A Re-imagined Christmas List

I'm kind of at my wits' end with Christmas lists. Are there things we'd like? Sure. Are there things we need? Not so much. But still we go through the process every year of looking through catalogs, daydreaming, and scrolling to find just those additional things to fill our house to (over)capacity.

So why then do we make Christmas lists? Certainly we are honored by loved ones who choose things that they think we'd like or might need. And sometimes there are things that we wouldn't buy for ourselves but are still nice to receive.

But in light of that, how do I raise children who are not focused on material possessions when each year we get to make a list of what we want and give it to people to buy for us?

I've been challenged to start a new tradition. A new kind of Christmas list.

We plan to sit down with our kids and ask each of them to make a new list, a list of at least three things that they'd like for us to do for someone else, someone who is not part of our family. Something big.

We would do the same and we'd then compile all the lists into a "Family Christmas List," choose one item to do on Christmas Day, and complete the rest of the family list by the next Christmas. Now that's a Christmas list! 

Now of course, upon having this revelation, my first (fully and sinfully human) thought is, "What if my child wants to give a million dollars to a homeless man? I'm going to have to tell him that we don't have a million dollars to give. And maybe the man wouldn't spend it right. And maybe there are others who need it more."

But shouldn't I just be happy that my child would be so generous as to have that intention?

And shouldn't I realize that God could easily provide the means by which to give someone a million dollars? I mean, the recent Powerball was what? 550 million? And that surely wasn't even God....

I write, dear friends, so that this intention will not remain just that, an intention, but instead flourish into an action and then, a tradition.

So who will make a new Christmas list with us? Or who else has a tradition of particular acts of service around Christmas-time?

Who you are

I heard a song recently and one line particularly stuck with me. It said, "sometimes pain's the only way that we can learn."

Maybe that's true. I found my true self on April 6, 2009, lying flat on the floor sobbing for the life of my child.

But what if that hadn't happened? What if Hunter Syndrome were never part of our lives? Would I have continued on in my mediocre, "I'm a nice person and I know that God is there for me" life?

I hope not, but quite possibly.

If you, my dear and few readers, have not had a life-altering, what I call "Come to Jesus" event in your life, I hope it never takes that for you. And if you've had that event and it's not changed you, then I pray it will.

As the song notes, "You can never fall too hard, so fast, so far that you can't get back when you're lost. Where you are is never too late, so bad, so much that you can't change... who you are."

Thankful for that.

I want to be a peach

We were not meant to have a mediocre life.

We were meant to live a radical, blessed, edgy, open, screaming about the love of Jesus life.

I've heard people sometimes being referred to as an onion, and even in the movie The Blind Side, Leigh Anne and Michael are each referred to as onions, where you have to peel them back one layer at a time.

But I don't want to be an onion. I don't want people to only see pieces of me at a time, to not know the real me until layer after layer is revealed.

I want to be a peach.

I want to have just enough skin to hold the bursting flavor inside. And when the skin is open, I want to burst forth with the sweet scent and taste of trueness, compassion, and radical love for Jesus.

I want people to see that underneath that sweet soul is a hard rock, a pit that is not a pit, but instead the unbreakable core of my life that is my Lord and Savior.

I want to be a peach.

I have a confession

I have a confession. I've been advocating and writing about rare disease which makes total sense since Case's condition is, in fact, what they call ultra rare. But lately, I feel like I've been hiding something. Not on purpose, it seemed like it was a temporary thing at first, it was really just nobody's business and in the grand scheme of things, it did not approach any level of importance compared to Case's challenges. But as things progress and it consumes bits and pieces of my life, it has felt like keeping a secret to write and write but never mention it.

I have a rare disease. It will not kill me. It is not anywhere on the plane of the challenges faced by Case and other children with special needs, but it is there. In fact, I did not even know it was considered a rare disease until I delved deeper into advocacy and kept seeing it mentioned.

I have something called CRPS or Chronic Regional Pain Syndrome in my left hand and arm. It was caused by a wrist sprain in July 2010 and it continued to get worse until it was diagnosed later that year. CRPS is a chronic pain condition that can affect any area of the body, but often affects an arm or a leg. Doctors aren't sure what causes it, but they suspect it involves overactivity of the sympathetic nervous system.

For me, it involves numbness, pain, itching, twitching, soreness, dystonia (involuntary movements), extreme sensitivity, coldness at times then swelling and heat at others. Medication helps. Sometimes. Nerve blocks help. Sometimes. But then medications and procedures have their own side effects.

If my hand is in a pocket, underneath my armpit, or wearing a glove, now you know why. If I'm rubbing my hand or arm, now you know it is because it hurts, it itches, or is numb. I have trouble with opening things. I drop things. I compensate in driving, opening doors and other tasks with my knee, foot, or right arm. I had to drop my entire workout regimen two years ago and have yet to return. I have to tell my kids not to grab my hand and often just give in. They are just kids and what do they know of pain?

Case wants to be carried, his chair needs to be carried and as I've said before, there is no "carry fairy" in our life so of course, that is what I do. Typing is the worst, so writing, my joy, is often slow, error ridden, and often has painful repercussions as well. But it will not kill me. So ... what?

Over the last two years, I've had multiple stellate ganglion blocks, doctor appointments, medication changes, and hand therapy visits. I've switched medications because of falling asleep. I've put on significant weight and I have side effects. My left arm does not feel as if it is part of the same body as the rest of me. But I am somewhat at a loss. While I have seen some improvement since I was first diagnosed, it remains a part of my life every single day.

This week felt burdensome, which is why I felt compelled to write, to connect. My pain doctor is now seriously discussing an implanted spinal cord stimulator versus more ganglion blocks or ketamine blocks, but I went ahead and scheduled three more ganglion blocks for now. I don't think I had fully accepted that I may face this the rest of my life. It was a wrist sprain! Two years ago. TWO YEARS ago.

What is most difficult, I think, is the loneliness. I do not look like I'm in pain. I strive to act as normal as possible not only because that's how I choose to live but also because continuing to use my arm and hand normally is what my doctor feels will help prevent it getting worse. But while I look like I'm making lunch, I am continually fighting my brain's signals of both pain and to not use the arm, to roll it up and pretend as if it's not there. I know that sounds strange, but that is how it feels.

Of course, there are definitely good days too. But driving to the clinic alone to have a big needle stuck in my neck while I'm fully awake is ... lonely. We have so many pulls on our life.... I sound as if I want pity. Not pity, just not to feel alone. So I now describe it to you, my friends, so I don't feel so alone. But I need to remind myself that I'm never alone. God foresaw and will use even this.

In the grand scheme of things faced by our family, this is but a speed bump. It just happens to be a long one. 

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

James 1:2-4. I'm sure working on that perseverance thing.

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.