A teddy bear, blocks, and a xylophone locked in a jail cell while a key goes to unlock the padlock.

5 Strategies to Parenting With Lupus

Kids are rambunctious, alive, and require a lot of attention. When I got married, I became a wife and a mother of a 1.5 and 4.5-year-old overnight. I was dropped in the droves of motherhood. I quickly realized that children are a full-time job, as was living with lupus.

I learned very quickly that having children that were in school also opened up a realm of contracting many contagious diseases. Pneumonia; Hand, foot, and mouth disease; bronchitis, etc. were more detrimental to me than most. As the children got older it became easier to explain to them what lupus was and how it affects me.

My husband and I needed a plan of attack to assist in allowing me to be a good mother and a healthy individual. These were the ideas we came up with.

1. Education

This was key. Even at a young ag,e we watched videos on immunity and explained that I could not fight off the bugs they could. Creating awareness and reinforcing how I was different helped them understand. If I had a flare-up, I let them examine my joints. If Raynaud’s happened to occur, I showed them how to triage the green fingers. As they got older, we started sharing more information and intense medical issues.

2. Resting

Explaining to the kids that I needed to rest a lot when I was sick was a necessity not a choice. I remember the first time I was called lazy. It broke my heart. As well as when I was told how I sit at home all day and do nothing. These words hurt, but the kids did not know better. All they knew was I did not participate in lots of activities and I was in bed a lot. Education here is still ongoing.

3. Germs

Being a scientist, I showed the kids the effects of not washing their hands, using hand sanitizer and washing hands with soap on a petri dish. They were pretty amazed at the differences. A lot of these experiments can be observed on the internet. Explaining how important washing hands before touching me helped with decreasing my ailments and eventually theirs. Good hygiene benefits everyone. Even if we were out and traveling, we stopped to use soap and water.

4. Strict hygiene

I made sure that the kids bathed and changed clothing after daycare and school. We talked about how we would not roll on a public bathroom floor than sleep in bed with the same clothing. Schools and daycare are kind of like a bathroom floor. So, bathing and changing clothing just became routine. Once we got home from public areas where we touched lots of things, like Chucky Cheese, we bathed to protect me and them.

Teaching children manners such as covering their nose when sneezing and coughing were essential, as well as washing their hands after.

There was a strict rule of no sharing utensils, straws or cups. We also stopped taking bites of each other’s foods and trying ice creams, etc.

5. Affection

It’s hard not to love your kids. But when they were sick, strict rules had to be set in place. I spend my first year as a mom mostly in urgent care or the ER due to children’s simple ailments being contracted by me and turning severe illnesses.

Kisses, but not hugs were limited when they were sick. I was not giving up affection, but also not endangering myself.

Close snuggles were placed on hold, close contact for extreme periods of time when the children were sick. This added a lot in the prevention of illnesses transferred to me. This sucked but kept me healthy.

Having the kids be part of my solution vs. being a part of the problem created an atmosphere of support. Being proactive with them saved me many visits to the ER. There is a way to have a family, children, and love them and live with lupus. It just takes a lot of effort and time.

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