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The idea for Caregiver’s Manifesto started with wanting to capture a number of the most surprising, aching, and profound insights I’ve come to know while parenting a young child with a rare diagnosis and complex medical needs. In experimenting with form and voice while the piece was taking shape, I found that the words flowed most true when I approached it as part cheat sheet, part open letter addressed to the person who cares for my daughter next should something ever happen to my husband and me. Having this guardian/caregiver role pass to anyone other than my husband and myself is unthinkable to us. I don’t think he and I are alone in this fear, and so I share this piece with you.
Dear New Caregiver,
I never wanted to have to write something like this. It never occurred to me that I wouldn’t be around to care and advocate and figure it all out for the one we love. But if this experience has taught me anything, it’s that we are not in control; no amount of planning preempts the universe, or God, or fate or the circle of life. So, since you are being cast into this role overnight, with no warning I want to give you the best start possible. Tell you things I wish I had known to streamline as best I can this maddening, circuitous, staggering way.
First, you will feel, over and over again, like you are not cut out for this. Like this job is too big and too hard. You’ll feel like there is never enough you can do and you will be right about these things. The job is too big; it’s too hard; there will always be more you can do. These are truths. Many truths exist at the same time, and so here is another one: You will do what you can and this will be just right. Let go of perfect and do your best—your best and perfect are not the same thing. Accept that you cannot possibly be all things, do all things. The ways in which you are showing up are enough.
Your life now has a Before and an After. It’s okay to mourn the Before. In many ways, that life has passed away. You will have to let go of it and that will be hard. Allow yourself to grieve. The After is a new landscape. It’s unfamiliar at first. It doesn’t feel like home. It doesn’t feel like a place you want to stay. You will want to go back to Before. That doesn’t dishonor the one we love, so don’t feel bad. Slowly, the sharp edges of this strange place will soften. The air won’t feel so stranglingly cold. It will warm. You’ll realize there’s a wooden trunk next to you, and it’s packed with precious artifacts from Before. If there is something missing from the trunk, don’t worry. It was left behind because it won’t serve you here in the After. You’ll gain a new artifact in its place. Many new artifacts, most likely. Sooner or later you’ll think back fondly on the things you left back there in Before, and you will find that the way your trunk is packed now feels light, and it provides you with everything you need.
You have to shed who you were, so that you can become someone new. You’ll find that to do this you need to be better than you were before, and so you will make choices again and again to step up and show up for the one we love. You will evolve. This doesn’t make you a saint and you might broil when people try to place a halo on your head because you see how that glowing ring slips right down over your body like a forcefield, sealing you off from everyone else when community and support are what you need the most. Pedestals are solitary places. And besides, even though you choose to become someone better than you were before, it’s actually the less than virtuous parts of your personality that are key to your survival and success. Selfishness, stubbornness, your inner renegade… when effectively applied these cease to be flaws.
You will oscillate between bone-weariness and consuming rage because of the ways the world is not designed for the one we love. You’ll be disgusted by people’s platitudes; you’ll want their action instead. You will seethe at the word burden because the one we love is not the burden; it’s the broken systems, our ableist society, other people’s indifference.
You are going to need support and to be given care, too. But you are going to find that most of the people you need to support you have limits and that where this role requires you to dwell is way beyond those limits. If there’s a lonelier place than that, I don’t know it.
No one has the answers you might feel desperate for – not doctors, not experts, not textbooks, not other parents of children with the same diagnosis, and certainly not your in-laws. Let the need for those answers go. Your gut is going to become your most reliable guide. Follow it. Even when people more educated than you condescend to you—persist. Your gut and what experience has taught you are more valuable than what they presume to know.
In this role, you will grieve all sorts of things and therefore you will grieve always. This is a truth. But it does not mean that you relinquish joy. You will find that both live side by side. Open up to the grief. Stand in it and let it wash over you when it needs to because this enables joy to do the same. Don’t forfeit joy for fear of grief.
Try not to be scared that you aren’t on a recognized, well-trod way. Now, you live in unknowing. Welcome. I know it feels disconcerting at first. But you can make peace with getting off The Path. When you do, you’ll feel free. And freedom is sweeter than certainty.
I did not want you to have to walk this road, but I’m not sorry that you’re here.
The way is not easy.
The way is sacred.
You will take good care of the one we love.
Among other things, Jennifer Lendvai-Lintner is a writer, teacher, student, and mom to three children. After a lengthy hiatus, Jen returned to writing when her youngest was diagnosed with Pallister-Killiam mosaic syndrome shortly after birth in 2019. Jen’s background was in teaching English and journalism, but when her journey with Hilde began, she turned the lens inward and began to explore and express this wild mother-caregiver role as she is experiencing it. A firm believer that small moves create immeasurable impact, breathing can be victory enough, and giving oneself grace is essential, Jen also believes in the tremendous power of telling our stories. You can glimpse her story by visiting her on Instagram or by checking out her website and personal blog, The Best We Have To Give.