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.

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.  :-)

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.

Who is that crazy lady?

Someone might see me at times and think, "Just who is that crazy lady?" It might be when I'm singing the Barney song and adding my own little dance or when I'm pulling the imaginary horn in a chair choo-choo on the hospital stage.

I'm the crazy lady who's learning to live it like I mean it.