Every step of the way

It was like that reminder, the one that you stumble upon when you weren't even looking for it.

My friends and I (to say that, it sounds so simple)....

Well, my friends and I

the friends that I never knew that I'd have

the friends from far-flung places who would have never crossed my path before,

the friends who share "common things" with me, but not really good common things...

Those common things are

disease and doctors,

needles and nurses,

sadness and sorrow,

but which common things are also

joy in the simple,

laughter in the pain,

and love for the children.

This reminder, on the steps of a church, at the end of our day's folly, were so sweet and enduring. HE is with us ... every step of the way. Sometimes it is hard to see, to know, to remember, but He is there.

Why? Why my child?

Why?

That is a word that is heard often in the world of rare disease. It's a word that is often heard in life.

Why did this happen to my child? Why him? Why our family? Why would a loving God allow something this terrible?

God spoke to me through a Nigerian man. A man of faith who has partnered with our church in his ministry for some time. His lessons speak of real persecution, as often happens in his country unfortunately.

Suicide bombers driving onto church compounds. Taking two hours to get to church on a drive that should take 15 minutes because you have to go through military checkpoints that are searching for weapons and bombs. Walking through metal detectors to walk into services. It is that situation that I thought of when I recent wrote about the idea of being an American martyr.

He spoke recently and as he stepped up to speak, I eagerly anticipated his insight, his challenge to our comfortable lives.

And so he began with Ephesians 6:19, "Pray also for me, that whenever I speak, words may be given me so that I will fearlessly make known the mystery of the gospel."

Although I had just written these same words last month right here on this blog, his reference point was much different than mine. For him, fearlessly meant without fear of death. For those of us living in relative religious freedom, it is simply without fear of ridicule. I am definitely not in his league. But it did remind me that God can use all of us in our own mission field.

Before coming to church that morning, I had read the devotional from the Baptist Bible Hour app on my phone. It just happened to be about Comfort and spoke of 2 Corinthians 1:4:

Who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

It reminded me of how we are used by God in those places that sometimes hurt our heart the most, but in sharing that pain and in comforting others, it both can help others and in some ways, heal our own wounds.

So I'm sure you now know the passage from which he taught that morning? That very one. Specifically, he spoke about the reasons the Bible gives for suffering from 2 Corinthians 1:4-11.

1. That we may be prepared to comfort others as God has comforted us.
2. That we may learn not to trust in ourselves, but be dependent on God to sustain us.
3. That we may learn to give thanks in everything.

The why? First, God's ways are so much higher than mine that I don't pretend to fully understand. But second, there are amazing reasons why - so that we can comfort, depend on God, and give thanks. It may be difficult, it may be frustrating, it may be incredibly and excruciately heartbreaking, but God has not left us without understanding.

I can truly say that those are lessons God has been trying to teach me my entire life and I still don't have them down. When things get easy enough, it is just as easy to slip back into depending on our own strength, smarts, funds, and planning.

I can't say that any of us would ask for more suffering in order to learn those lessons better, but I simply pray that I can learn them.

Making it to the Lost & Found

What item of yours would make you almost pass out of you lost it? Or what about if you left it in the waiting room of a hospital and went home? Or if you left it sitting on the floor of a building lobby, next to a display cabinet, and spent the next hour having lunch? Or I'd you left it next to the claw game in the lobby of a Red Robin restaurant and then went home and took a walk before you realized it was missing?

Your iPad? What about your purse? Your wallet?

This describes my last month.

I left Case's iPad in the waiting room of pre-care at UNC Memorial Hospital. I left my purse in the lobby, sitting nicely next to the dollhouse display. I left my wallet sitting next to the games after we ate at Red Robin and we took pictures with the Statue of Liberty display.

Three different weeks. Three different places. Three different items.

And you know where they all ended up, completely and utterly safe and sound?

Can you find my brown wallet behind them?

The Lost & Found. 

I can't explain the gratefulness I feel that God would protect my belongings, things that mean nothing in the end, but which are so incredibly helpful to the current crazy life we are living.

How often does that happen? Getting back three very valuable things left out in the open, subject to anyone's money-desiring whim? Amazing.

It gives me an analogy to our lives.

We live as lost human beings. Lost of a final purpose to our lives. Lost of an understanding of who made us and why. Lost of the knowledge of what happens when we die.

But the prayers of others, the finders, and the searching of our hearts bring us to the Lost & Found. Only there can our owner, God, claim us. He cannot bring us back to Himself if we, of our free will, do not want to be found. If we hide in our secret place or get taken up in the whims of another philosophy, we will live out our days without fulfilling our ultimate purpose, in the care and embrace of our true owner.

So if we make it to the Lost & Found, there is no chance we will just sit there. Our owner is always looking for us, to claim us back to Him.

I've never been a great writer

I've never been a great writer, a creative writer at least. Oh, I liked legal writing. It was structured and formulaic. But the writing I've been doing this past year is anything but. It is raw. It is painful at times.

When Case was diagnosed, and then when he was to enter the clinical trial, I felt like God set tasks before me of creating Case's blog and writing posts that I was wholly unqualified to do. But God was certainly qualified when I called on Him. "When I called, you answered me; you greatly emboldened me." Psalm 138:3.

Just Friday, the painful side of writing became clearly evident. I wrote about a video of a family in the year after the loss of their son to Hunter Syndrome.

But did I really write it?

I think the answer is clearly no. And here's why.

About a month ago, a friend told me about a video, a powerful video, of a family who had lost their son. I asked her how to find it, but she said it wasn't easy to find on YouTube since it wasn't tagged with Hunter Syndrome or Mucpolysaccharidosis. I let it go.

Then about two weeks ago, a did a random search of "Hunter Syndrome" to see what would come up. I scrolled through a few pages and stumbled upon the blog of a mom who talked about meeting a Hunter Syndrome mom at the park. She embedded the very video my friend mentioned.

I watched it.

I felt compelled to write and the words just poured out.

I knew that I needed to watch the video again to finish writing the post, but I just couldn't. I could feel the powerful emotions inside about the potential loss of my son and I just had to set it aside.

It sat there for over a week but I knew I wanted to finish it before MPS Awareness Day (May 15th) so I thought it would be good if I finished it by Friday so it would be there over the weekend before.

That was the extent of my consideration on the timing.

Originally, I had titled it "Anticipation ... and kites".

I needed a picture of kites so I picked one that had two, including a pirate kite like the one in the video.

Oh, I am so feeble minded.

Here is what God did with that feeble post.

He knew that Sunday, today, was Mother's Day.  

He knew that mothers who had lost a child might need that gentle reminder that they and their child are remembered and loved by so many. He knew Brigham, the wonderful boy from the video, had passed on May 15th in 2009. May 15th.

I never picked up on the timing of those events the entire time until after I posted. Yes, I can be that thick.

He knew that the picture of the two kites showed the intersection, the battle, the struggle between life and death.

I knew that the title just wasn't right, but I had titled it at the very beginning and you usually go with your gut. But God knew it wasn't about the kites.

It was about the flying.

God is the writer. I am just a vessel.

Paul said it best, and I certainly don't pretend to be on a level with him, but I would make the same request: "Pray also for me, that whenever I speak, words may be given me so that I will fearlessly make known the mystery of the gospel." Ephesians 6:19. Well said Paul. I think we may have had the same writer.

Raise your hand if you want to be an American martyr?

I was watching a TV show the other night where a mom had been kidnapped. The kidnappers wanted information from her and they were torturing her to get it.

It struck in my mind the analogy to Christians who are tortured for their faith either in the past, like in the Bible, or presently in some countries. The torturers generally want them to renounce their faith, tell where other Christians are, etc.

And it made me think, what does it take to withstand that? It seemed to simply be this.

Loving God more than we love our lives.

Because if you love God truly and deeply, then you trust that what He said is true. That when you die, you will go to Heaven. That we are to proclaim Him and Jesus to the highest heights and farthest reaches of the world. So, obviously, proclaiming Him would not include giving in to torturers. And if you didn't give in, you fulfill God's calling and you go to Heaven.

But what about the circumstance where you want to live. Maybe you have children, like the woman in the TV show who said she was not ready to move on as her torturer discussed different religions and their take on an afterlife.

Of course there are many, many things about this world that we love, not the least of which is our children.

But it becomes about what you love more.

Would there be so many Christians in the United States if we were at risk of being shot every time we walked or drove to our church? If local gangs raped us women and took our children because of our faith, would we use the term Christian so loosely?

Or would we love our life more?

American Christianity looks a little different than that. It is unlikely that we'll ever be faced with that life and death decision of choosing God or something else. But what we love more may come out in many of the smaller choices that we make every...single...day....

     What movies do we see?
     What type of language comes out of our mouths?
     How do we spend our time?
     Is our focus on how to do what we want or how to fulfill what God wants?
     Are we fearful of death?

Do we love our life more than we love our God and His promises?

Who made you?

Sometimes it is difficult to know exactly what Case understands and what he doesn't. But tonight, I wanted to catch his full eyes and see if he could really intake and comprehend that I love him and that God loves him. And then, I said "Case, who made you?"

He smiled and clapped and yelled, "GOD made me!" and started singing The B.I.B.L.E. at the top of his lungs.

I think he's getting it.  :-)