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:

If there’s one thing I’ve learned from Special Needs … Pray

If there’s one thing I’ve learned to do as a special needs mom it’s to pray.  Pray. Before everything else. Pray. When I’m overwhelmed and in the midst of the chaos. Pray. When there’s nothing else. Pray.


With my eldest I can remember two distinct times of prayer when he was a baby. Two times. Two times I cried out to God in need in those early years. I’m sure I prayed, but life was just easier with a typical baby. Or I was clueless. It’s very possible I just had no idea how desperately I needed God’s help with even the easiest of babies. But two times?

This is what the world of disability did to us. It threw us face forward into prayer. My husband and I knew right off we weren’t going anywhere without God in this journey. We hit our knees fast. Pray. I distinctly remember those first prayers. The, “Dear God, No.” The, “Please, Jesus. Just let <fill in the blank>.” To this day I get a knot in my throat, my eyes well up, when I remember those first days and first prayers.

“… the Lord hears when I call to him.” Psalm 4:3

Praying has since become a peace, a calming presence. While we still have our times of desperate prayers, prayer itself is a time that brings Christ closer. A chance for the Holy Spirit to utter words we cannot.

“… the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.” Romans 8:26

Prayer is a constant conversation on many days. We recognize our inadequacy in this special needs walk. We have to release our constant eye on our son and rely on God’s. We pray and trust his protection more now than ever. I look to the Psalms and see this same constant conversation with God. The pleading, the valleys, the need for God’s intervention. But I also see rejoicing …

And we rejoice in prayer now more than ever. In the beginning of this walk we only saw the struggle. Now we thank God often for this path. This road has shown us how to go to God in prayer for not only our child with special needs, but our other children as well.

Christ himself taught us to pray (Matthew 6:9-13). It must be important. It took special needs to show me just how important it really is. Pray. It’s my lifeline. My instant communication with the only one who can truly offer protection, healing and peace in our special needs world. Before, in the midst and when there is nothing else, I pray.

 

Somebody’s Always Watching …

We all know disability draws the attention of others. I get it. I look, too. We often feel like everybody is Evan’s friend. (Mostly, pretty girls. Evan has moves like Jagger. Be jealous.) People we don’t recognize will stop to talk to Evan because they know him from somewhere. Occasionally, they will tell us how they are acquainted with him. But usually, we go without ever discovering how our celebrity son knows these people. This has made us more aware, whether we realize it or not, somebody’s always watching. (Que music: “I always feel like … somebody’s wAtching me.” Did I just give away my age again?)

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From Acts 16:22-24Msg – After Paul and Silas had been beaten, thrown in jail, under heavy guard and clamped in leg irons: “Along about midnight, Paul and Silas were at prayer and singing a robust hymn to God. The other prisoners couldn’t believe their ears.”

Somebody was watching Paul and Silas that night.

After an earthquake, the jailer thought the prisoners had escaped. Because of this, he wanted to kill himself. Paul and Silas showed him they were all accounted for. Not only did this moment bring the jailer to belief in Jesus, but later, his entire family. (There is so much more great detail to this story. Read it all in Acts 16:16-40)

Paul and Silas had reason to complain. They had reason to whine and moan and even run away when given the opportunity. But they stayed. They sang hymns to God. And people were watching.

What if people were watching a different story? What if Paul and Silas were bemoaning their situation that night? From the looks of things they had every right to groan about being beaten up, complain about being thrown in jail, among several other things. Why didn’t they run after the earthquake? I wonder if the jailer would have been as interested in hearing what they had to say about Jesus after listening to them complain? Would the whole jailer’s family be praising Jesus right now if we heard only of Paul and Silas’ struggles?

Does anyone want to hear about what Jesus has done in my life after only complaining about the weight of special needs?

I won’t stop being honest about the challenges of this life. Paul and Silas’ story was honest. They had a rough go, for sure. Acts 16 doesn’t shy away from being truthful about their day. But at the end of that hard day, they sang robust hymns to God. Acts 16 goes on to tell us they encouraged their friends in the faith, as well.

Be honest. Praise God. Encourage others.

My hard days shouldn’t be an excuse to whine and moan, but all the more reason to turn to prayer and singing to God. My hard days should be a conduit for encouraging others, building others up in the faith.

Because you never know who is watching.

Special Needs Humble Pie

I got a big helping of that special needs Humble Pie last week. You may have been there yourself before. Maybe it was the public meltdown stares. Or people wondering with perturbed looks surrounding public restroom issues. Possibly, you’ve been in a special needs situation that has been a bit humbling. They come often. So often, in fact, I am pretty used to them. Special needs is humbling.

But this last week I purposely put myself in the humbling situation. I had to humble myself in order to avoid a more disastrous outcome.

It wasn’t that big of a deal, but it was definitely awkward. Well, I am the Queen of Awkward. But I fought the idea anyway. Inviting strange looks; I wasn’t sure I was up for it this day.

Evan loves bags. All bags, but mostly reusable grocery bags and gift bags. His biggest OCD trigger is probably bags. He will point to every bag hanging on a woman’s arm. He will reach to touch every bag within reach, much to the dismay of most strangers. And he will obsess over one bag even if he already has 22 bags in his hands. Such was the case this day.This particular day Evan wanted a pink bag. A PINK BAG! I had heard his much quieter request for a pink bag the day before. I couldn’t find any pink bags, so I ignored him and the building drama the best I could. Trying to keep the need for a pink bag on the down-low. But what Evan wants, Evan gets. And Evan wanted a PINK BAG!


So bright and early we arrived at the nearby outlet mall where we had been staying on our mini-vacation. We were some of the first shoppers on the property. And I prepared myself to go door to door at every single store and ask the store keepers if they had any PINK BAGS.

“Do nothing out of rivalry or conceit, but in humility consider others as more important than yourselves.” ~ Philippians 2:3

It was weird. It was awkward. How do you tell someone we need one of the bags you put your purchased merchandise in and it needs to be PINK. If it isn’t pink, no thank you, I don’t want it anymore. As soon as Evan would see another color, he would shake his head and say no. Out the door we would go. To the next store.

Humbled.

I asked again and again if they had any pink bags. I could see Evan’s tension rising as we would leave one store and head to the next. I became more and more humbled and resigned with every stop. It became easier to ask. People were kind as they offered a yellow bag or a plain brown bag. Only kindness came from everyone. I think that was just as humbling as the asking: receiving kindness when we really needed it. But the tension in Evan’s mood was just below the surface as he needed the pink bag.

“God goes against the willful proud; God gives grace to the willing humble.” ~ James 4:6

Into Charming Charlie we went. I had never shopped there before. I passed it by the prior day because I didn’t think they had anything I needed. (Boy, was I wrong.) I asked the sweet young girl if she had any pink bags. She pulled out from under the counter the most glorious sight. “You mean like this?” Hallelujah! Yes, just like that lovely, bright pink bag! Evan’s eyes lit up. Relief rushed over me. I said I would buy something to get it. She handed it right over without need for a purchase. She saved our day!

Evan said to me in a hushed voice, “I want another pink bag.”

Humbled. Again.

Why do I fight being humbled? The more I read God’s teachings on being humble you’d think I would welcome it. Nope. But this is exactly what God wants from me. And not the fake kind of humble we all try to pull off when someone gives a compliment. We try to say thank you without appearing pompous. (Why is that so difficult?!) I’m talking about that kind of humble that makes you go ‘whoa.’ There is someone, something, bigger than me here. Maybe it’s another person. Maybe it’s Jesus. Humbled.

Sometimes that special needs Humble Pie isn’t very tasty stuff. I wish I could work out the situation any other way. But almost always when I look back I see how God has changed me or used that time for his glory. And for that I am grateful for when he humbles me through special needs.

Thankful from the Disability Trenches

 Nobody is thankful for the disability trenches. No thank you for doing things way past the expected age range or getting hair pulled out during a meltdown. I don’t see the praises for IEPs that haven’t really changed in years because the level of learning is pretty much the same year after year. And no Hallelujah for when high school is finished for the virtually unemployable.


We only hear the thank you Jesus when there has been a cure. Praises on the church lists show up when situations such as my family’s have been narrowly avoided. Maybe you’ve heard it before: everyone is one Emergency Room visit from becoming our family. It’s a harsh reality. Harsh, but true.

But I’m going to buck the trend.

I’m thankful for disability.

I’m thankful for disability in the trenches. I’m thankful for those not so nice things that haven’t always been easy. I’m thankful for when I’ve had my hair pulled out to the point of tears. I’m thankful for this special needs life.

This life is not all ‘woe is me.’ Sure, we have hard days now and again. This life is not everything I had hoped it would be. This life is better.

Disability in the trenches is better than a life focused only on me. Which is where I would be without it. I have a hard enough time fighting the ‘all about me’ wants with disability in my life. Disability in the trenches keeps my eyes on someone else … and my behind off the couch.

I think it’s high time I start thanking God for the tough stuff along with the saving graces. I often wonder just what he saved me from by giving me this different way of life. Because of our needs I have a close-knit family, a husband who relies on Christ and whom I rely on everyday, and a family that knows the power of Christ. I think that right there is enough to keep me thankful for every one of the trenches disability has brought us. What have you found that you can be thankful for in the trenches?

Job reminds me often to be thankful in the trenches. I have nowhere near figured out thankfulness like he did. I am constantly sinning and blaming someone in this life. But I am still thankful for the example God has given me in his Word to at least try to live by. Here is what Job said after his children were killed by a tornado:

“Job got to his feet, ripped his robe, shaved his head, then fell to the ground and worshipped: ‘Naked I came from my mother’s womb, Naked I will return to the womb of the earth. God gives. God takes. God’s name be ever blessed.’ Not once through all of this did Job sin; not once did he blame God.” ~ Job 1:20-22 Msg

I’ve got some work to do on my thankfulness, for sure. And so did Job. Later in the Chapter he says this … (I love it.):

“I’m speechless, in awe – words fail me. I should never have opened my mouth! I’ve talked too much. Way too much. I’m ready to shut up and listen.” ~Job 40:3-5 Msg

I don’t know why some are healed, some get more and more sick, some find paths of understanding when the same paths don’t work for others. I don’t know. But I am learning to be thankful for this life that I’ve been given. I am learning from Job that God knows so much more than I. There are things that I may never understand in this life. But I trust the One who “created the Earth … decided on its size … while the morning stars sang in chorus and the angels shouted praise.” (Job 38:2-11 Msg) He is the same One holding me. This is what keeps me thankful for disability in the trenches.