Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the Home

Every day, parents and caregivers of children with rare diseases face emotional, financial, and logistical challenges. These challenges force us to make sacrifices to ensure that our children get what they need. It is often during these times that we also want more fulfillment for ourselves — a sense of purpose and financial gains.

Through my experience of becoming a rare stay-at-home mom at the age of 22, I learned that sometimes staying home is the only option. Money was always tight, and I often struggled to get by. Feelings of guilt often flooded my head as I knew that I wanted more for my kids. Through my optimistic attitude, I reminded myself that one day, it would be worth it, and we would have the life we all deserved.

The decision to return to work is not easy

Balancing the emotions that come with rare parenting and transitions almost always are complex. The decision to return to work outside of the home while caring for a rare child may come with tears and uncertainty.

This article is not to point fingers at those who choose to stay home with their children; sometimes, there truly is no other answer. We know what our children and family need, and whatever route you choose is the best one. You can adjust as the needs of your family change.

Financial considerations

Although returning to work can increase income, which could mean less financial strain, there is often more to be thought about to make sure the benefits outweigh the negative. 

• Will the pay put you outside state benefit guidelines? Would this cause you to lose money after medical expenses and therapies are paid for?
• Do you have backup plans for health insurance in case you get a small pay increase and no longer qualify for Medicaid?
• Will you have emergency days off, sick time off, and unpaid days to use within your salaried pay?
• Will your employer respect and understand that though you may be an amazing employee, you still have to be a parent to your rare child amongst nothing else?

Though I am no expert, I highly suggest that you draw out scenarios A, B, and C and be prepared to draft a plan D. Nothing is 100 percent predictable. However, being proactive and weighing out each situation positively and negatively can help you determine if this opportunity is meant for you.

The emotional and mental tolls

The transition of returning to work out of the house after being a full-time caregiver can cause high levels of anxiety and guilt. Acknowledging your feelings is the first step in the right direction. Talking through emotions as they come and doing your best to maintain a positive attitude can make the transition easier for everyone in the home.

If your child is nonverbal or does not completely understand, still talk to them. They take in every sound and word you say, and if they could, they would tell you how much they appreciate the conversation. Remember, transitions take time.

Communicating transition to your care team

Before officially accepting an out-of-the-house, full-time job, I set up in-person, virtual, or phone call meetings with my son’s care team to chat about where my son was and what our next steps should and would be.

During this time, I made sure to ask the professionals their opinions on what I was doing so that I did not start a new job if we needed more treatments. By doing this, I could go back to work with our team using new communication methods, removing a huge weight off my shoulders.

Care team members now knew that they needed to contact me before work hours, during my lunch break, or after school hours to be able to reach me. Otherwise, we would need to follow up through email or the hospital portal. Although I was returning to work, my dedication to my son’s treatment was not changing. I was doing what was best for our family.

Setting up specialist and therapy appointments

Even being the parent working full-time, the demands of being a rare mom haven’t stopped. It is often still on me to coordinate my son’s care. The switch from attending therapies and specialist appointments while my other kids were in school or with a sitter has now transitioned to in-service days, holiday breaks, or summer breaks. Our weekly and bi-weekly outpatient therapies have now transitioned to monthly sessions after school hours. Scheduling far in advance is a great way to take things off your plate.

The guilt of not being able to “do it all” has been overwhelming. However, I know that because of my willingness to learn, I can supplement at home what my son is learning in these therapies, ultimately leading to a more positive and less stressful home environment for us all.

The choice belongs to you and your family

In the end, the decision to return to work outside of the home when being a rare caregiver is a choice that you and your family need to make carefully. It requires careful consideration of finances, emotional well-being, and everyday life. When acknowledging the difficult parts of this decision-making process and finding ways for flexibility and outside resources, you can form a path forward that benefits your child and yourself. This mindset will take effort and an optimistic attitude, but with those 2 things, I believe anything is possible.