Hey there caregiver,
We’re talking about strength today. Because, if I had to guess if you’re taking care of a medically complex kid like us, you’ve been called “strong” more times than you can count. You’ve probably been called “resilient” too. Or even “patient” or “capable”.
And honestly? You probably are all those things, and it’s nice to get compliments. But the problem is that for many of us, the support ends there.
A friend will tell us how patient we are, but they won’t offer to give us any respite.
The school district will tell us that we’re amazing parents, and then cut their therapy staff, because they know we’ll pick up the slack at home.
Society will tell us that we’re strong and resilient as long as our families suffer in silence, but that we’re needy and ungrateful when we point out the gaps in the support for our children.
And sometimes we don’t want to be strong anymore. We just want to be seen.
Here’s our truth: We’re not strong because of some innate power that we have. We’re strong because we have to be for our kids and families.
We’re strong because we have no other choice. And not just that. We also want society to see that:
We’re overstimulated from the touching, holding, beeping, talking, and everything else frying our nerves each day.
We have a short fuse that often comes out at those we love the most, because we are stretched to our limit.
We feel exhausted because caring for a medically complex child is a 24/7 job where we’re constantly on high alert with no breaks.
We have a never-ending to-do list and there is no time for celebrating accomplishments, only moving on to the next thing.
We can never let our guard down, because without support, we never know when our child might need something and not get it, if we’re not on top of everything all the time.
So yes, there is power in recognizing how strong we are.
But it’s not a replacement for the systemic and societal support caregivers and our medically complex kids desperately need.
We want those close to us to honor our strength… But still acknowledge our struggles.
To continue to compliment our resilience… But offer their support as we advocate for our families.
To commend us for how we navigate challenges… But also ask how they can help us mitigate those challenges.
Compliments are fine. But support is so much better, and while it can start with one other person, it can’t end there.
Because at the end of the day, it’s our kids who suffer when we can’t give them everything they need.
And one single person CAN NEVER do it all in our situation. We need help to care for our kids the way they deserve to be cared for, no matter how strong we are.
