by Charie Winburn

Created on: March 30, 2009   Last Updated: April 07, 2009

Most children have no idea what a "chronic disease" is. Most don't have to. I do believe that growing up with a mom who has Lupus has been a positive thing to my daughter in so many ways.

About a year after I was diagnosed my husband and I decided to adopt a baby. When I first saw her face I knew that I would spend the next 20 plus years of her life being the best mom I could and giving her a wonderful childhood, Lupus or not.

My first stumbling block was sleep. Anyone with a new baby knows that is very difficult to get a lot of sleep and one of my issues with Lupus is sleep. Often I would stay up late for a feeding and then sleep late in the morning to compensate. Fortunately I have an amazing husband who would get up with our daughter no matter how often she cried. Thankfully she began sleeping through the night very young and sleep wasn't the issue anymore.

My second hurdle was physical exertion. Have you ever tried to chase a two-year-old around when you don't even have the energy to walk out to the mailbox? I mastered the art of sitting on the grass and throwing a ball. I also found that if I wanted to play tag with my daughter I had to make sure the next day was a day I could relax and recover. On many occasions the magic of play dates saved my life. I learned quickly where the other children were in our neighborhood which also socialized my daughter well.

There were many days when I had to ask Kaitlin to play alone because I was sick. My husband and I tried to teach her to think about other people and their feelings. She has always been a great help when I needed her. Although she is a kid and "wants" as all kids do, Kaitlin had to learn young when mom is sick she has to help. There are many times I feel sad that I can't be everything for her. I do know that there are lessons to be learned from every situation and amazingly it seems she is learning as am I.

Prior to my illness I was a very active person. I could stay up late, get up early, go hiking and biking, play sports, shop all day or do anything else. When the disease hit that all changed. I found an amazing quote on a Lupus chat room that changes my life. I regret I don't know who said it but it was this, "I must stop looking for the woman I was before I got sick. She no longer exists. I must now enjoy getting to know the new woman I am and exploring the world where she lives." I had been trying to be the old me instead of building the new me.

From that day forward I learned to live with the disease

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