The Hardest Part Isn't The Caregiving

What wears me down isn’t caring for my children. It’s everything I’m required to do around that care.

The forms. The phone calls. The hours on hold. The appeals. The annual reports. The documentation. The constant need to prove that my children need the things they clearly need.

It’s honestly a full-time job that I somehow fit into my other full-time career as a mom. 

And none of this is happening for just one child. At different times, I’m navigating all of this for three of my children—and lately, sometimes four. Each one comes with different offices, different paperwork, different people to call or meet with and different rules I’m expected to understand.

The difference is that being their mom—the caregiving, the routines, even the days that can feel a little like Groundhog Day—is familiar. There’s actually something comforting about that rhythm. I know my kids. I know what they need. And caring for them is one of the ways I know how to love them best.

The hard part is everything I have to navigate beyond that.

Take Medicaid. I can call the same Medicaid number twice with the same question and get two completely different answers. 

You learn to write down names, dates, case numbers and exactly what you were told because you may need to prove later that the conversation even happened.

Over the years, I’ve learned that advocacy is its own form of caregiving. It just doesn’t look like caregiving from the outside.

I’ve also learned that even once something is finally established, the paperwork doesn’t necessarily end. Now that we have guardianships in Florida, there are annual reports to complete. Another deadline. Another set of forms. Another responsibility to keep track of.

I’ve also learned not to accept “we can’t do that” as the final answer.

Sometimes it really means, “we can’t do that here.”

When I needed to find a dentist who could do Lily’s dental cleaning under anesthesia in a hospital, I kept looking until I found one who was willing and able to make it happen. Then I started asking what else we could coordinate while she was already under anesthesia—an EKG, an echocardiogram, blood work, even fitting her for new shoe inserts. All things she can’t tolerate while awake.

Having Medicaid doesn’t always mean having access to the care you need. We’ve spent thousands of dollars paying privately for care because the providers who could actually meet our children’s needs didn’t accept Medicaid.            

Advocacy takes time. Money. Persistence. Organization. Hours spent on hold. Hours spent searching through old emails, evaluations, medical records, IEPs and service plans, trying to find the documentation that proves a denial is wrong. Then there’s gathering everything for an appeal, making sure you have what they asked for and hoping you didn’t miss something that could matter. And sometimes it takes the confidence to keep asking questions when the first answer doesn’t sound right.

And no matter how frustrating it gets, you don’t really get to give up and walk away. The consequences don’t fall on the bureaucracy. They fall on your child.

So you make another phone call. You wait on hold again. You gather another document. You fill out another form. You research. You go to another medical appointment. You sit in another meeting. You go to another court date. 

Because giving up doesn’t hurt the people making the decisions.

It hurts your child.