WHAT HAPPENS WHEN YOUR RARE DISEASE CHILD PULLS YOU AWAY AT WORK?

Balancing work responsibilities with the needs of a child with a rare disease is incredibly challenging! Does this sound familiar? Well, if you're in this space than you know that this is more normal than not. This has happened to me too many times to count. It has resulted in loss of jobs, relationships, and friendships. It took me a few years to navigate the balance. Now, I would never question anybody's priorities of their children coming first, yet we see that society has very little patience for our world. I have realized that not all will agree on how to work and care for our special needs children, but here are some strategies that might help.

Open Communication with Your Employer: 

Be transparent about your situation with your employer. If possible, negotiate a flexible work schedule, remote work options, or the ability to take breaks when needed.

Set Clear Priorities: 

Prioritize your tasks at work and at home. Focus on the most critical work tasks when your child is stable, and be ready to shift gears if your child needs immediate attention.

Create a Support System: 

Build a network of people who can step in when you can't be there. This could include family members, friends, or a hired caregiver who understands your child's needs.

Emergency Plan: 

Have a plan in place for emergencies. This might include a list of contacts, instructions for your child's care, and a quick way to notify your employer if you need to leave work suddenly.

Self-Care: 

It's important to take care of yourself so you can be there for your child. This might mean setting boundaries at work, asking for help when you need it, and taking short breaks to recharge.

 Utilize Resources: 

Look for community resources, support groups, or nonprofits (like Project Sebastian) that offer assistance. Sometimes, there are programs designed to help families in your situation.

Advocate for Policy Changes: 

If your workplace doesn't have policies that accommodate your needs, consider advocating for change, either within your company or through broader initiatives.

Balancing work and caregiving is an ongoing challenge, and it's important to be gentle with yourself as you navigate these demands.

Be well ~Christopher