More Than a Caregiver
In the summer of 2020, I developed hives. It started with one on my hand, then a couple on my arms, and the next thing I knew: my whole torso was covered. The current heatwave, of course, wasn’t helping but having been in the air conditioning, I knew that wasn’t the cause. It was at the point of no return, the palms of my hands and the soles of my feet were riddled with splotches of itchy red bumps, that I called my local urgent care. A telehealth visit with a doctor determined that I was having my first (but not my last) bout with stress hives.
I was absolutely miserable, itchy to the point of pain, but on a Sunday night, I really had no choice but to wait until the pharmacy opened on Monday morning and just try to combat the itch. With a sleepless night ahead of me, I decided that it would be best to take off from work the next day – especially with orders to “minimize stress.”
Hi, I’m so sorry for the inconvenience, but I will not be in the office tomorrow. I’ve come down with a bad case of stress hives. I’m hoping that I’ll be able to keep my stress down and return on Tuesday. I’m hoping that, even with Flynn at home, I can just stay calm and heal.
Okay, thanks. Feel better. It must be really hard to be a caregiver.
It is really hard to be a caregiver.
I am the one who makes all of the appointments. I handle the supplements and medications – dispensing and stocking. I communicate with my child’s care team and design plans of action. I am a tireless advocate for change to better this world for my child, and for all. I attend every therapy session and have binders, file folders, and stacks on my desk (let’s be honest) of notes, strategies, and paperwork so that I can continue the work at home. I am the contact for all things medical, OPWDD, OT, PT, speech, feeding therapy, special education, school, and anywhere else we go. I am the knower of all pains and the encyclopedia of treatments. I am the master of meltdowns and the calm amongst chaos. I coordinate, plan, communicate, fix, constantly fulfill life care and mobility needs, and so much more.
But those of us who have children with disabilities or are medically complex, we are so much more than caregivers. We are parents who have, somehow, been stripped of their parenthood and are just seen as someone who provides care. But we are parents, first and above all else.
We love to the ends of the Earth. We raise human beings to thrive in their world, whatever that may look like. We know best and won’t stop until it’s attainable. We cry in times of hardship just as much as we weep with overwhelming pride. What others see as “extra” care is just intertwined with our day-to-day. It’s part of our parenthood.
So, yes, it’s true: It’s hard to be a caregiver. It's a thankless, around-the-clock job. But it’s also really challenging to be a mother. Because, after all, that is what I am. I am more than just a caregiver.