So another day has passed with my three creative daughters. This one ended with a “spa experience” at home courtesy of my girls, a tradition usually reserved for special occasions -Mother’s Day and my birthday for example. As they steady my hands so they can paint my nails a rainbow of colors, I reflect on how entirely peaceful and joyful times like these are.
Special moments like these, alone with my girls, are so precious. Even though some may define me as a physician or now a patient advocate, mothering is truly the most important part of my life, a sacred responsibility that I take very seriously and although some may not view this as healthy, it really does define who I am. I cannot imagine life without my three beautiful daughters. They may drive me to drink at times but every moment I spend with them, I view as a true privilege and honor.
I’m not sure what brought on this intense devotion I feel as a mother and if my illness has affected in essence the way I parent. It’s a question I ponder more and more these days. Would my relationship with them be different had I not faced the challenge of Parkinson’s? How does chronic disease in general affect the way we parent? Would I still have these feelings of sincere gratitude? Because I really am so grateful to have this opportunity. Truthfully, I’m grateful to be here in the first place. When I received my initial diagnosis, I was a new mother and as I looked at the newborn asleep in my arms, fear penetrated my very core. What did the future hold? Was I going to be there at every life stage for this precious child or for those that may come after her? Would I physically be able to parent her effectively? How would this disease put me at a disadvantage as a mother? Would this disease be a burden to her eventually? Would I be a burden? Many of these questions remain unanswered, only the future will tell.
Parkinson’s disease, like it has for others with chronic illnesses, has undoubtedly affected every aspect of my life and I guess parenting is no exception. Since my life as a mother began, the Parkinson’s has been an unwelcome companion and despite my protests, it has been slowly relentless, continuing to make some of the practical aspects of parenting much more difficult. From changing and bathing them as newborns to styling their hair now that they are older. From helping them with their school projects to running after them in the yard. From showing them how to color inside the lines to teaching them how to use a knife and fork. Although some of these examples may seem rather trivial, when those limitations are placed on you by a disease that never gave you a choice, it is supremely frustrating.
The uncertainty of my functioning day to day is not only frustrating but when I think of my daughters, sometimes leads to feelings of guilt. Many times I have worried about how my illness may be affecting my daughters. After all a diagnosis such as Parkinson’s is really one that affects the whole family unit, particularly the most vulnerable, our children. They are stressed enough by the pressures of school, their peers and dealing with what life in this fast paced world brings their way. And I hate to think that I’m adding to that burden. I’m sure on days that I’m feeling overly tired and symptomatic I’ve let the occasional extra treat pass by me or let the TV run longer than usual. Trying to make up for a missed trip to the park or a movie left unseen – trying to assuage my guilt as much as indulging them. Guilty parenting is not a good thing. Luckily time and experience have taught me that as children, their sense of security comes from knowing that overall I’m a soft place to fall but not a pushover – a fine balance for any parent regardless of health issues. A balance I struggle with but am mindful of.
Despite the struggles, I really must admit that as infuriating as this disease is at times, in some ways, it has also been my ultimate blessing as a parent. It took away my career but there is a silver lining even in that loss. After all, it is very easy to allow a career such as medicine take over your life spending countless hours at the clinic, away from family and home. Parkinson’s disease gave me no choice but to slow down, to physically spend more time with my children, the extra time spent hopefully benefiting them in their development. This disease has also taught me to take nothing for granted. Each day that I am able to be there for my family, be it just the daily grind, is a good day, one that I truly treasure because fourteen years ago, I wasn’t sure I would be enjoying this level of involvement. And not least of which this disease has definitely taught my children a lesson in perseverance; that life will have its share of challenges but how they face them will define them as individuals.
So I think the answer to the question “has my illness affected the way I parent?” is yes. Just like all our actions and attitudes are shaped by our experiences, I am no exception. Has it helped or hindered me as a mother? You’d have to ask my girls but as I reflect on the empathy, kindness and compassion they have learned through this experience, I have my answer. And I do know that on this special day, as they try and steady my hand so that they can apply the bright polish they have chosen, the carefree giggles that escape their sweet lips while they aim for what has become a moving target, says it best of all…
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