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Love, loss and friendship: Getting over the death of a child

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There is no pain greater than the loss of a child. Parents who have suffered such a tragedy say that they never get over it; at best, they get through it. Lynn Bozof of Atlanta, Georgia, lost her son Evan when he was 20. A junior at Georgia Southwestern University, Evan was an honor student and a pitcher on his college baseball team. Below Lynn shares her experience of how the friends she made through a support group helped her cope with this unimaginable loss.

Can you briefly describe the circumstances leading to Evan's death in 1998?

Evan was away at school when he complained of a horrible headache, the worst he'd ever had. He was nauseated and couldn't hold anything down. We told him to get a friend to take him to the emergency room. When he arrived at the ER, the doctors thought he had a virus but kept him overnight so that he could get some extra rest.

I called my son about 7AM the next day but he was too sick to talk. I had the nurse put the phone up to his ear and asked if he wanted us to pick him up to come home for the weekend. He did. Before we could even leave home, we received a call from the hospital saying that Evan had meningococcal meningitis and was in critical condition.

When you get a phone call like this, your mind can't fully absorb what you're being told. My husband and I drove three hours to see Evan, not knowing if he would be alive when we got there. A few hours later, the doctors transferred him to a larger hospital, better equipped to handle bacterial meningitis. As he was taken to the ambulance, I told him, "Love you, Evan." As weak and sick as he was, he said, "Love you, Mom." Those were the last words he said to us.

Before long, all of his organs started to shut down. His fingers, his toes, his ears, and his nose all turned black, then his entire hands and feet, and the gangrene kept spreading up his limbs. We watched Evan fight to breathe, fight to live. Two weeks later, he was transferred to a third hospital. His arms had to be amputated above the elbows and his legs above the knees. We signed consent forms allowing the doctors to amputate as much as was necessary to save his life. Several days later, he had grand mal seizures for 10 hours that caused irreversible brain swelling, leaving him brain-dead.

Our son Evan, whom we loved more than we can ever put into words, had to be disconnected from the machines that were keeping him alive. He was placed in a body bag in front of our eyes.

Were your friends at home a source of solace and support after the death? How did they react?

Many friends offered support and were great, but some tried to avoid me. They probably didn't know how to handle it. I felt different and alone, as if were wearing a sign, "Mother who lost her son." Not only was I dealing with grief--but also somehow I felt guilty that I had allowed this to happen.

After Evan's death, what drew you and your husband to get involved with a support group?

At that time, my husband and I never knew that college students were at increased risk for meningitis. When we found out that a meningitis vaccine existed, we realized that our son didn't have to die. And if we didn't know about the vaccine, we were sure there were other parents who didn't know either.

We met other parents who had similar stories: The common denominator was that none of us knew that this disease was potentially vaccine-preventable. To have more of an impact, we banded together to form a national organization, the National Meningitis Association (NMA). Along the way, I met other moms, never knowing how closely our shared tragedies would bond us together.

Can you describe the special bond between you and other Meningitis Moms? Do you consider them friends?

There's a line from a Charles Dickens book, "It was the best of times, it was the worst of times." Losing a child is, by far, the worst of times; there is nothing worse. For me, the "best of times" came into being with the wonderful friendships I formed within NMA, especially with a group we call Moms on Meningitis (M.O.M.s).

Meningitis swoops down and robs you of someone you love. Friends can empathize and share your grief, but there's something so pernicious about the infection -- its relentlessness, the way it invades your child's body -- which only a mom who has gone through it, can understand. Through this common bond, we formed great friendships. We've laughed together, cried together, shared stories of children and grandchildren. We were tied together at first by grief, then by determination to not let this happen to other families. In the process, many of us became close friends.

Have you learned any lessons about female friendship through your family's tragedy?

I've learned that when you find friends, as bad as things may seem, you aren't alone. I know that when my feelings of grief start to overwhelm me, that I can reach out to one of the moms, and share my feelings. She isn't going to think I'm "overdoing it" or that it's time to "get over it." They know what I'm going through.

Just today, I "facebooked" another mom who is going through a holiday slump. While you miss your child each and every day, certain times of the year, when you expect your whole family to be together, the loss seems greater. I said that I was going through a slump, too, and just knowing that each of us wasn't alone, made us both feel better and feel closer. While I don't want anyone else to lose someone they love to meningitis and become a part of our support group, I'm very grateful for the friendships I've formed while dealing with the loss of my child.

* Lynn Bozof has been the President of the National Meningitis Association since 2002.

* DISCLOSURE: After writing several national magazine articles about meningococcal disease and meeting the moms, the author joined the volunteer Advisory Committee of the MHA.

Information about meningococcal disease

Information about the National Meningitis Association

Information about the M.O.M.s program

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