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Special Needs

The Space Between Life and Death

Recently Shelly was published on The Mighty.

What Life in the Pediatric ICU is Teaching Me

In this place I have no control. For someone who is a control freak, that can be a hard blow. Our complex kids wouldn't get through their day without us maintaining a high level of control. Yet, when we walk into these doors it all changes.  Sometimes disabilities on the inside feel heavier

than the weight of any wheelchair. T

When "Yes" Just Feels Too Hard

The days turned into weeks ... then into months. It felt like we were

getting nowhere. Sometimes disabilities on the inside feel heavier

than the weight of any wheelchair. The teeth grinding, sleepless

nights and what felt like constant screaming had taken their toll.

On all of us. What if we hadn't heard God right? The doubts from the

enemy had indeed taken root no matter how hard we'd fought them.

Even a seasoned adoptive family can find themselves utterly lost

on the journey. 

Some days I was angry at the broken system she'd been caught up in.

Other days I was angry at myself for letting her down once again.

Holding someone else's hand as they stumble along somehow felt

much easier than getting all banged up & bruised myself. How would

we ever find the light on what felt like such a dark and repetitive path? 

It's important to remember Who led you to where you are. The tricky part is ... you have to choose to keep following Him to ever get to a better place. The only way through the wilderness is to lean in closely to your leader and follow no matter how much of you it requires you to leave behind. Many days it felt like we were making one step forward and three steps back. How would we ever get anywhere? I had so much to learn.

The reality is - God doesn't just accept part of me. He doesn't require me to leave my broken or traumatized parts at the door. He welcomes ALL of me. He speaks LIFE over me. His "yes" is wider and deeper than the biggest ocean. And while mine would be imperfect, and it would many days still feel too hard ... my "yes" needed to reflect His. 

Little by little we are finding our way. Together. One thing is for sure, I'll reach the other side changed for the good. 

The Making of a Special Needs Mom

Some women become special needs moms in the delivery room. Others fly across

oceans. And some, like me, meet a caseworker along the side of the road.

All come with their own struggles and obstacles, grief and joy.

 

Here's a bit of our story . . . 

You often hear people say it takes a "special" kind of mom for this road. Others say

that God gives special needs kids to special parents. Both make me cringe. I can't

speak for all moms. But I can share my heart. I'll be the first to tell you there

was nothing "special" about me. Instead there were so many layers of

SELFISHNESS revealed in me that for a long time I walked around feeling

ashamed. The beautiful thing is that none of that took God by surprise. He met

me in that place and lavished His abundant grace on me and helped me meet Him

there where He gently revealed to me His plan. 

I remember very vividly going swimming with friends with our newest little treasure.

Back then we could pretty much just take her anywhere with us. If where we were going wasn't accessible, it was ok - I'd just throw her up over my shoulder and away we'd go. These two friends saw something I couldn't yet see. They saw a mom called by God into a new path. I was too scared to embrace "forever" so I focused on "today" and that was making a difference for this precious little girl entrusted to us in any way we could. "Forever" would mean letting go of all our plans. It would mean no empty-nesting, getting a wheelchair accessible vehicle, and major home renovations. It would mean my life as I knew it would be over. 

Our early months together were filled with much pain and suffering for our girl, sleepless nights, endless phone calls to providers and all things uncomfortable. Google became my best friend as I'd research diagnosis and medications I couldn't pronounce while trying to comfort a child screaming out in agony much of the time. She'd been let down by nearly every person involved in her life thus far. I wondered if I too would be added to the list

Month after month I had to watch as she was trapped in a very broken foster care system and while I took care of her 24/7 I had very little say in anything. During moments we were tempted to quit, we had to come face-to-face with the awful realities that way too many children face when they don't have a family to advocate for them. 

It wasn't pretty - the things I was discovering about myself. We had to wrestle with what felt like a million questions ... but we kept coming back to this one: Do we value life? All life? I found that it's easier to sit in our comfy church pews and say we are "pro-life" than it is to sit with God in the dark as He reveals our messed-up selves. Yet He meets us with no condemnation and He helps us to gain clearer vision about what really matters in this life. And as He tenderly showed us more of His heart ... the reality became so very real ... she was our daughter. Not a daughter that was born of our flesh, but a daughter that would be grafted into our family none-the-less. 

There's a place where surrender and sacred meet and no doubt we were entering that new place. A place where we would learn that worship sometimes comes on bended knee as you administer medications, change diapers and stretch out stiff muscles. And ALWAYS, He is there. 

Without a word, our daughter has changed our entire lives. She daily lives out God's unique purpose for her life. She has taught us what love and living really mean. We simply cannot imagine our lives without her now. I'm so thankful for how God  transformed our hearts to let go of our own plans and embrace His. We often said that she was our "caboose" of the family. Little did we know she would be a "trailblazer" for much more to come. But that's a story for another day. I almost missed out on the most amazing blessing of being her mom.