Parenting with RA: One Mother's Lessons Learned

"We Are Not Alone and We Are Good Parents"

Parenting with RA: One Mother's Lessons Learned

By LanaPA Published at October 16, 2013 Views 1,415

Five years ago, shortly after my second son was born, my life was thrown a curve ball. I woke up one morning to all over body pain, unable to walk. My hands were curled into fists. I was caught unprepared. While I had dealt with unexplained symptoms and pain for a number of years prior, I did not have a diagnosis and my symptoms had never been this severe.

In that morning, I went from being a young mother to being chronically ill. My pain and symptoms were so bad I could barely hold my newborn. I needed my mothering instincts to kick in and I could barely take care of myself. If not for my sister, those first months after my diagnosis would have been even harder.

Uncertain about My Parenting

Even though much time has passed, every now and then, I find myself uncertain about my parenting abilities. I wonder if I am coping effectively enough with my RA and fibromyalgia to be the parent my children need and deserve.

I might be chronically ill, but I am still my children’s mother, and parenting often requires that I take attention away from myself and give it to my children who need me more. I am different than healthy parents because I parent with pain and fatigue on a near daily basis.

I am not the only one who suffers from the effects of my chronic illnesses. My sons, like other children with chronically ill parents, have many questions and insecurities about the future. The best I can offer them is my honesty and openness about the impact of chronic illness on all of our lives. I know providing age appropriate answers to children is not an easy task, but it is necessary to put children at ease.

What My Kids Question

My 5-year-old sees my chronic illnesses in the present. He has never known a healthy mother and his questions have more to do with how I am feeling now versus how I will feel tomorrow or in the long term. He understands that sometimes Mommy hurts, or that she is too tired to play with him. What he doesn’t understand is that I am chronically ill and that I will be for the rest of our lives.

My teen, however, understands that permanence. He knows I am chronically ill and that I will be sick for the rest of my life. While he doesn’t necessarily understand the specifics of my illnesses, he has questions about the future and whether things will get worse for me. He worries about schedules and routines and often asks to help out. He needs reassurance that someone will always be there for he and his brother and he wants to believe that will always be me.

I may not have the answers to all their questions, but experience has taught me that my attempts at honesty hold more value than dismissing my sons with an "I don't know," or telling them, “Tomorrow will be better,” when I'm not sure that will be true. I'm not sure how I will address their concerns when they are older and if my health worsens. I just know their lives are not easy or normal because I am not healthy.

Lessons Learned

Being chronically ill may have changed me, but it has also changed my children. I know my children are kind and understand empathy more than most children their age. I know they value honesty and openness and are sensitive and caring. And, as they get older, I know they will be better prepared for life’s obstacles as a result of the lessons we have learned as a family, dealing with and managing the effects of chronic illness.

I, too, have learned some valuable lessons. I have learned that removing guilt is best for my children and me. I cannot be the parent they need and deserve if I feel guilty that I am sick. Moreover, I know I cannot fight flare-ups. I just have to allow flare-ups to run their course so I can recover and go back to giving 100 percent to my children.

I know hiding my symptoms from my children only scares them. By sharing what I am feeling, I am allowing them to feel involved and I remove uncertainty. Further, I have found my children are more resilient and more empathetic than I ever imaged they would be.

I have learned to appreciate the days where I feel healthy, strong and on top of my game, and I have learned to make those days count.

Finally and most importantly, I know that being sick does not make me a bad parent. If anything, I try even harder to make my parenting count.

We Are Not Alone and We Are Good Parents

There are millions of parents living with chronic illnesses and trying to balance being sick and raising children. We are not alone and we are good parents. We are responsible for both our own health and for our children’s security. That means we continue to be parents despite chronic illness and we pay particular attention to how our children are affected. Sometimes that means parenting through the pain and fatigue in order to offer them a sense of normalcy, and other times it means leaving the channels of communication open between you and them.

Much has transpired since those first few months after my diagnosis. Since then, I have learned to better manage my disease with medication and good nutrition choices. While I am not asymptomatic, my chronic illnesses have not taken away my ability to be employed or to care for my children. Granted, I have had many moments in the past few years where I questioned my ability to balance my chronic illnesses and my parenting. Nonetheless, knowing that I am raising kind, caring, honest and prepared children allows me to question my parenting less.

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