out that way.

Two years later, I had his brother, Jack. He went into the NICU as soon as he was born. It was two years before we discovered what was wrong with him. They thought he had cerebral palsy. So we had all these various therapies. Then Joe, his older brother, started running funny and kept complaining of hip pains. Long story short, we went to all these doctors and they finally said, “let’s test him for muscular dystrophy.” They tested both and Joe, the older one who was doing well, was two times the normal level. One doctor looked at us and said, “you have major problems now.”

I was in shock. Joe was the boy who was going to take care of Jack. All of a sudden, things you think are important are not. The health of a child is the greatest gift you can ever be given.

There are 40 different diseases in muscular dystrophy. In their cases, they are losing their diaphragm muscles, both of them. Joe is weaker in the hip to back; Jack is weaker in the upper body. Muscles atrophy and you start to waste. Both of them have breathing difficulty. They are weak. Joe, the older one, is in a wheelchair at school.

From the moment Jack was born, we got hit head on that something was wrong. But when they said Joe’s probably worse off than Jack, we were both devastated. My husband fell apart and I went into the mode of talking to doctors across the country. I was sending the records and pieces of muscle to other places. I went into war with this disease.

When we finally figured out what was going on, I had to sit my sons down and say, “this is what the disease is. We don’t know what’s going to happen, but these doctors are going to do their best.” My older one has pretty much signed on with these doctors. He’s said, “I’ll do whatever to keep healthy.” Whereas my younger one is extremely resentful and just tired of it all, tired of doctors. We take it year by year. I’ve been very open and honest with them. They’ve asked me if they could die, and I’ve said “yes, but we could all die.” But they can die from this disease.

Professionally, my husband and I, we were always equal, both of us in sales. Once I had Joe, I no longer wanted to do what I had done. My husband kind of felt I had changed the plan, but until you hold that baby in your arms, you don’t know how you’re going to feel. It’s put a little friction there. With the diagnosis, he hasn’t felt he could be the main breadwinner and let me stay home with them, so there’s been a lot of sadness on both sides, just trying to figure out what is the right thing to do.

Becoming a mother, all of a sudden, you now want to be with other women who have had children and who want to raise their kids in the same way you do. You no longer can relate to your friends who hang out in bars and go out. I now admire women who have raised good kids who have strong values and become good citizens.

Joe has had to face changing schools because his earlier school couldn’t deal with the fact that he couldn’t write because he had lost muscle-use in his hand and they couldn’t make the accommodations that he needed. He got moved in 5th grade. He then had to go into the school and tell kids that he was sick. He’s had to hold his head high. He was actually out of school for a month in December and then he chose to go back to school in a wheelchair and part-time because he gets so tired. He’s had to try to have a normal teenage life while fighting this disease. In Jack’s case, he had to start school with braces on his legs and be the kid that was different and even now he shakes and tremors. I think kids are not as accepting as you would think when other kids have differences.

For me, I’d give everything up, all of it, if I could take all this away because (crying) no child deserves to be born into constantly fighting to be healthy, constantly fighting to be what they call normal. I admire my kids because they have more courage than anyone I know but I would like it if they didn’t have this. (crying) 

You have to take it day by day because if you’re afraid, your kids are going to be afraid. My kids have seen me cry in front of them. I’ve cried with them. I’ve told them that I’m sorry that they’re going through this but, at the same time, there are plans for them that are bigger than even what we know. And that I don’t want them to give up on their dreams and that these might not be the dreams that they wanted, but they’re going to get to dreams. My older son has wrapped himself around swimming. Here’s a kid on a ventilator that’s swimming and doing extremely well and trying for the Paralympics in 2008. Nothing’s going to stop him. My younger son hasn’t really found a passion. The best advice I got, a neurologist told me, “it’s not about your dreams for your kids. It’s about getting them to theirs.” All these things that I wanted for them—aren’t going to turn out that way, but they’re fine in another way. They find their way. It’s their life.

In a typical day, they get up, eat breakfast and take all these different vitamins because that’s the only thing available to them for the disease. There’s no medication. The younger one goes to regular day school. The older one will get up later and come home earlier. He only goes in for three classes. When he comes home, he sits on his ventilator for about two hours, then does his homework and work for the other two classes at home. Then he goes to swim team from 4:30 to 7:30. Then the younger one comes home and finds something to do. He’s still resistant to going on the ventilator at home, though it would help him out a ton, but we’re easing him into it. It’s a day-by-day thing. They could get sick and their body could shut down or they could feel weak one day.

I’m extremely fortunate in that I have a boss who, when we got the diagnosis said, “do what you need to do.” He’s never asked where I am, when one of my sons was in the hospital. Instead, he’s said, “how can I help, what can I do?” When Joe was out for a month in December, I told him that I didn’t think I could keep doing this and he said, “no, I need you. I’ll work with you.” If I didn’t have a job, all my attention would go to this disease and that’s not healthy. One thing I’ve learned is if something happens to one of them, life has to go on, as devastating as it will be.

My kids, if you look at them, look pretty healthy so a lot of people don’t understand it. I would call my oldest son a miracle. He has defied every odd against him. Some people don’t understand it and think we’re making a bigger deal of it than it is. Every Sunday I do an infusion of antibodies because his immune system is declining. They see the good part of Joe. They don’t see what we see and how we have to fight to keep him going.

When my older son was diagnosed, our house was up for sale. We live in a relatively small home and the cardiologist looked at me and said, “you’ve got problems. Take the house off the market. Let’s get some perspective here.” We chose to stay (in one of the most expensive housing markets) because the team at Stanford Medical Center has embraced us. They’ve come over to the house when the boys have been sick. They’ve given me their home cell phone numbers. It’s been hard because we’re so busy rushing through life that I don’t know sometimes if we’re living.  There have been times when I’ve thought, “let’s just move to Tennessee and get three houses and work at Starbucks.”

I was raised a Catholic. I’ve struggled with coming to terms with how this could happen to innocent kids, but I also believe, looking at my older son, that there’s got to be a God because he’s a miracle. I know it. He knows it. He swims faster than able-bodied kids. Same with my younger son. He has damage on his brain, yet he still has a genius-level IQ and tremendous vocabulary. There’s got to be something beyond what we understand looking out for these boys because it doesn’t make any scientific sense.

I think the single hardest thing is hoping you’re doing it right, giving them good values without spoiling them and making sure that they know what it’s like going out into the world. I just want to raise boys that are contributing members to society in a good way, that they’re not going to be just driven by money. They’re going to be good brothers, husbands and fathers.

The best thing about having kids is that you get to relive your childhood again. My sons loved fire trucks, so I knew every fire truck. To this day, I can say, “oh, there’s a tiller truck.” The love that I have for those boys, I never thought I’d feel for anybody.

Being a mother has given me tremendous patience and empathy and courage and honesty. I used to think I could get everything done. Now I understand that kids don’t just need to see you strong. They also need to see you vulnerable.

Advice? Love them and hold them because it goes so fast. It goes so fast.

2 Responses to “When we finally figured out what was going on, I had to sit my sons down and say, “this is what the disease is. We don’t know what’s going to happen, but these doctors are going to do their best.””

  1. There could be something wrong with your RSS feed. You should have someone take a look at the web site.

  2. admin says:

    Thank you for writing. I hope I’ve fixed it. I would love for you to include my content on your journal website. -Liisa

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