And, right now, I’m really sad.
You see, August is Spinal Muscular Atrophy (SMA) Awareness Month. SMA is the disease that took my son Andy from me. This month is filled with awareness events and outreach to educate people about this horrific disease – the number one genetic killer of children under the age of two. But, my family learned about SMA the hard way – we lived it and lost to it. Because of SMA, my kids are growing up without their big brother, and I don’t have my firstborn son.
SMA is part of our every day.
Today, Lucy and I were in the car on the way to her pre-school. The radio was on, and the announcer took a call from a man named Andy. It sparked the following conversation.
LUCY: I know that name! Mommy, is that man talking about our Andy?
ME: No, baby, he’s talking about someone else. Another Andy who just called in to the radio station.
LUCY: But Andy is my brother.
ME: That’s right. He’s your big brother. He was my first baby.
LUCY: Then me, then Baby Will.
ME: That’s right.
LUCY: But Andy doesn’t live with us.
ME: No, baby, he’s doesn’t. Do you know where he is?
LUCY: He’s in heaven.
ME: That’s right. He’s in heaven.
LUCY: But there are no phones in heaven, so Andy can’t call us. Right, Mommy?
ME: No, there are no phones there. But, Andy lets us know that he’s with us in other ways, doesn’t he?
LUCY: I think so...
ME: Does he send us dragonflies?
ME: Do you know why Andy is in heaven?
ME: Andy had a disease called SMA. It made Andy’s muscles very, very weak, and it made him very, very sick. He couldn’t hold up his head or sit up or even eat. It also made it very hard for him to breathe.
LUCY: Could he play?
ME: Yes, but not quite like you play. He would play with finger puppets and other little toys. Mommy would hold him and dance around the house. He really liked bath time, because he could kick when he was in the water.
LUCY: I like to kick too.
ME: I know you do. But your muscles are much, much stronger than Andy’s ever were.
LUCY: Did he have to go to the doctor?
ME: Yes. He went to lots and lots of doctors, and they all tried to help him.
LUCY: But he didn’t get better?
ME: No, baby, he didn’t. SMA isn’t like a cold. There’s no medicine you can take to make it go away.
LUCY: I go to the doctor and get a check-up.
ME: That’s right. And, the doctor says you are healthy and growing.
LUCY: Did Andy go to the hospital?
ME: Yes, he was in the hospital for a long time.
LUCY: I went to the hospital too.
ME: You sure did. One time you went to the hospital when you were sick, but you got better and came home. And, then you came to the hospital to visit me when Baby Will was born. Remember when we came home and had a party?
LUCY: Yes, I remember the balloons. Did Andy come home?
ME: No, baby, he didn’t. He went to live in heaven instead.
LUCY: He did?
ME: Yes. But you don’t have to worry about getting sick like Andy. You have very strong muscles, and you don’t have SMA.
LUCY: Baby Will has strong muscles too.
ME: Yes, he does.
LUCY: And so do you and Daddy.
ME: Yes. None of us have SMA.
LUCY: Just Andy.
ME: In our family, yes. But lots of other kids have SMA too.
LUCY: They do? And their muscles aren’t strong?
ME: No, but they are really strong in other ways. Kids with SMA are brave, and smart, and a lot of fun. You know your friends in wheelchairs? Some of them have SMA too.
LUCY: Do they have wheelchairs because of their muscles?
ME: Yes, they use wheelchairs to move around because they can’t walk.
LUCY: Andy couldn’t walk either.
ME: No, he couldn’t. Not here on earth. But, in heaven, and he can walk and run perfectly. I bet he can even fly!
ME: Yes, in heaven, Andy is an angel. He is free from SMA, and he can do anything.
LUCY: Are there lots of angels in heaven?
ME: Yes, there are, baby. And, aren’t you lucky to have one of your very own?
We were both quiet for the rest of the drive. I was trying not to cry, and Lucy looked like she was deep in thought. I hoped that I hadn’t scared her. Had I gone too far in trying to explain this disease and Andy’s death to her? How could a three-year old possibly understand what happened to him when I still have a hard time accepting it?
We pulled up to the pre-school, and, as we got out of the car, a huge, blue dragonfly swooped down in front of us.
ME (reflexively): Hi, Andy!
LUCY (to the dragonfly): Hi, Andy! (Turning to me) Look, Mommy, he really can fly!
ME: Yes, baby, he can.
To learn more about SMA and how you can help us spread awareness, please visit Andy’s Army at www.andysarmy.com.