AARDA Blog

My 6 year old sat beside me on the couch, tears streaming down her little face. “When we start talking about this my eyes water like I'm gonna cry!” she wailed, and buried her face in my arm. My 8 year old was on the other side of the room, also in tears. She had begun this particular conversation about the dreaded “this” (my declining health) by asking me if I was going to die.

Living with chronic illness is difficult; those challenges are doubled when you are the parent of young children. Your disease makes it hard to perform routine tasks and take care of yourself, yet you are still responsible for the physical and emotional well-being of these worried little people. There are three main issues I deal with in terms of parenting while coping with chronic illness: addressing my children's fears, handling everyday life and routines, and keeping life as normal as possible.

Their Fears

I suffer from multiple autoimmune diseases, including RelapsingPolychondritis, Meniere's Disease, and fibromyalgia. I am more often than not in pain, shaking, dizzy, and nauseous. I am currently on medical leave from work. All this means that my health problems are very visible; I can't avoid talking about them even if I wanted to. I don't promise my kids I'm not going to die; I will someday. I do reassure them that there are plenty of people who will be here to take care of them, that they will go to the same school and participate in the same activities. Young children's fears are often practical in nature and simple explanations are key. According to experts, talking about it with your kids is always the best, if not most comfortable, route.

Everyday Life and Routines

How do you handle the needs of a family when symptoms and side-effects leave little energy for household tasks? My main tips are to stay organized and ask for help! Since others often run errands for me, I keep lists of what I need from various stores, along with applicable coupons. When someone asks, “I'm running to Target, do you need anything?” I can quickly scan my lists and answer. Meal prep is another big area that requires organization. A detailed grocery list and menu plan is a must! If you have multiple people in your home to assist with childcare, etc., consider a Home Management Notebook . Friends and family want to help, they just need suggestions. When groups of people (such as coworkers or a church) ask how they can help, suggest restaurant gift cards. Neighbors? Lawn care. Ask the parents of your kids' friends to host playdates and provide the transportation.

Keeping it Normal

When my girls complain about the things I can't do anymore, such as shopping, driving them to school, and bowling, I counter with a list of things I can do! Watching movies, doing crafts, playing computer games, and reading are all fun things we still do together. If I can't participate in an activity, I try to attend and cheer them on. If I can't attend, I send someone along with a camera to capture photos or video. My mom had a chronic illness when I was growing up, and she made a real effort to participate in my life anyway she could; I remember that well now. Cultivate a gratitude attitude to help everyone keep perspective. Maintain kids' schedules and activities as much as possible. Enjoy your time with them. Let go of the guilt.

About Guest Blogger Rebekah Doak:

Rebekah Doak holds an MEd. in Curriculum Design and is an Early Intervention Specialist, serving families touched by autism through the utilization of the P.L.A. Y. (Play and Language for Autistic Youngsters) Project.

She suffers from multiple chronic health conditions including Relapsing Polychondritis, Meniere's Disease, and fibromyalgia. Her life is a continuous balancing act among family, work, and personal pursuits.

She is passionate about a great many things- books, crafts, helping those with autism and chronic illness, family, and photography, to name a few.

Rebekah blogs about her passions and finding inspiration and creativity in the everyday at www.reflectionsbyrebekah.blogspot.com. She lives in Ohio with her husband and two daughters.You can contact her through her blog or at rdoak03@yahoo.com.