MS Parent: The Evolution of MS & the Celebrations of Parenting
This year my daughter Madeline turned 14 years old and my MS turned 27. To say that time flies is an understatement. Seems like just yesterday I had an infant whose head I needed to support, and an MS that had no support what-so-ever.
When my MS was first born in 1988 there were no disease-modifying therapies and neurologists didn’t have any real clue about the disease, let alone how to manage it. There was no Internet to help me connect with other people who had MS and could relate to what I was going through. It was a very scary and isolated time.
Even though my MS was already a teenager by the time Madeline was born, the fear of how my MS would affect my parenting was amplified. How would I be able to care for this tiny person? What if I fall when I’m holding her? How will I be able to teach her how to walk when I struggle with it myself?
The fears of a being a first-time parent eases with experience—living with MS doesn’t. The uncertainty of living with an unpredictable, incurable disease does not go away with time. There are no set milestones in my aging MS and no developmental percentages that the doctor confirms as normal. Suddenly all of the coping mechanisms I’ve developed to deal with my uncertainty fell to the floor. The realization that what happens to me will impact my baby girl over the course of her life overwhelmed me. But what I couldn’t possibly recognize at the time, is how my MS will benefit my daughter and in hindsight she has learned a more valuable tool that would help her through her own realities.
People aren’t always good at asking for help, especially when they need it most. When I was diagnosed at age 20 as a college student, I needed all sorts of help. I was young, so asking for help made sense. But the challenge of being an adult who needs help (beyond the basics of caring for a new baby –everyone gets that!) is really difficult. Oddly, it was this more “legitimate” need for help that made me realize what a difference it would make in my, and now Madeline’s, life.
As my baby became a little girl, and now a teenager, her needs have changed and so have mine. And sometimes we don’t know what we need until we get there, but I have found that most people are very happy to be helpful if you let them. It was the little things that made a huge difference and my favorite was when my friend cleaned my house while I took care of Madeline. (I could use a little house cleaning right now, as a matter of fact!)
My challenges with MS have empowered her for life in many ways. How I cope with the disease is an unspoken message that whatever we are dealt, there is always a way to make it work. That life isn’t always fair, nor is it something we have control over. But what we can control, is how we live within those challenges and that is a great skill to have learned early in life. That we can find a way to live with “what is” and as a result, be better equipped to handle whatever comes our way. That is a lesson that is very hard to teach.
Having MS, the good and the bad, can make that life lesson evident by simply living with it. I truly feel that growing up with my MS has made Madeline a stronger and more empathetic person. The fact that I now hold on to her for stability (literally) is the kind of help she is proud to provide. And with that, I feel lucky in many ways. (Though I’m told that luck had nothing to do with it!)
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Amy wrote for HealthCentral as a patient expert for Multiple Sclerosis (MS).