For those who have known me a long time through my diagnosis and (many) treatments, the first thing I get asked is “how are you going to handle being a foster parent while being sick all of the time?”
Great question. My answer? Like any other chronically ill parent.
Being chronically ill is depressing, horrible, and debilitating at times. It’s physically, mentally, and emotionally challenging. Foster parenting will be hard – but it’s going to be hard for both Preston and I, and he is perfectly healthy.
My point here is that you can’t let your circumstances run your life. I have learned to live with my illness on a day-to-day basis. Sure, flare-ups come and go unannounced, but I’ve become very good at listening to my body and what it needs.
When I was talking about this to my therapist, she brought up a great way for us to ensure we are only taking children when I’m capable. She told me to make a scale from 1-10, 1 being non-symptomatic and 10 being severely symptomatic. She asked me to rate myself at that moment. At the time, I didn’t need my cane and I could drive on my own, but I couldn’t work out, take the dogs for a walk by myself, etc., so I said I was a 4. She then asked me at what limit I would consider a danger to be alone or be alone with children, and I said an 8, when I would need my cane 24/7, wouldn’t be able to drive, and would be in constant, debilitating pain.
This system really helped both Preston and I because we could physically map out my symptoms onto this scale, and know that when we get a call, we can examine my symptoms and know if it’s the best time for us to take in foster children.
And let me make this VERY clear. I would NEVER put a child’s life in danger. If I become too weak, I use my cane to help me move. If I have double vision, I don’t get behind the wheel of my car. I ASK FOR HELP. Preston and I have a clear plan to make sure I and our foster children are taken care of in the event that I have a severe flare-up. We will treat these children as our own – period.
Of course, I appreciate the concern. I know it’s hard for people to watch me be in pain all of the time. And lucky for me, a new medication has changed my life recently (more on that later). But I don’t let Myasthenia gravis run my life. I don’t use it as an excuse to lower my standards for myself, and I don’t want anyone to think that I am less of a person, a mom, or anything else because of it. I have Myasthenia gravis, but I’m not Myasthenia gravis.