What I Know and What I Don't

MER publishes one of my poems; plus: DOJ sues Maine for lack of behavioral health; and Forbes offers resources for working parents of disabled children

Hello readers,

I have something special for you today. Online literary magazine Mom Egg Review (MER) just published a collection of poetry and creative nonfiction based around the idea of Medical Motherhood. Folio editor Sarah Dalton reached out to invite me to participate in the collection, saying that the effort was inspired by this very newsletter, as well as her own work and memoirs by Heather Lanier, Taylor Harris and Adiba Nelson.

I was honored to participate and happy to find a home for this poem that I wrote several years ago after sobbing late at night in a Wal-Mart parking lot in rural Oregon. My then-7-year-old son with multiple disabilities had sustained a serious injury when the following E.R. trip occurred. I had needed to collect myself before heading back to our vacation spot with the first aid supplies I’d bought.

While edited and massaged, this is essentially what tumbled out that night. I’d be happy to know how it makes you feel, and if it makes you see things in a new way.

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What I Know and What I Don’t

by Shasta Kearns Moore

You’re looking at me like I don’t know.

And you’re right, hospital staffer: I don’t.

I don’t know what all your acronyms mean. I don’t know the difference between ketamine in a nasal spray and ketamine in an IV. I don’t know what dosage his weight requires. I don’t know how bad this injury is. I don’t know whether the adrenaline coursing through my veins and my child’s blood-curdling screams during the 20-minute (or was it 20 hours?) drive here of “I’M GOING TO DIE!!” are even remotely warranted.

Hell, I don’t even know who you are. Who are you to my child?

Are you the CNA, the one I see most often but who has practically no authority to do anything? Are you in that weird new middle class of medical personnel — the land of physicians’ assistants and nurse practitioners and actual honest-to-God registered nurses? Or do I need to ask for a triage nurse or a charge nurse to get some shit done? Or the doctor? Or the specialist?

Oh, you noticed that, huh? I didn’t know but now I do. I’m starting to learn the difference between you all. I don’t waste my time explaining things to the third-in-command anymore. I’m learning.

Because even though you’re looking at me like I don’t know, I do know some things.

I know that my child is not like other children. I know most parents feel that way, but in this case it is true. I know he comes into this situation with trauma scars and he will come out of it with trauma scars and therefore you MUST up your game RIGHT NOW.

I know that when he gets calm, you think he will tolerate you and your prodding. But I know that the tiger is never caged.

And I know that you don’t know how to tell him what to expect during this hospital stay so it is up to ME — and all-the-things-I-don’t-know-but-am-rapidly-trying-to-learn — to prepare his terrified little self.

You may know a lot of things. You may know if this situation is serious. You may know how the drugs he takes every day will interact with the drugs you are about to give him. You may even know his weight down to the gram.

You know how to patch him up, and now that you have, let me tell you what I know.

I know how serious his injuries can be because I’ve seen him fighting for every damn breath. And I know how long it took to find the right concoction of daily drugs. And I know what happens when he doesn’t get them.

And I know my arms are strong enough to carry him out those double doors home, because I’ve done it before.

And I’m doing it again. Right now.

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We have to learn how to navigate so many things as medical mamas. The hardest one, in my opinion, is learning how to own our expertise in our own children. There is so much we don’t know, but our kids need us to. Anybody else feel this way?

You can read MER’s entire Medical Motherhood collection. Every one I’ve read so far has given me goosebumps.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From : “Department of Justice sues Maine over treatment of children with behavioral disabilities”

The Department of Justice has filed a federal lawsuit against Maine for “unnecessarily segregating children with behavioral health disabilities in hospitals, residential facilities and a state-operated juvenile detention facility.”

The lawsuit, filed Monday in U.S. District Court in Portland, says Maine is violating the Americans with Disabilities Act and the Supreme Court’s Olmstead decision. Federal authorities had notified the Mills administration in June 2022 that it was violating the civil rights of disabled children and could face legal action.

“The state of Maine has an obligation to protect its residents, including children with behavioral health disabilities, and such children should not be confined to facilities away from their families and community resources,” said Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division. “The Civil Rights Division is committed to ensuring that people with disabilities can get the services they need to remain at home with their families and loved ones, in their communities.”

Carol Garvan, legal director of the American Civil Liberties Union Maine, said it is unusual for federal authorities to take this step, as typically when states lack services for children with disabilities, the deficiencies are most often resolved prior to a federal lawsuit.

“The situation here is dire,” Garvan said “We have been raising concerns about a lack of behavioral health access for years.” […]

Advocates have long decried Maine’s behavioral health system, arguing that there are not enough services available for the demand, in part due to a systemic workforce shortage. The crux of the problem, advocates say, is that reimbursement rates the state sets for Medicaid mental and developmental health services – while they have improved in recent years – have not kept up with what other employers are paying. That has led to the closures of group homes and restricted services while demand grows.

The lawsuit detailed wait lists for an array of community- and home-based mental and developmental services, and found that average wait times to receive help ranged from a low of slightly under six months to nearly a year. Some children were waiting nearly two years to get help. Monthly wait lists for certain services had more than 400 children waiting for care.[…]

• From Forbes: “Effective Tools For Working Parents Raising Special Needs Children”

(See our note on language.)

One in five American children has special health care needs, often requiring extensive care and services. Families of these children demonstrate remarkable resilience, creativity, and financial planning as they navigate complex healthcare systems and invest in specialized therapies.

Despite their resourcefulness, the financial and emotional burdens are significant. The ongoing need for specialized care, therapies, and educational support creates a continuous financial strain that many families must navigate. Working parents of children with disabilities often face steep financial challenges, needing 17.8% more income annually, with the cost of raising a special needs child averaging $2.5 million—nearly ten times the cost of raising a non-disabled child. These financial pressures are compounded by higher rates of medical hardship, with 16% of families with special needs children struggling to pay medical expenses compared to just 7% of families without disabled children.

[…]For these resilient working parents and their growing children to truly thrive, they need powerful support systems, essential resources, and practical tools across these critical areas:

Employee Community, Benefits, and Advocacy

Building a strong support network at work can empower parents, enhancing their ability to balance responsibilities, leverage their strengths, and thrive professionally and personally.

[…]Government Programs and Benefits

Government programs like […] Medicaid waivers offer critical support that empowers working parents to access services, enhance their children’s development, and improve overall quality of life. […] For disabled children, Medicaid waivers expand the services, including in-home care, therapy, and other critical services. Early application is necessary due to eligibility criteria and potential waitlists.

[…]Legal, Financial, and Long-Term Planning

Advocating for inclusive work environments includes understanding legal rights under the ADA and FMLA. The ADA prohibits discrimination against employees based on their association with a disabled individual, such as a child. It requires employers to provide reasonable accommodations, including flexible work hours, remote work options, or modified duties. The FMLA allows eligible employees to take up to 12 weeks of unpaid, job-protected leave annually to care for a family member with a severe health condition, including children with special needs, offering flexibility to manage caregiving tasks.[…]

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