In the Beginning

Forest at Dusk

Forest at DuskHere’s the thing: in the beginning, everyone is lost and alone.

No matter how a person goes from being parent to parent of a child with disabilities, in the beginning the world turns itself ass-end-up.

Whenever the news comes or the realization dawns—during pregnancy, immediately or shortly after birth or adoption, or later—there is a period of disoriented scrambling that is made up of some combination fear, grief, and shock.

In the beginning, the air is filled with new words—diagnoses, symptoms, tests, therapies, medicines, treatments, programs, prognoses, so many acronyms—and schedules are thick with new places to go and new people to see.

All at once, there are arrangements to be made, waiting lists to which the child’s name must be added, professionals’ credentials to be verified, sources of assistance to be researched, potential therapies to be chosen.

And meanwhile, the grief and fear.

We take our children everywhere, make sure they have every evaluation, test, and assessment, travelling across town or across states or across the globe. We drive them to see the best available health care providers we can access, sit up all night researching medical and educational options. We learn to provide care at home or spend hours sitting in the hospital. We learn new methods of discipline, feeding, communicating, educating, loving—whatever our children need, we try to find a way to provide it.

And meanwhile, the grief and fear.

We wait. In between crises, we wait. We wait in exam rooms and hallways; we wait for phone calls and lab results. We wait for meetings, appointments, and insurance company decisions. We wait on schools, therapists, and doctors as we claw our way through layer after layer after layer of red tape.

We learn a new language. We learn what our insurance companies will and will not cover. We learn special education law. We learn the intricacies of our children’s diagnoses. We learn how to take care of our kids under extraordinary circumstances. Some of us learn to say goodbye.

And meanwhile, the grief and fear.

We show up. We arrive early, well-prepared, steely-eyed and strong, for confrontations with educators, health care professionals, and insurance company representatives.

We don’t cry until we get home, usually.

We find educators and health care providers who will give our children what they need and we weep with gratitude.

And meanwhile, the grief and fear.

People tell us we are heroes. They ask how do you do it and they say you must be very special. They say I could never do what you do.

And we smile because we know this secret: that we are utterly ordinary.

Some people tell us that we are fools. They question our decisions about treatment, ask us if we have tried diet X, therapy Y, or system Z. They wonder aloud about causes, ask probing questions, look at us with one eyebrow cocked.

And we smile because we know this secret: that there is no right thing to do and there is no wrong thing to do. There is only the next thing to do.

And meanwhile, the grief and fear.

The landscape around us is unfamiliar as relationships change. Some friends disappear; some family members judge us. Marriages are strained and some of them rupture. Siblings feel hurt, angry, and afraid.

Our economic lives are violently altered as days are missed from work or jobs are quit or lost and medical bills grow to outsize proportions.

Our own health suffers. We struggle to find the time and energy to attend to our own needs for healthy food, exercise, and medical care. We lose many, many hours of sleep.

We earn our PhDs during the wee hours of the night, studying, researching, questioning, agonizing, wondering, and wringing our hands. We discuss, consult, and discuss again. We watch our children, attuned to every slightest shift. When medications or therapies change, we turn up the gain on our radar until we jump at every slightest twitch or sound.

And meanwhile, the grief and fear.

Here’s the thing: in the beginning, everyone is lost and alone.

Here’s the other thing: in the beginning, everyone feels like the only person who has ever felt so lost and alone.

Eventually, the beginning begins to end and we find that our feet are under us, that we have found a new normal. We discover that we are ourselves again; changed, to be sure, but released from the shock that has blistered us for months or years.

We create a new life for ourselves and our families; not at all what we expected, built with tape and paper clips and bits cast-off string, but we find that we have become adept at making things work, even when nothing works.

We find new friends to replace the ones who left us. We find support for ourselves and find that we are better able to support our children.

And meanwhile, the grief and fear, now shared.

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19 thoughts on “In the Beginning”

  1. Oh, Adrienne, this is another one of THOSE posts of yours, the ones I will go back to read again and again because they have touched me so deeply, spoken a truth I recognized but had not yet named. Thank you, my friend for your wise words, born of pain. I am glad you are part of my connection; my grief and fear, shared.

  2. This was so great to read. So informative and eye-opening. I work part-time at a cancer hospital. I used to work there full-time before my oldest was born. I just go back here and there through the years. I was there this week and spent time with a 3-year-old and his mother who was recently diagnosed with a brain tumor (the 3 y/o). Thank you for helping me see her perspective more. I guess you could say cancer is a disability of the most awful kind.

  3. You have an amazing way of giving perspective. I always look at the world a little differently after reading one of your posts about Carter and the role that has been thrust upon you and your family. We all have the ability to adapt to our situations, but having a mentally ill child can turn an ordinary person into an extraordinary one.
    Love & martinis!

    1. Shawna, thank you! I love that your perspective is shifted. When that happens I know that we’ve made a connection between two screens and I’m so happy about that.

  4. It’s nice to have found others who get it, and who also have a new normal. Even though we can’t meet up for coffee, we can still help each other get through the day. Thanks for getting it.

  5. This:
    And we smile because we know this secret: that we are utterly ordinary.
    and this:
    And we smile because we know this secret: that there is no right thing to do and there is no wrong thing to do. There is only the next thing to do.
    and this:
    And meanwhile, the grief and fear.

    My children are okay. Utterly ordinary even. But I come from two mentally ill parents. And as they age into needing more care again, especially my mom who is in end-stage emphysema, denial and her usual angst, making it near impossible to help, I find myself exactly there.

    xox. I do so love your writing, mostly because you are very good at making it the “anywoman”. I plan to share this post, far and wide.

  6. This was awesome to read. The grief and the fear is real. The feeling alone is real. Finding your way, no matter how haphazard, is also real. I don’t know if I’ve ever commented on your blog before but I’ve been reading along for a while and I’m addicted.

  7. Its a good thing that you’re a word person. Too bad your life has been surprised in the ways it has been but good for you and your readers that you can’t keep from saying it all out. Keep on keepin’ on since its all there is to do.

  8. I am new to your blog and need another blog on my blogroll like I need another day of my daughter’s seizures, but I know that I will be adding yours to my list!

    What a beautiful post — I so look forward to reading more.

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