I Can’t Do This

I can’t do this.” I said it to myself over and over while the shower water rained down over me. “Please God, I just can’t do this.” When I finally shut up long enough to listen to God speak the first thing that came into my head was, But I can.

Months of lack of sleep, zero exercise, and bad hospital food will put a person in this mindset. (Hospitals, you are a hos-pi-tal. Time to step up the healthier food choices that doesn’t cost a fortune for the families who are now living there. I could write a whole piece on what families need while living in the hospital. But, one suggestion: underwear in the gift shop. Don’t ask.) I can usually take the day head on. Like I tell my kids, “You’ve got this.” But lately I feel like saying what one of my guys says, “No! I don’t got this!

I’m not the first person to cry out to God “Lord, save us.” (Matthew 8:23-27), “Heal him, Lord.” (Mark 5:21-43, John 4:43-54), “Take this cup from me.” (Luke 22:42). Sometimes God chooses to stop the storm and to heal the child. And sometimes he takes us through the valley of the shadow of death before we see the beauty on the other side.

I’ve always wished God would tell me his plan. I’d like to know what lies ahead in this life story. But then, if I knew this hard road had been coming, dang, I’m glad I didn’t see it coming. I’m glad God has his plan and he’s got this.

I can’t do this; be a wife, a mom, a nurse and keep my tears behind dry eyes. I had dreams of doing things in the medical field a lifetime ago. That didn’t happen for reasons upon reasons. But here I am, working (and living) in the medical field every day. I didn’t expect my patient would be my own child. Now that those long-lost dreams are alive and well in my everyday life all I can think of every moment is, “Please God, I can’t do this.” But God reminds me, He can.

Song that’s getting me through:

 

 

 

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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.

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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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.