LIFE with Lupus
Approximately 1.5 million Americans and more than five million individuals worldwide have a form of lupus. Ninety percent of the people with lupus are women. To gain an accurate account of living with Lupus while raising children; we chose to spend the day with someone who has lived with Lupus most of her life. Her name is Carmalita Sims, she is a disabled “lupie”, someone living with Lupus, a wife and mother of three, two teen girls and a deceased son. I had a chance to sit down with Carmalita and ask her a few questions concerning parenting and life in general with lupus. This is what she had to say.
How and at what age did you explain to your children that you are “disabled”?
My children vaguely remember Mommy “well” It is and has always been their lives. I don’t think that they dwell on the notion that I am considered disabled or that they have a different or more complicated existence. They just live the only life that they’ve ever known.
Do you think that having Lupus has had an adverse effect on your ability to raise your children?
I wouldn’t consider the affects adverse, but different, and that as a result my approach to parenting is tailored to fit what I can and cannot do. Living with Lupus has afforded me a unique appreciation for my children and the privilege to raise them.
Do you think that you parent from a different perspective than that of an “able” parent?
I do! I parent my children by always trying to institute a lesson or example that speaks to gratefulness. I encourage them to explore and to do many of the things that I only dream of doing . I remind them of the advantages that they have as able individuals, and I insist that they work towards achieving the own personal goals in.
What have you found to be the most challenging aspect of parenting with respect to living with Lupus?
The most challenging aspect of parenting with respect to living with Lupus is reminding me that my children are just that…children! Lupus often causes aching limbs and joints which result in an inability to move freely. My challenge is to remember that they are not my aids or care taker, instead they are gifts that I’ve been given to raise into productive members of society.
What have you implemented to insure that your children are able to live as children as opposed to children of disabled parents?
We allow them to be children! We remind them that my physical limitations are not theirs and that they have been given the gift of health and happiness. We strive to foster an atmosphere that won’t allow them to be burdened with what we need; but to be able to have a healthy focus on what is best for them.