It’s Okay to be Broken By Special Needs

“Never let them see you cry.”

This has pretty much been my life motto since as long as I can remember. When I was in my early twenties I was sitting in church with my mom. We were listening to someone give a moving testimony that I can’t remember because I was blocking it from my mind. I couldn’t let it get in. Wouldn’t let its words soak into my soul for fear my tears would let loose. My mom looked at me with her own tears rolling down and whispered, “You must have ice water in your veins.” She couldn’t believe I could sit there and not be moved to tears. But, I refused to let others see me broken.

You see, I’d been hurt not long before that time. Hurt by hard words from someone I held close and gossip from those I didn’t even know well. You understand how that goes. Sticks and stones… Words have the power to run deep no matter who speaks them.

I learned right then and there to lock my tears up behind a wall. Never let them see you cry.

And then, several years later, my amazing bundle of special needs was born into my world. No doubt, it rocked us to the core. But, by this time, I had been working long and hard on keeping those tears locked somewhere deep in my core. I gave all I had to God during that time. Except my tears. This would not break me.

I’ve had two decades of time to build my special needs wall of no tears. It was built on a foundation that started way before special needs came along. I’ll be the first to admit I’ve become somewhat hard-hearted over time.

Until now.

Our son, who has those same specials needs that built my wall decades ago, received yet another diagnosis that will make life even tougher for him. Tougher for all of those who love him.

My hard-hearted wall finally came crashing down.

This past month I have cried more than a lifetime of tears. It’s like a dripping faucet that can’t be fixed. Crashing waves that ebb and flow. As I write this I can’t stop the tears from falling off my cheeks. And you know what? It feels okay to not have that wall anymore.

It’s okay to be broken by special needs.

I wonder if God is saying, “Finally! Finally, Stephanie.” I am broken. And it feels good.

Maybe this is why it feels so good to be broken: Psalm 34:17-18 “The righteous cry out, and the Lord hears them; he delivers them from all their troubles. The Lord is close to the broken-hearted and saves those who are crushed in spirit.”

When I’m broken, the Lord is close.

So being broken every second of every day? The Lord is close. Every second of every day.

I long for that day when there will be no more tears. When God wipes them all away. When there is no more death to worry about, cry about, and no more pain. Oh, how I long for the days to come when these are gone forever.  (Rev.21:4)

I still don’t like crying. I don’t like others to see me in my most vulnerable times. (Yeah, it’s not pretty. I’m an ugly crier. No dainty tissue-tapping here. It’s full-on nasty.) And, I still find such embarrassment in my tears. I hear the voices of others begin to talk. What will they say? But I’m working on hushing those voices in my head and listening for that still, small voice. I’m leaning in to hear when the Lord is close to my broken heart.

(Aaand there it is. I’m crying again.)

Trusting God in the Hard Times

You know the Hillsong United song, Oceans, right? We all know it. We love it. We sing it with gusto. I mean, what’s not to love? It’s anthemic. It’s Hillsong. It’s the beautiful voices (and to be imitated dressers) of Joel Houston and Taya Smith. Let’s look at a few of the words.

“You call me out upon the waters – the great unknown where feet may fail … And I will call upon your name – and keep my eyes above the waves … Your grace abounds in deepest waters … where my feet may fail and fear surrounds me … Spirit lead me where my trust is without borders … take me deeper than my feet could ever wander – and my faith could be made stronger – in the presence of my Savior.” [Songwriters: Joel Houston, Matt Crocker, Salomon Ligthelm © Capitol Christian Music Group]

Beautiful, right? No doubt. I could sing this song all day long. But have you listened to what we are actually singing?! Let me paraphrase. It’s a song about asking God to lead us into the deepest depths of the ocean, where we cannot reach the bottom with our feet. They are dangling out there where the sharks and jellyfish can get them. And, did I mention sucking both air and saltwater while sinking? While all this is going on, the song wants us to keep our eyes above the waves.

What Am I Singing? THIS is the place my trust is made stronger. This is where grace abounds. Out in the deepest water with fear surrounding me is where I have just asked God to lead me? I don’t think I want to sing this song anymore.

We got one of those phone calls this week. The kind of phone call that no one wants to receive. The phone call that made us realize we are being led into deepest waters where our faith will be made stronger.

When you have a child with special needs and the diagnosis just keeps getting harder it is difficult to see God’s purpose. It was mentioned to us to think eternally after this diagnosis. Meaning, think bigger than the here and now. Okay, so my gut reaction was – Heck, No! I don’t really want to think eternally. Because that means I have to think of this life coming to an end someday. I have no desire to let go of my child. But remember, I already sang to God asking him to lead me where my trust is without borders. Well, here we are. I’ve never been in these waters before. I have no choice but to trust His plan and purpose. And I would bet that plan is eternally bigger than this life has to offer. Like it or not.

Trusting God in the hardest times is Hillsong’s Oceans come to life. Here I am in the deepest waters. (I’m in deep, no doubt.) I’m calling on His name (Rom.10:13). I’m resting in His embrace (Psalm 62:5). I’m hoping He helps me walk upon these waters; wherever he calls me. And my faith will be stronger for it (Rom.5:3-4).

 

When You Lose All Control in this Special Needs World, Where Do You Turn?

I am a bit of a control freak. Shhhhh. Don’t tell my family I have admitted to this teensy flaw. Just because I like things to go my way a good deal of the time doesn’t mean I’m controlling. I’m just usually right, right? (This makes sense in my head.) So when it comes to illness in our house, I take control. We DO NOT want sickness in our house. Sickness is bad in anyone’s home, but in a special needs home? It is The Devil. Sickness can bring down the almighty routine faster than any other change. Sickness means medicine changes, food changes, sleep – what is this sleep of which you speak? Sickness can mean doctors or even worse, a midnight run to the hospital. So when I say I am a control freak, with illness, I take the bull by the horns.

So when I was the one who walked right in the front door with the whopper of all illnesses I had nothing left to control. I had taken all the precautions, Lysoled all the door knobs, coughed into all the inner elbows (a.k.a. Chelidon or cubital fossa), sent everyone the CDC flyers on why they should get flu shots (oh yes, I did), I might have even resorted to those new fangled essential oils. But what happens when I get sick, when I bring that devil right into my house? Bye-bye, control.

What do we do when illness comes knocking and we’ve done all we can do? What do we do when a diagnosis even worse than expected comes to call? Sometimes it seems our special needs kids get heaps upon heaps of one more thing. Just when we think they couldn’t possibly have another diagnosis, they do. To whom do we turn when we’ve done all we can do? When you lose all control in your special needs world, where do you turn?

Maybe I never had control to begin with, ya’ think? I like to believe I had total control, but I think we know who controls this outcome. I can spray, diffuse, inoculate  or duck and cover all the day long. But when the day is done, I have to let go and give control over to the only one who ever really had it to begin with. He is my refuge and strength, my armor and protection. He tells me to not dread the disease that stalks in darkness or the disaster that strikes at midday (Psalms 91). If I hold this promise true for me, then I hold even tighter to this truth for my child in his many needs.

How many times have I read the story of Shadrach, Meshach, and Abednego (Daniel 3)? You know the one? Spoiler alert: they are saved from the fiery furnace. But go back to the beginning, where it says, “The God we serve is able to save us…but even if he doesn’t…we will never serve your gods.” They knew God could do it, but still may choose to not do it. Yet, they gave God all the control. They got in that furnace fully knowing God may choose to not save them. (Thanks, MercyMe for the new look on this old story.)

What furnace are you in today? When you finally lose all control in your special needs world, where do you turn? To whom are you giving control?

Me? I give God control … aaaaand then I take it back again. It’s a tug o’ war battle I’m constantly losing. I lost all control this week. God made it pretty clear this special needs walk has nothing to do with how many door knobs I wipe. So, I’m giving control back to Him for a while.

Happy Valentine’s Day to You!

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THIS CONTEST HAS ENDED. 2/13/17

It’s no secret I love Michele Cushatt‘s book, I Am. I had the joy of being on the launch team and I knew I would like the book. But I didn’t know I would love it this much. I have always loved the way Michele writes. She holds nothing back about the tough stuff in life. But, then she always points me right back to the only one who can heal and help us through this world, Christ.

I Am is no different. It has all of the things I love about real life struggles, her struggles and Christ’s healing words. But it is also in super easy to read portions. It can be read as a daily devotion, even.

I know, get to the GIVEAWAY!! Here is what you need to do to enter:

  1. Leave a comment on my blog post  or Key Ministry’s blog (just click on these links and they will take you right to the posts). Any comment will do – something about the book, the blog or what you really think of Valentine’s Day – it doesn’t matter. It is just to get you entered. I’ll be watching and responding to get you recorded in the giveaway. (Sorry, I’m not cool enough for Rafflecopter. Maybe one day. I’m still accepted says this book!)

The giveaway closes at noon on Monday, February 13. So you have all weekend to leave your comment. I can’t wait. GO!

A Seat at the King’s Table

Blindsided. That’s how it felt sitting at the long conference table with everyone seated away from me. I joked unknowingly before the meeting began about feeling ganged up on with me on one side, alone, and all seven other people on the opposite side of the table. I started to wonder when they all chuckled nervously in response. It felt a little like a police interview. “Where were you on the night of …?” They told me I was there for a follow-up to a meeting we just had a month ago. Something about testing my son wasn’t going to need in the future of his program, even though I said several times we had already discussed this and it was in the notes. Oh no, they said, it just needed to be documented formally. No big deal. That’s not how it was beginning to feel all alone on my side of the table. Blindsided is how it was beginning to feel. I was starting to wonder if I even wanted a seat at the table.

 

I didn’t see it coming. While none of it felt right (You know, that sixth sense that this isn’t right?), the odd reason for the meeting, the strangers in attendance; I still didn’t get it. I mean, I’d never been blindsided before. Well, there was that one other time a few of these people were here several years ago … WHAM-O. Those same people who never come to the meetings are suddenly making decisions for the future of my son. Those people who have no idea who he is or what he loves. Or hates. These are the people on his … team? I wanted to ask, “What was your name again?” (I looked it up on page two of the handy notes they had prepared for this meeting that wasn’t any big deal.) While those of us who know him best sat quietly, blindsided. (Don’t worry. I eventually found my voice. Shaky as it was. “Nobody puts Baby in a corner.”) Little did I know, that ‘no big deal’ meeting was to become a two-hour battle to keep my son enrolled in a program in which he had every legal right to remain.

 

People will let us down. This fallen world will always fail us. Always. Michele Cushatt brought my attention to a man by the name of Mephibosheth. You can find him in 2 Samuel 9 in the Old Testament half of the Bible. Michele tells in her book I Am about her desire to be accepted. Many of us have this need, this craving. Mine can be overwhelming. I’ve been seeking worldly acceptance for a long time in most everything I do. But when I read her story and the story of Mephibosheth I read it from disability’s point of view. I read it from my Evan’s point of view. You see, Mephibosheth was a man with a disability. He once had a place of honor, but no longer. He was living far from the king.

“The king said, ‘Is there not still someone in the House of Saul, that I may show the kindness of God to him?’ … ‘There is a son…he is crippled in his feet.'” 2 Samuel 9:3

The king wished to restore his seat at the table, the King’s table, disability or not. Just like Mephibosheth, I long for Evan to be accepted at the table. I needed him to be accepted at this long conference table at which I sat, facing those who just wanted him somewhere else.

“So Mephibosheth … he always ate at the king’s table. Now he was lame in both his feet.” 2 Samuel 9:13

Acceptance at a worldly table may always be an uphill battle for those with disability. The table may be “fickle”. It may be accepting one day and ready for us to leave the table another. But also like Mephibosheth and the King, Evan will always have a seat at the King’s table. The King is waiting for him, for us, at his.

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