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:

 

 

 

“We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites.”
Translation: If you buy from the link it helps me out. Thanks!

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.