I knew parenting was going to be harder for me because of my Parkinson’s disease, but I really had no idea. It’s one of those things, you can never know what it is really like until you are in it. When I first held my son in my arms at 2:52 a.m. on that rainy July morning, my heart swelled with a love I had not known was there. I clutched his tiny body and promised him that I would do my very best to take care of him.
The first 18 months, I devoted all of my resources to taking care of him. I went to bed at 7 p.m. when he did so I would be able to get up for the nighttime feedings. We spent much of the first four months at home. I diligently stuck to a nap routine. I wasn’t the mom pushing a napping baby in the stroller on a walk or at the mall. If he was sleeping, I needed to sleep. I would often lay down on the floor of his room at the base of the baby swing. I never knew if he would wake in one minute or five hours, so I would repeat to myself: “I am fully rejuvenated in one breath” and hoped I would be ready when he woke up.
As he got a little older, we ventured out to our library Parent and Baby class. I would overhear other moms talking about going out for coffee after class or hitting the grocery store on the way home. These simple activities seemed utterly impossible to me. It was all I could do to get him back in the stroller and get us home. I recognize that part of my challenge is mental and partly physical. I did not have full confidence in myself as a parent because I have this body that may suddenly start shaking, spasming and dragging.
When my son was about 2 years old, I took him to the city’s splash park — an accessible playground with little water features. It was a major mental and physical feat for me. I felt like a total champion. An outing that would be a typical occurrence to other parents was a major celebration for me.
I can see that my family’s experience is different because of my chronic illness. We seem to do less than other families at a slower pace. We stick closer to home. We mostly spend time with each other. It is hard to be with other families because I just can’t keep up. This lifestyle can be boring, isolating and at the same time allows us to be more connected to each other and to cherish more of the simple things in life.
I don’t know what kind of parent I would have been without Parkinson’s disease. I’d probably in the fast lane like many other families, busy doing several activities each day, rushing from one place to another. I am grateful for the pace of our lives, for our time together and for our closeness to our family.
Every day my son encourages me to get out of bed, move and be a part of life when my body would rather not. I am blessed and grateful to have the time and the support to be able to cherish this journey.
A few ways to make parenting easier with a small child:
- Have a safe space for you and your child. Make sure it is very well baby or toddler proofed so you don’t have to intervene so much to avoid injury or damage.
- Allow your child to develop the skills to play independently.
- Encourage independence to lessen your workload.
- Use your resources. Grandparents, family, neighbors.
- Be OK with slow. Those days when I am not well enough to escape the boredom by going out are when something amazing happens.
This parenting thing has been a real journey — a journey where I don’t have a map and I’m not really sure where I am going or how to get there. Every time I think I know the path, something changes and I have to start again. I am on this journey with an unpredictable body that gets slow and freezes at various intervals, loses stamina quickly and shakes uncontrollably. My life has a slower pace which has made this journey different, challenging in some ways, blessed in others and all of it cherished.