Dear advocating parent,
Let me start by saying I know that you are wildly underrecognized, and I know you don’t do it for the recognition. In fact, you probably didn’t expect to be this “advocating parent.” But most people . . . they don’t truly know the depths you go to for your child in ways you never pictured yourself doing because of the circumstances you have found yourselves in—whether from birth, an accident, or whatever else life has given you.
That’s why I am writing this letter. Because even in the loneliest parts of all the things, you aren’t alone. You need that reminder. You need to know if you don’t already, that there are people out there who relate very closely to how you feel when it seems like you are the only person who can and does do what you do for your child. When it feels like no one can understand, and sometimes no one wants to.
It is likely that you or your child didn’t sign up for this. You don’t have special training. Or at least if you do now, you didn’t likely go into parenting with it. You’ve picked up a lot of skills along the way out of sheer necessity.
You show up to countless appointments and meetings with a slew of varying providers and support teams. You coordinate schedules and unexpected—but unavoidable—bills, and you look up the newest research. You add a million extras into your daily routine because they might help your child. You call insurance . . . again. You look for anything that gives them a better shot at being healthier and happier from diet to therapies to general routine.
You stay up late worrying if it will be enough. What will life look like in a month or a year? You don’t have a developmental guidebook that quite fits. There’s a lot more that feels unknown and out of control. You hide away crying. Because you love your child more than anything as they are, but sometimes you wish it didn’t have to be so hard for them in certain ways.
Advocating parent, you know your child best. You know what makes them light up and what pushes their buttons. You take extra care and extra steps to assure they feel their best even when it costs you your own best at times. And you do all of this while trying to operate in a system that you didn’t choose, one that often doesn’t recognize or always support individuals who don’t fit a certain mold, what feels like every step of the way.
Advocating parent, your work is never done. Sometimes it feels like there is no end in sight. And not in the ways you often hear friends discuss parenting. It feels . . . heavier. You try not to compare, but sometimes it creeps in. Then, so does the shame for feeling that. Because how should you feel? Again . . . no guidebook quite fits what the two of you are navigating.
Advocating parent, please know you are seen. You are appreciated. You are loved. You are never alone. You are enough. Your precious child is enough.
From one advocating parent to another, know there is always someone out there praying for you and your child. Someone who is walking a similar journey, who thinks of you, who knows your heart, your work, your endless love.
Sincerely,
A fellow advocating parent