“Grief is not limited to sorrow. …Grief is truly that natural and normal reaction to loss that can have conflicting emotions.” — Katie Greer

A pretty woman with dark black curls, hazel eyes, tan skin and a bright while smile poses for the camera in a bright red shirt. — Katie Greer

We dive into hard topics here and this week is no different. Fortunately, my friend Katie Greer, a grief recovery specialist with The Satellight Project, has the knowledge and the attitude to make sense of death and other loss.

Katie and I met through my sons’ co-op preschool. I was the outgoing board president and she was incoming, so we spent some time together bonding over paperwork and filing systems. She was one of those upbeat, cheerful people who was always had a beautiful smile and a kind word for people.

Just a few months later, our small Oregon community was devastated when word came that Katie’s 4-year-old daughter, Marissa, had died in a tragic accident while the family was on vacation in Mexico.

Katie’s world would never be the same. She’ll be the first to tell you that the grief will never “go away.” But through a technique called the Grief Recovery Method, she found her smile again and she’s now helping other people navigate through the many emotions that come after loss.

We sat down recently for a conversation about motherhood, grief and what to do — and not do — when you or someone you know experiences the loss of a child. You might not think a conversation about grief and the loss of a child would be a fun listen, but that’s the thing about grief recovery: we find the light through the cracks in our hearts and learn how to laugh again in spite of it all.

We’ll answer questions like:

Can parents grieve the “loss" of the child they thought they would have when confronted with a disability diagnosis even though that child was never real? If so, how do we keep that sense of grief and loss from affecting the child as they grow up so that they don’t think they are not enough?

And:

Many medical mamas, such as those of children facing cancer or organ failure, live in a community in which children die. How can we respond to lift up those parents?

Listen to our conversation at this link or in the player above. Also, give The Satelight Project a follow on Instagram where Katie regularly puts out inspiring and relatable posts.

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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 Oregon Public Broadcasting: “New report outlines steps to make Oregon early childhood programs more inclusive”

According to federal data, about 48% of young children experiencing disabilities in Oregon receive all services in preschools and other early learning settings.
And according to a new report, Oregon programs still have a ways to go in being fully inclusive.
“Since the Individuals with Disabilities Act was developed 30 plus years ago, children experiencing disabilities have limited access, or are often asked to leave care even in preschool,” said Oregon Department of Education Early Childhood Coherent Strategies Specialist Meredith Villines.
“So we’re hoping to change that.”
Oregon, along with Illinois, was awarded a national grant to help create a framework for what inclusion should look like in early learning programs.

• From the Nashville Tennessean via Commercial Appeal: “Tennessee families tangled in Katie Beckett program red tape worry funds are going unspent”

Two years ago, Mallorie Hatcher was one of the loudest voices advocating for the Katie Beckett program in Tennessee, the last state to set up a comparable program for families who make too much to qualify for Medicaid but are faced with astronomical medical bills.
Today, the Johnson City resident and other families say the program is not working as intended for families desperate for assistance and relief.
“It was progress and a step in the right direction. I’m not discrediting that,” Hatcher said. “But they really need to know what is happening behind the scenes, how inaccessible a lot of the benefits that we’re supposed to be getting are, how much red tape we have to go through to get anything we need. It hurts that much worse because we put that much effort and energy into this being a reality.”
[…]Tennessee Disability Coalition Director Carol Westlake questions why the program was bifurcated from the start. TennCare is careful to control costs, which Westlake said she understands.
But it shouldn't lead to "slow-walking" enrollment and leaving funds on the table, she said.
"There’s very frequently this tendency to imagine that everyone is going to try to cheat and game the system," Westlake said. "Are there people who do that? Absolutely. But should you develop a program predicated on the belief that people are going to try to cheat or game or get too much? You develop all these complexities to ensure that nobody gets something they don’t deserve, and it creates a hugely bureaucratic system.”

• From Disability News Service (U.K.): “[Special Educational Needs] green paper suggests government is finally dumping Cameron’s ‘end the bias’ policy”

[Former U.K. Prime Minister David] Cameron’s pledge in his party’s 2010 general election manifesto (PDF) led to successive Conservative-led governments focusing on building new segregated special schools, and increasing the number of children attending special schools.
[…]The Right Support, Right Place, Right Time green paper is now out for consultation until 1 July.
It says there are “growing pressures” across a system that is “increasingly characterised by delays in accessing support for children and young people, frustration for parents, carers, and providers alike, and increasing financial pressure for local government”.
And it says that, despite an “an unprecedented level of investment in high needs”, for many families “their experience of the SEND system is bureaucratic and adversarial, rather than collaborative”.
Among its proposals is for a simplified EHCP system; a new legal requirement for councils to introduce “local inclusion plans” that will bring together early years, schools and post-16 education with health and care services; and improved staff training.
It also promises to change “the culture and practice in mainstream education to be more inclusive and better at identifying and supporting needs, including through earlier intervention and improved targeted support”.

Medical Motherhood is a weekly newsletter and podcast that gives those raising disabled children the news and information they need to navigate this complex life. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

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Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

Medical Motherhood

How to smile again: Grief and motherhood