Lupus Canada is pleased to present Living with Lupus Corner with Mauricia Ambrose
When I was diagnosed with end stage kidney disease because of lupus, I didn’t tell my son anything about my illness. He was a toddler and would not have understood. I think the only thing I would have accomplished, had I done that is scare him. My focus was on making his life as normal as possible.
Normal for a child with a parent who has a chronic illness may be slightly different than many kids, but for the most part the daily routine is the same. Now that he is older, I have tried to teach him how to cope with the ups and downs of our situation. I am open about my illness, and I don’t pretend that everything is ok when it’s not. I tell him what’s wrong and what is being done. He is reassured that things are being dealt with and there’s no reason to be afraid. I think he has become a more empathetic person because of it.
There are some fundamental lessons that I have tried to teach him to maintain his physical and emotional health.
This is a lesson that was very difficult for me. Asking for help meant I was incapable. I have learned that asking for help can be a source of strength. It’s ok to reach out to someone you trust. There’s no shame in needing someone to talk to or a shoulder to cry on. It lightens the load and in turn allows me to stay healthy. Men are taught to be independent, but my son understands that it’s the people around you that make you strong. That he should surround himself with friends who will be there for him, even when it’s inconvenient.
We are all so busy being busy that sometimes we forget to stop or slow down. I recall, many years ago, I realized that I would walk very fast from one meeting to the next even when I wasn’t late. I was constantly rushing around on autopilot. It didn’t benefit me or anyone else when I pushed myself to the breaking point. I’ve learned that lesson the hard way. The key to understanding when to stop or slow down is listening to your body.
I have failed miserably at this. I am getting better. Now, I understand the symptoms that lead to something more severe and those that are mild and can be “ignored” for a while. I know how much my body can take and I work with my medical team – yes, I have a team – to monitor my blood work and ensure things stay in the normal range. That doesn’t always happen. I have been caught off-guard on a number of occasions, but I get back on track eventually. I am trying to teach my son how to listen, when he is in pain, and to understand his emotional state so he can react appropriately.
At a very early age my son understood the dangers of smoking. For someone with a perfectly healthy body to deliberately endanger it with carcinogens has always baffled me. I assume some start young and are unaware of the danger, then by the time they become aware they are addicted. I’m glad he learned that lesson so young. Now, when I ask him if he will ever smoke it’s a resounding no. Alcohol is a different story. He asked for a beer this weekend – he’s 13. Of course, I told him no and he vowed that he would taste beer as soon as he is old enough. A battle I will fight on another day.
I have never been a particularly athletic person. If I am completely honest, I don’t have an athletic bone in my body. I do, however, understand and appreciate the importance of exercise. My son and I would go for walks down to the beach in the summer and have breakfast at a coffee shop in the neighbourhood. We went biking around the neighbourhood as well. This doesn’t happen as often now that he is older and has discovered the excitement of gaming. About a week ago I convinced him to walk the dogs with me. There is hope yet.
Father’s Day is just around the corner. I have had to be both mother and father to my son. Sometimes I wonder if I’m getting it right. I hope that the lessons I have taught him, and continue to teach him, stay with him to adulthood. I want what every mother wants for her child, for him to be healthy physically and emotionally. I believe if he surrounds himself with the right people, respects his body and learns when to slow down, he will have the life I want for him.
Remember your struggles shouldn’t define you; they should motivate you.
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