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Caring for a child with medical complexity is extremely demanding. If you have childcare responsibilities and/or a career or job outside of your home, you may encounter both logistical and emotional conflicts. These may require you to make difficult decisions that lead to feelings of loss, resentment or guilt. On the other hand, you may find some freedom and empowerment in work. You may also find that you are constantly reevaluating your priorities.

Your Team:

Financial Planner

A professional who can help families manage their financial affairs and work towards their long-term financial goals.

Estate Planning Attorney

A lawyer who specializes in managing assets in the event of incapacitation or death.

Accountant

A professional who handles bookkeeping and sorts out the financial documents.

Psychologist

A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.

Social Worker

A trained professional who works with people, groups and communities to help them better their lives.

Attorney

A lawyer.

A financial planner, estate planning attorney, or accountant can help you determine your family’s financial needs. A psychologist or social worker can provide a neutral space for talking through any concerns. If your company offers an employee assistance program, the team will be able to advise you on the rights and benefits specific to your workforce. If not, a social worker or an attorney can provide information about your rights under the U.S. Family and Medical Leave Act of 1993.

Choosing whether to work during your child’s illness—or having the choice made for you out of necessity—is very personal. Your family may depend on your continuing to work, even if it is not your preference. If work is very important to you, this may feel like a duel between two identities: yours as a parent, and yours as a member of the workforce. If you decide to keep working when you don’t have to for financial reasons, you may feel judged by others. You may also feel pressured, especially by family members who feel that you should be at home.

How you show love for your child and family comes in many dimensions. One of them is to provide as secure a life as you can. Another is to nurture emotionally. And another is to take care of yourself, to be as whole a person as you possibly can be. Stay-at-home parents and working parents both strive to be loving parents. What will help you feel that you are being the best parent you can be? That is both a practical and personal decision.

“There is nothing I wouldn’t do for my children, but they do not require my constant presence in order to thrive. Working allows me to give them the very best of me.”

– Casey, parent of Annabel

Financial Considerations

The financial burden of caring for a sick child prompts concern and even fear in many families. If you have other children with special needs and/or are dependent on government support, you may already be familiar with the “system,” which is complex and challenging to navigate. Your organization’s human resources department can help you understand what health insurance coverage can be available to you and can direct you to other services. Social workers are an important source of information about how to get resources for your child and family. If you are parenting alone, you will need to consider the financial resources available to you—especially if you cannot or don’t wish to work outside the home. If you are a couple or are co-parenting and have sufficient income, one of you may choose to stay home. But if you don’t have sufficient income or insurance coverage, it’s possible that the working parent would have to take a second job to support new costs and lost wages.

Work and Identity

For many adults, working is much more than a source of income; it is a critical part of their identity. While having a sick child demands changes in priorities, wanting to achieve career goals and not lose ground may weigh heavily on some parents. Working may also provide a sense of balance and comfort. Being out of the home and in the presence of others, setting and attaining goals, and getting positive reinforcement—along with a paycheck—can be very appealing and helpful.

This is a natural conflict—with a “should” answer (child first). “Should” can produce guilt in a parent who wants or needs it to work. If you have other children, you may worry that you will be unable to balance all of your responsibilities—which just adds to the feelings of guilt and stress. A working parent also may feel out of touch with what is occurring at home, at medical appointments, in the clinic or at the hospital. These are topics you may wish to explore with your co-parent, possibly in the presence of a counselor.

The Workplace

If you are working, you may have concerns about what and how much to disclose to your manager. You may wish to start by being factual: this is what has occurred; this is what we know; this is my plan and what I need to work (for example, working from home, changing your schedule, etc.).

In the ideal scenario, colleagues will be empathetic and accommodating. Hopefully they will want to be helpful, but they may not know what to say or do. You can help them by periodically sharing about your child and letting them know that you are comfortable talking about your child. Or, you can make clear that you don’t want to discuss your child at all. This is entirely up to you.

If an employee assistance program is available to you, the team can be very helpful as you negotiate the terms of your employment and navigate this journey.