Archive | February, 2013

The Desperation of a Child’s Cry

28 Feb

As President of the National Meningitis Association, I talk/e-mail with many parents whose children have been affected by vaccine-preventable diseases.  All of the stories “get” to me, but some just “tear through my heart.”

This is one of them, about an 8 year old boy who lost both legs last year due to meningococcal disease.  Because of healing issues, he has not been able to be fit with prosthetic legs yet.

This is what his mother wrote, because her son was crying, because he couldn’t play outside with the rest of the kids and didn’t understand why this disease had happened to him.  Her words brought me to tears, and I just wanted to hug this little boy and take away his hurt.



Bummed…..not sure what to do….As I write this I am fighting back the tears. Deven has been doing so well with school well yesterday he tried outside recess ( I was hesitant about it because unsure how much he can really do) He came home from school asked him how his day was like I do everyday and he said ok… he always says great and goes on to tell me he learned everything and so on. Could tell by the look in his face something was a matter… asked if he went out for recess and he broke down. Which breaks my heart he is such a strong little boy and to this point has never broke down…he told me he can’t play football, or kickball and run like everyone else. And went on to say I wish this never happened to me why did I have to get sick. Why me mom. Which broke my heart I tried to be strong and hold back the tears because I ask the same question day after day to god. I know people tell me for bigger things…but as a mother it hurts, it hurts to look at him and see the things my innocent child went through its hard to accept the fact is for him to bigger things in his life. I told him this stinks, really stinks and I don’t know why this happen but we have to look at the positive side of it that we have him and he is healthy and so he can do big things in his future ( feel like a hypocrite because i don’t accept that reason but i can’t tell him that) He says he doesn’t want to go outside. I am not sure if I should let him make the choice and when he is ready he will let me know or do I push him to go out? I know life isn’t going to be easy and I do not want him to give up when things are hard but as a 9 year old boy is this something I push? I wish I knew which way to go. 😦

Down, But Not Out

7 Feb

This week I had the privilege of attending and speaking at the Hanger Prosthetics Annual Conference and Exhibition.  This is the fourth year I’ve attended, and each year, I am amazed at the stories and courage of amputees.

This year, a meningitis survivor from Brazil, spoke with me during my session.  I first met Pedro two years ago.  He is a quad amputee, and was just learning how to use short prosthetic legs called stubbies.  Hearing Pedro speak, having his mom fly in from Brazil to hear her son, just was overwhelming.  This young man is now walking, has functional arm prosthetics, and is attending college.  He has a beautiful girlfriend and has gotten his life “back.”  He has what I call a “new normal” life.

To hear about his mental and physical fight to get where he is now, his ability to share funny anecdotes about his struggles along the way, were just so inspiring.  I hate that meningitis has done this to him, but I am so proud and grateful that science and wonderful prosthetics have given him back his life.