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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Confidently Waiting on God

Each new year turns our thoughts to the new things in our lives. We hope for change in our habits, bodies, jobs, homes and more. I am no different. I see change coming on our horizon. But the difference this time is I don’t know what that change is going to look like. I’m waiting on God.

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Our Evan is reaching that age when all young men look to getting a job. He needs a job. He even wants a job. (Well, he would be happy for a few days sitting around playing MarioKart and watching hours of StarWars. Me, too.) Trouble is, we can’t find a job that suits him. Sure, many people are faced with this same struggle of finding the right job. Sometimes we are forced to pick the tolerable job until that dream job comes along, right? In Evan’s situation we can’t find any job. Evan is ready to feel useful; to be needed and put his skills to use. (If you are wondering what Evan’s skills are, super smiling store greeter is his niche’.) Finding jobs for those with special needs are few and far between. So we are waiting on God.

I’m praying for big things this time around. Have you seen some of the fun places out there for people with disabilities? There are changes coming. Attitudes are shifting. Here are a couple of places I love: Sammy’s Soap is a favorite in my state and this coffee shop video has been making the internet rounds. What are some of your favorite places? Are you volunteering? I’d love to hear what you are doing and how you are getting job creative with your loved one.

That wise philosopher, Tom Petty, said the waiting is the hardest part. He was right. I don’t do waiting very well. I want to know God’s plan and I want to know it now. Trusting in the unknown isn’t my thing. You’d think I’d know by now this isn’t how God works. God comes through in the clutch, when there isn’t any doubt it is only God’s doing. I’ve seen the trends in the past. I wait, there is no other possible way, then and only then, God comes through. This is how God works in the waiting.

Trusting God in the waiting, it is not my forte’. God knows this. I wonder if this is why this lesson comes to me again and again. It is something I need to learn. This time around I’m trusting a little more than the last. I don’t see any jobs on the horizon for Evan. Yet. But I have seen God move in prayer. I have seen God do things that could have only been done through him. So this time? I am confidently waiting on God.

Jeremiah 17:7-8 “But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”

 

My Year in Review: 2016

bossfight-free-stock-photos-sparkler-fire-sparksIt seems like all the cool bloggers are doing it – a year in review. So I thought I would jump on that bandwagon and give you mine. (Because we bloggers really hope this is the time someone reads our stuff.) Don’t worry, I’m not much on talking about all that has been. But I thought you’d like to see the short version of my most popular posts in 2016.

Should I count down? I’ve never done this before. I’ll count down.

#5: Finding Joy in the Mundane. You would think since our life is kindof unique it would be exciting and always new. Well, no. Unless you count running to see who’s gagging in the middle of the night or the never-ending prayer, “Please God, don’t let this be a hospital visit.” That’s the kind of excitement we live with. Otherwise, we chase chickens.

#4: I Need A Nap. This wasn’t specifically about special needs, but more my rant on what a stay at home mom truly does at home. And what we do before 7:00am. Spoiler: In our house, it usually involves grossness. But, I wouldn’t have it any other way. Home is where my heart is.

#3:  They Have No Idea. An oldie, but a goodie. Kindof. The Target Incident. It was the day when we decided to take a break from Target. They didn’t send me a thank you note, but I’m pretty sure they didn’t miss us.

#2:  I’m ‘Just’ A Special Needs Mom. More on being a stay at home mom. Sometimes (a lot of times) I want more than this life I live. Rereading my own post reminds me of all God has given me right here, right now.

#1:  One of the Hard Days. (This was the most read, most popular post of 2016! Congratulations!)  Hard Days. We all have them. Sometimes the special needs hard days are the rest of the world’s great days. But, I know the source of my joy is in Christ. And that’s where I go on my hard days.

And one more for good luck – or just because it was one of my favorites to write … Thankful from the Disability Trenches. I am thankful for this life we live. Evan has taught me so much through disability. I didn’t know what I didn’t know until Evan. It’s difficult to be thankful for someone’s hardship. But it is what it is and I am just starting to see how God is using this life. I can’t wait to look at 2017 and see the way God has moved through it.