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.  :-)

The blessings of late nights

I had planned a thoughtful post, filled with the revelations I've been seeing lately, but to be honest, I am tired. I sit here after midnight, which is not unusual, looking at piles of paper for IEP meetings, taxes, e-mails and calls to be returned, paperwork for doctors to sign, and Case's infusion and neurosurgery check-up staring me in the face in the morning.

I am weary. And then I'm feeling guilty that I'm weary. We had a wonderful day today. There are those much worse off than me. There are those I know who have lost their children recently. There are those I know without jobs. Who I am to complain?

Complain, I should not. But, still tired I feel. I am wholly insufficient for this work. But I often still try to do it on my own. Why do I do that?

"'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me."

2 Cor. 12:9.

God is sufficient. And frankly, when I think about it, if I went back to a life where I could delude myself into believing that I was strong enough, organized enough, smart enough, and energetic enough to get it all done, would I continue to realize how much I needed the Lord and his strength and grace every day?

Probably not.

So God, thank you, for all these tasks. Thank you for the late nights. Thank you for continuing to sustain me throughout the next days. May I do it all for your glory.

The fabric of our lives ... is not cotton

I had decided that I had enough friends. We were preparing to move to a small town in Ohio, for only a year mind you, and I was content that I didn't need to make any new friends. I had great friends from college and from growing up and I was content.

But I guess I hadn't planned that I would meet one of the most dear families I know, and they just happened to live on the other side of our duplex. So we spent the next year laughing, playing cards, loving on their baby and preparing for the new daughter to arrive. At the end of the year, and before the birth of their baby girl, we moved away as planned. That was 13 years ago. We are still quite close.

So then we moved to Nashville. I had just added a wonderful friend, I had wonderful new friends that I was moving nearer to and would get to spend more time with. Again, I was content.

When Case was diagnosed with MPS in 2009, I didn't make the same mistake. I had wonderful friends. But this was quite a difficult thing to understand, and sometimes only those living it can relate.

So began my journey of having "MPS friends."

But MPS friends soon evolved into friends. Period.

And I reflect on this only because recently I've gotten to spend more time with some wonderful ladies in our town. We've crossed paths only because we live in Spring Hill, have children, and like to get great deals by buying and selling online with other families in town.

I've never been an "online talker" but we spent about four hours with laugh out loud, gut-busting conversations the other night while waiting on and enduring a thunderstorm and tornado warnings. Some were in their "safe place" and some of us chose to watch the storm.

This is my fabric. It is woven with friends who all crossed each others' paths for different reasons. Some are on the blue path, some the red, some the most colorful path you've seen, and some threads are tattered and frayed.

But they have created a tapestry, a fabric in my life that I cling to and cherish, for without them, my life would be a bland blanket of only the colors I had chosen, a few black, tan, red, and not much more.

Rejoice with those who rejoice; and mourn with those who mourn.

Romans 12:15. I am blessed enough to have friends who do just that.

I am also studying Job as of late, and while one can question the wisdom of Job's friends later on, one cannot question their love for and dedication to Job:

Then they sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was.

Job 2:13. What a blessing to have friends who would sympathize with us so greatly!

So when you are weaving your life, weave purposefully, openly, and lovingly. And leave room for others to step in and weave themselves into your tapestry.

You'll never imagine how beautiful it will become.

Just another lullaby

I don't pretend to be a great writer. I write because it is my journal and my release, and I write publicly because I hope that somehow anything or something I say might resonate with even one single person.

But sometimes I don't really bare it all, those deepest feelings of pain and fear, sometimes I hold those a little tighter.