How to Parent with a Chronic Illness

For many couples, the decision to have a child is a no-brainer. After a year or two of married life, they decide they’re ready to transition from newlyweds to parents. If they’re fortunate enough to conceive easily, a bouncing baby girl or boy may arrive within the year. Sounds simple doesn’t it? Well, not for those with chronic illness.

Many factors go into the decision to have children when you are ill:

• What are your doctor’s thoughts on your illness and pregnancy?
• Will the pregnancy make your condition worse?
• Will the treatments you receive for your illness harm your unborn child in any way?
• If your disease is hereditary, will your child inherit your condition?
• Do you have the physical strength to endure a pregnancy?
• Should you consider adoption versus pregnancy?
• Do you have the support and encouragement of your spouse, family, and friends?
• Do you have the financial resources to hire someone to help care for your child if needed?

Fundamentally, there are two issues that come into play for couples with chronic illness who desire to have children.

1. If you are able to get pregnant, how will your chronic illness impact your pregnancy and vice versa?
2. Will your chronic illness permit you to parent your child?

Just Because You Can Get Pregnant Doesn’t Mean You Should

Two years after getting married at age 37, I was determined to get pregnant and have a baby. It didn’t matter that my neurologist couldn’t tell me much about the effects of limb girdle muscular dystrophy on pregnancy or if a pregnancy would radically reduce my physical strength. It didn’t matter that I had extensive fibroid surgery two years earlier that now made a cesarean delivery my only option. It didn’t matter that my twin sister, who also has limb girdle muscular dystrophy, conceded that her body had become weaker after her two pregnancies. None of that mattered because I wanted to get pregnant!

And I did. I became pregnant and experienced the most crushing fatigue I have ever known during the first eight weeks of my pregnancy. I was exhausted all the time and had terrible nighttime nausea. I began to wonder what I had gotten myself into.

At nine weeks, I suddenly miscarried. I was inconsolable. I was 39 years old and began to wonder if I was ever going to become a mother. My husband Jeff gently brought up the topic of adoption. From the start, Jeff wanted to adopt as a way to build our family. He always believed it was a better option for us considering my physical limitations. I wasn’t so sure but began to give it some serious thought.

It took a while for me to grieve both the miscarriage and the loss of not having a biological child. On my more rational days, I truly did understand the toll a pregnancy would take on my body, the burden it would put on Jeff, and the significant amount of care a newborn baby would require. I gradually warmed to the idea of adoption. Ultimately, I decided that being a mother was more important than being pregnant.

On a sunny February day, we submitted our paperwork to an adoption agency with the hope of adopting a little girl from China. Twenty months later, we traveled to China to meet our new 4-year-old daughter, Claire. Once we returned home and got past a period of adjustment, the three of us settled nicely into our daily routine. She is by far the greatest blessing we have ever received.

It Takes a Village

Only you know whether you have the capacity to parent a child while you have an illness. No one can make that decision for you. You have to be honest with yourself about whether you have the stamina, energy, and resources to bring a child into your life and marriage.

The old adage that it takes a village to raise a child is true, especially for those of us with chronic illness. Parenting is hard work.  Breaks are few and far between even when illness is flaring or you’re struggling with extreme fatigue. But parenting well in spite of chronic illness is possible as long as you’re willing to ask for help and be creative.

Here are some tips I and others have learned along the way in our journey of parenting with chronic illness:

• Pace yourself. It’s amazing how quickly the pace picks up when you have kids.  I do my best to slow down in the early afternoon in order to conserve energy for pick-up from school and the rest of the day’s activities.
• Ask for help when you need it. You can’t do it all. It’s OK to ask for help from your spouse, family, or friends. Just be clear on what you need or how you want something done. You may even want to consider writing down instructions for the most common tasks. Most people are happy to step in and provide assistance.
• Be as interchangeable as possible. I think the strongest marriages (and families) are those in which mom and dad are interchangeable. If mom is sick, dad can step in with ease (pack school lunches, return permission slips, purchase gifts for kids’ birthday parties, etc.). There is no break in continuity or routine for the kids.  Being interchangeable takes both practice and patience but is well worth the effort.
• Create your own niche. In our house, Jeff is the physical one taking Claire on errands, including her in yard work, and going biking or hiking with her. I take on more of a nurturing role, helping Claire with her homework, doing puzzles, or painting with her at the kitchen table. Creating our own unique niche allows us to spend one-on-one time with her while playing to our strengths and accommodating my illness.
• Kids are resilient. Kids are a lot tougher than we give them credit for. They are not thinking about how unfair life is because their mom or dad is sick. Most are just busy being kids and don’t know anything different. Stop beating yourself up!
• You define “normal.” If you are self-conscious about your illness, your child will be too. Try to integrate your illness into everyday conversation and life. It’s not something to be ashamed of or embarrassed about. Teach your child by example that people can still lead happy and productive lives despite being ill.
• Create an awesome playroom. When we returned from China, I was exhausted. Traveling around China for two weeks took a lot out of me physically. Upon our return, we created a playroom in our dining room with some toys and crafts. When I needed to rest, I would lie on the couch and watch her play. You don’t need to spend a lot of money furnishing a playroom. Visit garage sales or ask friends for hand-me-down toys and games. You can also often find sales on play dough, hobby kits, and paint sets.
• Learn the language of feelings. Most nights during dinner, we check in with our SASHET feelings (sad, angry, scared, happy, excited, and tender). We use this time to express the mix of emotions we’ve experienced during the day. Claire loves this practice and often reminds us when we forget. This is a great opportunity to take your family’s “emotional temperature” and discern how your chronic illness may be affecting your spouse or child.
• Build your support team. I have a few people I go to when I really need a break due to illness or simply a night out with my husband. My husband, my mother-in-law, our high-school-aged babysitter, and my neighbor are all wonderful about giving me some much needed time to myself.
• Don’t compare. It’s tempting, and we’ve all done it, but comparing yourself to “healthy” parents is pointless. Instead of dwelling on how your chronic illness limits you, focus on what you can do. I focus on connecting emotionally with my daughter as well as showing her physical affection. She never doubts my love for her, and I speak her love language when I spend time with her. I may not be able to go sledding or roller skating with her, but I can give her my love, time, and attention.

As many people have said before me, parenting is the hardest and also the most rewarding thing I’ve ever done. I thank God daily for my daughter and the gift she is to me and my husband. In hindsight, I now know that I could not have handled a pregnancy or cared for a newborn without compromising my health. I have no regrets. Adopting a 4-year-old—who was already fairly self-sufficient—was absolutely the right choice for us.

If your heart’s desire is to be a parent, don’t give up hope. If you’re willing to think creatively, research your options, and ask for the help you need, parenting and chronic illness can coexist.

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.