Being a parent is so many titles wrapped into one word.
A parent is a go-to resource for all things. They are untrained nurses, teachers, personal assistants, housekeepers, stylists, chauffeurs, hairdressers, coaches, cheerleaders, and the list goes on. When you are a parent to a medically-complex child or a child with a disability, you level-up on what’s preexisting (because you have to) and add some more qualifications to your resume. Namely, you must become a pretty kick-ass advocate.
Advocating for my son is a skill that developed within me over time. It came as a part of my protective instincts and became more refined with each passing appointment. As someone who is, by design, relatively soft-spoken, I was surprised at how comfortable I became in the role of advocate. I suppose it was just second-nature to speak up for the voiceless, especially my own child. I learned the lingo, became familiar with the system, and mimicked what I was taught. I rocked this advocacy stuff proudly and my usually soft-spoken self found a public voice.
I was recently filling out some initial paperwork for a state program – another thing that I’ve become very skilled at. If you’re unfamiliar, it looked like standard forms you’d see for a school district, and there were signature lines to populate throughout. Where you would usually see “Parent Signature,” however, the prompts read “Advocate Signature.” It knocked the wind out of me like I had been physically hit in the stomach. It was an odd and unexpected reaction. When did I become an advocate instead of a parent?
Of course, I know the intention of this. Unfortunately, not all children have parents and sometimes hired representatives are the ones handling this part of “parenthood.” I think, however, this label on paperwork that I may not remember a month from now tapped into an insecurity within me.
You see, so much of my days are spend organizing, planning, scheduling, regulating, administering, and balancing, I sometimes wonder what it feels like to be a parent. I feel like a caregiver and like this life is just “business as usual.” In this moment of staring down at “Advocate” where “Parent” should have been, I felt torn down.
Parents of medically complex or disabled children carry around invisible baggage. No one on the outside knows the weight because we are accustomed to doing what we must do. We weren’t given a choice, and, as parents, we will do anything for our kids. Part of the weight isn’t related to our duties, though. It’s emotional.
It’s being bombarded by internal thoughts of what a “parent” should be doing and what I feel like I’m not. It is wanting to cry but knowing that tears mean pity. “I am not weak,” I say to myself, knowing that I am strong but breakable all at once. It’s constantly being stuck between caregiver, advocate, and mother, trying to decide what’s best and wishing to be just “mommy” for once. It is a body and mind ready to quit, but a heart knowing that there’s still more that needs to be done today.
The weight of these emotions is the driving force behind our strength. It’s what makes us great parents to our kids that need our strong voices. That doesn’t mean that it’s not heavy. That doesn’t mean we don’t need reassurance that we’re doing okay. That doesn’t mean we’ll refuse a hug or a shoulder to cry on.