When a child gets a catastrophic medical diagnosis the parent’s identity gets disrupted.

It’s no longer anchored in the same well-defined groups and associations as before.

• Because caregiver responsibilities are significantly different than those of other parents, HOW (and if) belonging happens changes.

Because of time constraints but also because of different needs, interests, and priorities, it’s easy to get isolated.

And it’s easy to beat yourself up thinking about not doing and beingthe same as before…

— All the things you’re no longer getting done...

— All the people with whom you’ve lost connection…

At the same time you know it’s impossible to be the same person because life is irrevocably and fundamentally different.

• You’re on a journey creating the best new normal you can muster.

And giving yourself grace as you adapt will help you cope better.

As you make mistakes and do it messy.

As you make the most of each day—

• through tears of grief for the life you
...

Angela just stepped away from 35 years of high-level leadership in the US federal government.

Her perspective and experience as a Black leader is painful and revealing:

— “They called me strong. But what that really meant was ‘You can take more.’ …

— ‘Strong’ wasn’t support. It was silence wrapped in praise.”

Martha, “hero” mom to a disabled child with cerebral palsy, created a space and services for other families like hers in Kumasi, Ghana.

— She’s getting an award for being “strong, compassionate, and inspirational.”

— “A testament to what’s possible when empathy meets action.”

What do these two women have in common?

They both HAD to be strong, to work exponentially harder than the norm BECAUSE society didn’t support them.

In Martha’s case, she broke out of isolation as a single mom raising her child in a society that offered her no support.

Angela was simply a Black woman in the USA doing her job.

What many of us don’t see behind the veil of strength is sheer necessity.

Untitled piece by unknown author

Grief is proof…

That you can feel your own heart breaking.

Grief is terrifying…

Because it’s impossible to fix the cause of all this pain.

Grief is lonely…

Even in a crowd of people. Because the only one you want to talk to is the one you can’t reach.

Grief is quiet…

When you try to connect with the one who is gone.. and your questions are met with silence.

Grief is exhausting…

Constantly fighting against the current of reality and just wanting to wake up from this nightmare.

Grief is heavy…

Trudging along in these new unrecognizable days in a world now unfamiliar to you.

Grief is a measure…

Of the emptiness…

Of the pain…

Of the love you are still carrying for them.

And will forever.

—Author unknown

#BoldBecoming
#MastersOfChange
#GriefAndLoss

One of the skills a parent with a child with special needs perfects is advocacy.

Just because laws, regulations, services, and programs exist doesn’t mean treatment and services are handed over on a silver platter.

Reality can be the opposite.

You often fight tooth and nail to get what your child needs.

Medical and educational service delivery becomes and ongoing part of life.

Even when you lose a percentage of these battles you never give up. After all, you’re really the only one going to bat for your child.

• But when it comes to your own needs, you tend to give yourself the short end of the stick.

You often don’t get enough rest or support with daily responsibilities of parenting and running a household.

This comment Shilpi gave on another of my posts says it all:

— “We are allowed to take up space in our own lives, even in hard seasons.”

It was in response to a story of how my mom committed to reading half an hour a day, regardless of what happened to us kids.

The thin...

One of the most important things I teach parents with a child with a catastrophic medical diagnosis is to treat reality as reality.

What does that mean?

When things aren’t the way we want them to be, sometimes we try to twist reality.

We may:

— Pretend what is ISN’T really as it is.

— Get on a hamster wheel coming up with reasons it SHOULDN’T be as it is.

— DENY and ignore reality.

These are just some of the ways we unnecessarily deplete precious time and energy.

They’re coping mechanisms to deal with reality when there’s just too much pain and uncertainty.

And there are better ways.

Here are three ways to cope more effectively that help you face reality head on:

1. Lower expectations

2. Measure productivity differently

3. Take time to grieve.

Life isn’t now, and may never be, as it was before.

With a serious medical condition the individual’s current lifestyle changes. Their life trajectory changes.

The trick here is to lower expectations to match reality WHILE keeping...

I read a Facebook post where a person talked about not letting her disease define her.

It reminded me of how far I’ve come.

My health challenges, that started when I was 21, used to take center stage. They definitely defined me.

I haven’t overcome my health challenges.

I still adapt every minute of every day because of them but they no longer take up center stage.

These were my remarks to the post :

• “It’s been so long since I looked at my medical fragilities straight in the face.
• I’d forgotten how I spent years allowing them to define my life, until at some point I stopped letting them define my life.
• I took over how I defined my life and it’s a great freedom when we do this.
• Thanks for reminding me of this wisdom and strength I had.”

For parents with a child with a catastrophic medical diagnosis it may feel all but impossible not to define yourself around your caretaker role. Around your circumstances.

I’m here to tell you it’s possible to put yourself back in the pictu...

I wonder if the way we train students to learn is shortsighted?

Does it become an unhelpful, ingrained way of living?

In school, we’re rewarded for upholding expectations by following the syllabus and striving for a great final grade.

• But how is outlining everything in advance leaving room for organic growth, curiosity, and innovation?

I wonder if this kind of schooling later contributes to so many people’s reluctance to go off course?

Explore?

Take risks?

Become someone unimaginable?

Does it put us in a straight jacket?

I’m pretty sure we miss out on SO much because of these kinds of predetermined outcomes.

There are different ways to teach and learn.

Ways that encourage curiosity, exploration, and walking blindfolded into the wilderness, aspiring to discover what’s there and be changed because of it.

• When we prepackage value based on already discovered outcomes we miss a freedom that leads to amazing insights and experiences.

There was once a wonderful humanitari...

Wherever I’m heading – I don’t want to be there.

Today I was driving on the first ugly road since moving to Portland a month ago.

It was a bunch of industrial buildings, few trees, and hideous road repair for miles on end.

Driving back from my destination I couldn’t take it anymore. Traffic light after traffic light jammed with miles of traffic.

I took a right turn.

I didn’t check my GPS I just went off course because where I was heading wasn't my final destination anyway.

Sometimes in life, we need to go off course even if we don’t have a map.

• As long as we know we no longer want to be going in the direction we’re heading, it’s time to change course.

First make the decision.

Then figure out how you’re going to get to where you’re going next.

Believe it or not, we CAN take a few turns without instructions.

We can make decisions without consulting ChatGPT. Or Yelp. Or … anything.

Decide first then figure it out.

If you allow uncertainty to be okay, you’ll be amazed at w...

Lots of people say they’re stuck because they lack ideas.

Others say it’s because they can’t choose among their thousand ideas.

They say they’re stuck because they don’t know which to pick.

… “What if I pick the wrong one?”…

… “What if I waste my money, time, social capital, etc.?”

… “What if I’m wrong?”

But what they’re silently saying:

— “I’m scared to vote on myself.”

— “My desires don’t count enough to bet on.”

So they never make a decision and get in motion.

• Fear, indecision, and feeling undeserving stops them in their tracks.

Potential stays out of reach.

More happiness stays out of reach.

Days, weeks, years disappear into lives of discontent.

Turn lives stagnant.

Hiding behind the thousand options… they let those keep them stuck.

They let insecurities and lack of self-worth keep them stuck.

What if the thing keeping you on this side of change is lacking the courage to choose one option and move forward, regardless of outcome?

And what if the key to having ...

Are you caught in a vortex of details that never form a useful whole?

Endlessly spinning around in your head?

Trusting in your ability to figure things out is a skill you can create by taking action before you feel ready.

Before details of your aspiration are worked into a coherent, useful whole.

What’s that look like?

How do I get out of a vortex of beautiful ideas?

By:

— Having the willingness to do it messy.

— Showing up knowing you’re good not great. Knowing good’s good enough.

— Knowing you don’t have to have “arrived,” reached guruhood, become The expert to lead others. If you’re just a few steps ahead you can start helping others. And this isn’t fraud!

— You don’t have to have clarity before taking action. Taking action creates clarity needed to get out of the vortex.

— You don’t have to have excellence before being effective. Taking action leads to growth towards excellence.

— Not trying to serve everyone. Not worrying about those you’re NOT serving. Focus on creati...