My Story
I was 27 years old, having just completed my residency in family medicine and expecting my first child, when I received my diagnosis of Young Onset Parkinson’s Disease. What should have been a joyous and wondrous time awaiting and then celebrating the arrival of my first daughter was instead shrouded by the fear of the diagnosis of an incurable, progressive neurodegenerative illness.
As far back as I can remember, I have always wanted to be a mother. I love children and felt so blessed to have three beautiful, healthy daughters in the first few years after my diagnosis. And even though I could not have known any deeper love and adoration for these tiny beings, there was still a cloud of fear hanging over me. As I looked into their sweet, innocent eyes, I couldn’t help but worry. Would I be able physically to look after them? Would I be there for all their milestones as they journey from childhood to becoming young women? Would I be there to help them, guide them through life; or instead, would I be their burden?
These thoughts were overwhelming for a period of time, and even though a great deal of introspection and experience have led me to a much more optimistic outlook, these fears do surface from time to time. But overall, like in many other instances, I have learned from this disease, as challenging as it can be.
Here are a few caveats that have helped me in parenting these beautiful girls while dealing with this disease.
Lessons Learned
Redefine what being a “good parent” means to you.
This was the first and most difficult change in thinking that I had to make. I had very high expectations of being “Supermom” but what was my definition of that term? Was it based primarily on my physical ability to parent? Did it depend on my ability to drive them to every event, to hike, bike and play every game they proposed? Would I be inadequate if they were sometimes better coloring in the lines than me or if my husband had to paint their nails because my own hands were too shaky? Of course, those types of experiences add to your relationship but isn’t the goal of successful parenting to raise well-adjusted, independent, compassionate individuals with the core character traits that will allow them to be a positive force in the world? All while providing them with a safe, loving and supportive environment to reach their potential? That seems to be a more important objective. And I know that this privilege to parent doesn’t rely on your physical abilities alone.
Re-evaluate how you do things.
Undoubtedly, the unpredictability and limitations of this disease will lead to frustration at times. Being limited, particularly when it’s not your choice, can be very difficult, but taking a proactive approach to creating a supportive network to help can mitigate some of those feelings. Enlist and accept help from family and friends. Create your own “village” made up of trustworthy, dependable, and supportive individuals to help with some of the practical issues, such as taking your child for a play date or picking up your children from school and so forth. And although difficult, accept that at times you may have to change the way you approach a task or recognize that some things may take more time than previously. Having to modify some activities because of physical limitations doesn’t lessen your abilities or make you a less effective parent.
Don’t let guilt impact your parenting.
When you live with a chronic illness like Parkinson’s disease, I think it’s only natural to feel a certain degree of guilt when it comes to parenting. That often has to do with our own insecurities and the perceived impact we believe our limitations (as we define them) have on our children. I know I’ve felt guilty from time to time, not wanting my illness to add to the already existing pressures my daughters, like all children, face at school, socially, and as they try and shape their futures. I’m sure I’ve let an extra treat slip by or allowed the TV to stay on a bit later than normal from time to time just to assuage my guilt for a missed trip to the park or a movie left unseen. But I now know that although inevitable at times, guilt is not a healthy motivating force. In my own experience, I have found that children’s sense of security comes from being in a loving environment with enough structure to help guide their behavior and development. They need their parents to be a soft place to fall but not to be pushovers.
Recognize that every life experience can be a teaching moment.
I often say that this disease has taught my children compassion, empathy for others, and the importance of charity. I think this experience presents us as parents with an opportunity to impart the importance of these values, through being open in our dialogue and empowering them with knowledge about how they can make a difference. And ultimately, as they watch us in our daily struggles and see how we deal with them, they will learn that life is not always perfect. There will be unexpected challenges that arise, but it is how they face those challenges that will define them.
And finally, this last caveat applies to all aspects of life with Parkinson’s disease: If you allow your fears of the future to consume your thoughts, then you will inevitably miss out on the gift of the present. So no longer do I ask myself if I will be a burden for my girls in the future. Instead, as they face this sometimes difficult world, I ask how I can lessen their load today.
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Photo by Aditya Romansa on Unsplash
Soania Mathur is a family physician and Parkinson’s patient, having been diagnosed in 1998 at the age of 27. She now works as a patient advocate, educator, and writer; and in addition to raising awareness of the importance of clinical research, her passion is empowering patients to live well with this disease and to work towards optimizing their quality of life. You can learn more at www.unshakeablemd.com.