Caring for the Caregivers

Most days, caregiving moms don’t get to fall apart. We don’t get to rest fully. We carry medical appointments, therapies, behaviors, fears about the future, and the quiet ache of loving a child whose needs never clock out. Strength isn’t something we choose, it’s something we live inside of every day. 

So when I stumbled upon an organization that exists for one simple, radical purpose, to care for us, I didn’t realize just how deeply my soul needed it.

A sweet friend recently told me about Breathe In Ministries. And now, I want to tell you.

Started by 2 moms who have children with extra needs, they create sacred spaces for moms with caregiving challenges to experience REST – Replenishment, Encouragement, Silence, and Tranquility! Who doesn’t need that?

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What 24 Years of Being Josiah’s Mom Has Taught Me

We’ve walked a long, windy, bumpy road with Josiah since 2002.  I vividly remember not being alarmed when we learned he would have Down syndrome.  I truly felt Josiah would just have a few extra hurdles to jump over.  With four typically developing siblings as built-in role models how hard could it be?

I love a challenge.

But, had I known how overwhelming, turbulent and exhausting life would become I don’t think I would have been so optimistic.

Here are some key takeaways that may help others just beginning this journey:

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Dancing in the Rain

One of my all time favorite quotes, the one that helped me through countless days like the one I’m about to describe for you sits in a prominent place in our home.  I put it there for a reason.  At least 500 times a day I walk past it and have the constant reminder that I am not in control over much of what happens in this life.  However, I am able to choose how I respond. And that is only by the grace of God.  I most certainly am not able to do any of it in my own power!

Around here we have lots of stormy weather.  I think it all started when Josiah was just about 5 years old.  Seemingly out of the blue, our sweet little guy decided to crank up the noise.  He went from cuddly, loving and curious to becoming explosive almost overnight. Looking back though, those were just heavy rain showers.  As he’s gotten older we’ve endured gale force winds and frequent flash flooding much more often than I’d care to admit.

There were no warnings, no Space City Weather guys preparing us for the impending doom.  It was just us, fumbling our way through with a house full of kids, trying to figure it all out.  Most of the time it was not pretty. Read more

One Year Later

September 2017 our nightmare began.  

Without warning, Josiah violently pummeled his head frequently and screamed loudly, suffering in some sort of horrendous pain.

We had no idea what was wrong.  We had no way to fix it.  We could only suffer alongside our son as he tortured himself, praying desperately for answers, doing our best to block the blows.

Josiah was in the hospital 3 times in 4 weeks.

He is a teenage boy with Autism we were told. There is not much anyone can do. 

The specialists suggested he wear a helmet.

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Does Anybody Have a Map?

Does anybody have a map?
Anybody maybe happen to know how the hell to do this?
I don’t know if you can tell
But this is me just pretending to know

So where’s the map?
I need a clue
‘Cause the scary truth is
I’m flying blind
And I’m making this up as I go

Those words are taken directly from the song  Anybody Have A Map? – Lyrics | Dear Evan Hansen I heard them for the first time a couple of weeks ago and felt as if they had been written just for me.

I would give 10 years of my life for a map.

Just someone, somewhere a little further up the road who has been where we are right now waving enthusiastically, assuring me we are on the right path.

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