It isn’t supposed to be this way is it? You are the parent and have children to take care of. Yet now you are faced with this disease and you wonder if in time your kids will be taking care of you. I think what breaks my heart more than the firsthand stories of what this disease is like from a patient’s perspective are those stories told by the kids who have parents who have MS.
When I was first diagnosed with MS I went to the internet for information and support. There was a video documentary posted to one of the MS sites which really got to me. It showed different families and how they were dealing with the fact that mom or dad had this disease. One particular family showed the dad playing some touch football with his boys and then it cuts to the future where dad is sitting on a couch with a walker before him and saying that he can’t really do much of that anymore with his kids. His sons tell the same story but with such gentle honesty that it tears you up inside. One of his boys says to the camera something like, “It’s okay that dad can’t play ball with us like he used to. We just do different things is all.” I think for any dad, one of the great symbols of fatherdom is to be able to play ball with your kids. Take that away and you have a great loss, not just for the lack of ability, but for the attack to one’s spirit.
For any parent who has MS, you realize that this disease doesn’t just affect you. It has a profound effect on the entire family and including your children. The losses one has to cope with extend past mobility to how we perceive ourselves within the family unit.
If you have always seen yourself as the strong one and the person who takes care of things then it may be especially hard to be seen as someone who needs help. I have only been diagnosed with MS in the past two years so I am still navigating the emotional waters of self perception.
I remember one of the first times I felt self conscious about how my MS might appear to my teen-age son. In the same year I was diagnosed I also went to my son’s open house for middle school. My right leg began to feel wobbly as I walked through the throngs of parents and kids. I began to pray that the symptom would go no further and reveal my disease for all to see. I did not want to concern my son or to attract attention to myself. I wanted this to be his day. I was extremely grateful that my leg did not give out on me and I was able to focus my attention to my son and his school. I realized that it would not always be this way. There would be times when my disease would command attention whether I liked it or not.
As much as I would like to I cannot protect my children from the fact that I have this disease. And this fact is hard for me to swallow.
In these past two years there have been compromises and adaptations due to my having MS. The explanations came forth reluctantly at first but now I feel more at ease with offering them as they are the truth. “I am too tired to (fill in the blank with an activity with my children)” is generally met with stoic acceptance. I have to think about things I did not before such as the heat. I felt bad when I had to say no for the whole family to our yearly trip to a water park destination as I knew the heat would surely incapacitate me. Thank goodness that there was a suitable substitute. They now offer resorts which offer an indoor water park without the sun and heat. Being a parent who has Multiple Sclerosis means that you get creative out of necessity.
You worry a lot when you are a parent who has MS and especially about the future. You begin to barrage yourself with the “ifs.” If this happens then what? How will I handle things if the “what ifs” come true? I have a visual which helps me a lot in this case. I like to bike ride and there are times when I am going up a steep hill and I think that I cannot make it. The time when it seems too impossible is when I am looking more up the road of what is coming next. I see the grade of steepness of the hill and the long path before me and I feel like giving up. But if I focus solely on my front wheel as it spins to my actions I am much more able to get up the hill. By focusing on the here and now and what I do in this moment helps me to come to grips with an uncertain future.
I am much more appreciative of the time I spend with my children since my diagnosis of MS. I don’t want to miss these moments because I am trapped in worry over what I might not be able to do now and in the future. I know this though. No matter what happens I will always love my kids. That is the one thing MS will never be able to take away. It can try to destroy everything else but I will always be a parent. Some things, thankfully, endure any circumstance.