Give It Away: Even in Special Needs and Sickness

It was never mine to begin with. This life I live was never all mine. I gave it to Christ a long time ago. I told him to use me, use my kids, my life, use whatever he needed. I’ve prayed prayers asking God to use me in bigger ways than inside the walls of my house. And, remember the song I sang asking for the Holy Spirit to lead me where my trust is without those same borders? Well, here I am. Living a new life, new borders, new people who I would have never encountered in my old way of living. I guess I forgot to add the criteria to my prayers of no sickness, no pain, no hardship. But then, this life was never mine to make demands upon to begin with, was it? Giving God control even in special needs, even in sickness; I didn’t know he was going to ask me to give it all away. (Next time maybe I’ll ask how God can best use me in the shoe department of Nordstrom?)

An old childhood friend visited us at the hospital. Old friends can be the best, can’t they? They know all the stuff. The good, the bad, the ugly. If they still show up when the going gets tough, that’s a friend. But, a friend who shares Jesus with you? Keep those. This friend shared his devotion on St. Macarius the Great of Egypt. I’ve never been familiar with the saints and this story drew me in. The story of Macarius was that he found thieves taking all he had and loading it all on their camel. But, Macarius didn’t do what most of us would do in this situation; fight for our stuff. He did the very opposite. He helped them load all of his possessions on the camel. He even went back in and gave them something they missed. Then pushed the camel away himself. In the end, the camel wouldn’t leave Macarius until all of what was stolen from him was taken off and given back to him. The thieves left empty-handed.

Give it away. I’ve heard that before. But not like this. When the thief comes? Keep on giving?

This disease that’s now in control here; it’s taken my son. This disease has not just taken my boy, but it has taken so much more than we ever expected. It’s stolen our time for anything, our family cohesiveness, church attendance, ability to parent without many opinions. The thing that hurts so much is it has yanked the joy right out from under me. The laughter is gone. Truth is, I just don’t care what else this disease takes anymore. It can have it. Just give me back my boy.

But I’m not sure my current dumping is the way Jesus intended us to give it all away when he was approached by the rich man. His way is something more willing. When the rich man asked what he needed to give up to get into Heaven Jesus said to love your neighbor as yourself and sell everything. Then follow him. Follow Jesus. (Matthew 19:16-26)

Give it away. And somehow I don’t think Jesus was talking about just the stuff. What else have I been holding on to? My way of life? My comfort? My routine? That routine has been King for a long time here. Routine just got dethroned.

There’s another story in Genesis (Gen.22) about a man having to give up his son. It’s a dark story that we parents don’t like to look too long upon. Ask me anything, God. But, please don’t ask me to give up my babies, whatever their age. What I try to see in that story, more than the near death scene, is God providing. God providing a way in the darkness. He asks a father to give it all up, only to show him he had the answer waiting at the end of the story all along.

I guess this disease can have my stuff, my old way of living, all I’ve ever known. Even that blasted routine. You can take it or I may even start helping you load it on your camel, Disease. I’m starting to figure out that God just might have a bigger plan waiting at the end of this road than I can see from my point of view.

Song that’s getting me through:

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.

My Struggle with Grace is Real

My struggle with grace is real. Well, my struggle with giving grace is real. I have no problem accepting grace. I want grace all the day long. But offering it to others? Well, that’s where my struggle begins.

I posted a picture of Evan and me in the doctor’s office waiting room. A woman was staring at us. Staring, glaring, all the -ings. And once she knew I knew she was staring, she did not care anymore about appearances and kept on staring without trying to hide it. This wasn’t that nice stare when people smile at you while staring. That I tolerate. (Smiling is my favorite! #Elf) She was just gawking. I was so ready to give her the bug eyes right back. Here is where my lack of grace skills comes in. So my go-to is to post a picture of Evan and me and our intolerance, right? Why would I be the first to smile and offer grace? Nope. That’s not how I roll, remember? Offering grace just isn’t my thing. But it sure is what I expected of her from the very start.

My struggle with grace is real. I want all the grace all the time. I want all the accommodations that come with disability. I want all the handicap parking spaces. I want all the back door entrances, the front row seats, and free passes. I want your eyes on me when it’s convenient for me, but please avert your eyes when it isn’t. (And you should obviously know the difference between the two.) I want you to cut me some slack in this special needs world. But you? You want me to give you some grace? Whoa. Let’s not get to loosey-goosey with this grace thing.

A friend commented on that picture and said the lady was probably staring because we have joy. Evan has joy. It’s true. We’ve figured out how to have joy in this special needs walk. (It’s hard not to with Evan, he’s hilarious.) We just came out of an illness; a hospital stay. We were seeing the doctor for a follow-up from that time. Evan was still dealing with the after-effects of the illness. His laughter was making him cough. (Probably why she was staring.) But even though there was illness, there was joy. We know the source of our joy is deeper than good health or a good doctor checkup. The source of our joy is the same source of that ever-flowing grace.

God gives us grace through Jesus. He G-I-V-E-S it to us. So why do I have such a difficult time giving it out? I’m stingy with grace. I want it, but I don’t want to hand it out freely. If God keeps on giving it to me it isn’t going to run out anytime soon. I may as well pass it on to others.

I’m sorry, lady in the doctor’s office. My struggle with grace is real. And I don’t mean that in a trendy catchphrase way. It is real. It is something I need work on. Grace is a free gift from God. It should be my free gift to others, too.

Ephesians 2:8 “For it is by grace you have been saved, through faith – and this is not from yourselves, it is the gift of God …”

Unspoken: Call It Grace is a wonderful description of the miracle of Grace.