Difficult Christmas

The "firsts" are difficult. The first Thanksgiving, the first Christmas, the first birthday without a loved one is rough. I usually do not like getting all the Christmas decorations out of the attic and putting them up anyway, but I really did not like it this year. So many ornaments were made by or for Macayla. Just trying to decide if we should hang her stocking or not was tough. We did not have to shop for any presents for her. She will not be here in the morning to see (or more recently, hear) the gifts being unwrapped. It stinks.

But we often forget how difficult the very first Christmas was for Mary and Joseph. Mary started her pregnancy out of wedlock, which would have made her a target for ridicule, if not stoning. While pregnant, she had to travel approximately 100 miles on donkey over rough terrain to make it to Bethlehem for the census. Some critics say the Bethlehem story was added by Matthew and Luke to bolster the idea that Jesus fulfilled prophecy. They claim a pregnant woman would not have taken a chance traveling like that as it could be very dangerous. They ignore the fact that staying where she was could prove to be dangerous as people may pelt her with stones for what they perceived as adultery! Childbirth is a hard and dangerous process we take for granted more than they did. There was no NICU or emergency OR to save mom and baby from complications. In fact, Jennifer would not have survived Macayla's delivery 100 years ago. Mary faced these dangers and public humiliation. Had it not been for angelic intervention, Joseph would have abandoned her.

Their journey was full of hardship and potential disaster. What would have been a two hour car ride for us, lasted several days for them, and possibly longer if Joseph had to stop along the way and work to finance their journey. Once they reached Bethlehem, there was not a comfortable hospital suite to deliver Jesus. There was no vacation home or condo in which to stay. No, they had to first stay in the place where animals were kept. Not the warm, country barn type stable we typically picture, but probably a place akin to a dugout basement or cave. They were poor and faced quite a bit of peril that first Christmas. Even after Jesus' birth, the Magi later came and we see that King Herod had plans to kill all the male toddlers to prevent another king from rising up and taking the throne from his heirs.

How often we complain about the little things of Christmas! The crowds, the wrapping, the decorating, the travel, etc. But celebrating Christmas with a gaping hole in your family puts that stuff in perspective. Seeing how the Savior came into the world also puts it in perspective. This was no cute nativity scene, but a harsh and dangerous entry into the world. God became flesh and dwelt among us in poverty, pain and persecution, not a palace. He is not aloof to our situations, but has identified with them fully. He knows what it is like to go through those firsts without a loved one. He even provided the first and only Christmas that led to the first and only Easter. Now we get to celebrate them each year.

Merry Christmas!

Camp New Hope 2010

Last week, we went back to Camp New Hope. This was our forth year going there and the first time we have been in the Fall. It was the first time going without Macayla. It was beautiful and difficult at the same time. The camp has a Garden of Hope, which is under construction, and it has a stone bench in it dedicated to Macayla.

It is hard to know how to feel about some things. Sometimes it is hard to identify the feelings you have. But Macayla loved that mountain and we are so glad she got to be on it so often. As hard as the week was, we found time to laugh, remember and make new memories.

Part of those memories include a family we met there. Sadie and her family spent the week there and we were fortunate to share time with them. Sadie has been diagnosed with a rare genetic disorder called Aicardi-Goutieres Syndrome. It prevented her from developing on many levels but she was very aware of what was happening around her. She loves the sound of the zipper on her feeding pump's backpack. She would laugh so hard she couldn't breathe! She loved spinning in an office chair and riding on the Kubota rough-terrain vehicle. Jennifer and I got to hold her and it was good therapy for us. Sadie blessed us.

Jacob made friends with Sadie's brother, Sam, and they had fun playing games and fishing. Lily met her twin at the camp, a dog named Moe. We kept getting the two of them confused and had to make sure we were bringing home the correct dog!

As for Camp New Hope, they are feeling the economic pinch like many people and need financial support. The cabin needs some renovations to make the bathroom and kitchen accessible for wheelchairs and special-needs equipment. The renovation they have planned will cost around $60,000. The ongoing cost of hosting a family for a week is approximately $600. Donations of any size are tax deductible. What a unique Christmas gift to give! Your donation will contribute to helping over 40 families a year have a unique and amazing experience they could not have otherwise. Check out their site and donations can be done online.

Macayla's Soundtrack

Shortly after Mac went home, I compiled some songs to use in some home videos. These songs were meaningful to us and to Macayla. The CD is in Jennifer's car, which I happen to be driving today. I listened to it.

The "Bare Necessities" from Disney's Jungle Book was on there as was "Hakuna Matata" from The Lion King. Macayla loved those movies and those songs. Even after she was immobile, I would help her dance to these songs by moving her hands to the rhythm (which was not too good considering I have no rhythm!) But she would smile so big. I miss dancing with my girl.

Another song on there is "Held" by Natalie Grant. It is from her 2005 Awaken CD. The lyrics to this song are about situations like ours and what it means for believers. One line always jumps out at me:

If hope is born of suffering;

If this is only the beginning,

Can we not wait for one hour

Watching for our Savior?

It always brings the picture to mind of Jesus in the Garden of Gethsemane asking His disciples to keep watch while He prayed. They kept falling asleep while Jesus agonized over what was coming. He asked them, "So, you men could not keep watch with Me for one hour? Keep watching and praying that you may not enter into temptation; the spirit is willing but the flesh is weak." (Mt. 26:40-41) They kept falling asleep as Jesus grieved over what was to come. The hope of salvation was about to be born in Christ's suffering and they slept. Jesus' prayer was the beginning of His suffering for our sin. It was the beginning of the Easter story that brings eternal life to those who believe and confess Christ as their Lord. But the disciples slept.

Certainly, Macayla's death was the beginning of eternity for her. Our lives on earth are but blips on a screen compared to the eternity we will face. Christ was very clear on this point. We either face an eternity with Him or an eternity separated from Him. His blood spilt on the cross atones for our sins, the sins that separate us from God. The suffering on the cross was a literal Hell on earth, yet so many of us let this reality slip past us as if we are asleep. Jesus' death and resurrection offers forgiveness and restoration, yet we sleep through this truth as well. We do not have to wait until our death bed to experience the eternity we are headed for. With Christ we can get tastes of heaven on earth, a preview of the glory that is to come, yet we sleep through this too. All too often I am so wrapped up in my circumstances that I sleep through the greater reality and truth of Christ.

Macayla's soundtrack reminded me to stay awake and pray. Keep watch for what my Savior is doing in my life and what He is calling me to do. It is bittersweet to listen to her music and remember her smiles and dancing. It is hard to say "Hakuna Matata" or "It Is Well with My Soul." But Macayla and her life had the "Fingerprints of God" all over them as she lived a "Life Less Ordinary." On hard days, I have to remember that God "Led Me" and so "I Will Praise [Him] in this Storm." When my blip of a life is over and enter eternity, Macayla will be there. We will see the abundant life Christ gave us, far beyond just the "Bare Necessities!" We will see that in our worst suffering on earth, we were indeed "Held" by nail-scared hands.

The Continuous Love of God in Pain

You can have a mixture of comfort and fear if you read the eleventh chapter of John's Gospel. It is the story where Mary and Martha's brother, Lazarus, became ill. They sent word to Jesus who was at a distance. This story can stir up fear because upon hearing the news, Jesus did not come to Lazarus. He did not heal him. He purposefully waited for two days after receiving the news before taking action. As a result, Lazarus died from his illness. We don't like a God who would do that. We want a God who will jump into action and save the day!

Upon hearing the report of Lazarus' illness, Jesus responded, "This sickness is not to end in death, but for the glory of God, so that the Son of God may be glorified by it." Yet, as we read on, Lazarus died. Now, for those familiar with the story, we know that Jesus showed up after Lazarus had been buried and Jesus raised him from the dead. That's amazing, of course, but experience tells us that Jesus does not perform this miracle very often. It is even a rare occurrence in the Bible. So, this makes us uneasy about God. He is not a tame God. We cannot compel Him to do things our way and in our time of need, that makes it hard to know from where our comfort will come. Jesus said this illness would be for the glory of God and for His glory. But if we are honest, we just want our loved one healed. We are less interested in honoring God. We just want Jesus to save the day...right now...in our way.

But John includes something interesting in the original language. Right after Jesus declares this will result in God's glory, John wrote, "Now Jesus loved Martha and her sister and Lazarus. So, when He heard that he [Lazarus] was sick, He then stayed two days longer in that place where He was." (John 11:5-6 NASB) John did not have to include the line, "Now Jesus loved Martha and her sister and Lazarus." He could have just reported that Jesus remained where he was for two days. But there is something important in this line and it does not come through in our English translation.

In English, we are interested in when the action of a verb takes place; past, present or future. As in "I loved" or "I love" or "I will love." But the Greeks were more interested in the kind of action. Their verbs tell us if the action was ongoing and this was important to them. It needs to be important for us in this verse. When John wrote, "Now Jesus loved Martha and her sister and Lazarus," he could have used a form of the verb that would translate just "loved." But John used a tense in Greek that is reserved for continuous action. The form of the word love should really be translated, "Now Jesus was loving Martha and her sister and Lazarus. So, when He heard that he was sick, He then stayed two days longer in the place where He was."

This small difference gives us a better feel for the emphasis John is giving. Jesus was loving Martha, Mary and Lazarus in the midst of His seeming nonresponse. Jesus knew the full outcome of the situation. He knows it for ours as well. He even knows it for the people He does not raise from the tomb like Lazarus. He knows it for those He heals or does not heal. He knows the full outcome for those left behind as well. When pain and loss come, we often look to Christ as Mary and Martha did and say, "Lord, if You had been here...if you had just stepped in and intervened, then this would not have happened." Certainly, He knows this. But He knows better than any of us where the true miracle lies in our situation. He could simply fix it and sometimes He does. But maybe the greater miracle is us walking through our situation in a way that glorifies Him and leads others to Him. Maybe the greatest miracle is the change our situation will bring to our lives and the lives of others. Jesus was loving Martha, Mary and Lazarus through His delay. Is He not doing the same for His other disciples? His love is continuous and His response to His disciples' struggles, whatever that response is, will always be in that love.

Thanks to Him and to You

I honestly am not sure what the direction of this blog should be now. It's been almost 5 months since our little girl was here. I miss her so much. This blog has been helpful to me and, as some have indicated, to others as well.

Macayla's story has shaped it and given an opportunity to share our experience, some information, and most of all how Christ has been at work in our lives through this. Now that she is healed, the story has turned in a new direction. Macayla - it is amazing how distant her name can feel sometimes - Macayla has taken a leap into the best story of all. Meanwhile, the rest of us look for what is next. We are not sure what lies ahead or how to even feel about going there without her. It just hurts.

The last thing I want this blog to turn into is a chronicle of grief. It is just hard to write about Macayla without acknowledging the pain. This blog has followed our journey, and the journey has come to where we knew it would, though we pleaded and prayed for something different. Christ is still at work in our lives, of course. He has provided comfort in amazing ways and He has illuminated our hearts and minds to His truth in the midst of this. We wonder if we could have learned this truth another way. I think we could. I wish we had, but this is the way it happened. "What if..." and "If only..." are the enemy here.

I will pray about the future of this blog and how or if it should continue. We cannot express adequately how much we appreciate all of you who have prayed, supported and loved on us for the last five years. I pray any and all who read this realize how awesome Christ is and how He has used you to bring comfort to us. I know that Macayla is whole again. I praise Him for that. I praise Him for working through so many people like you to take care of us. I hope you know that Macayla was born for the glory of God and that His works might be displayed in her life. I hope we can all remember we were born for the same purpose!

The All-empty gOD of Pragmatism

I watch the news and see a barometer of our culture. News outlets tailor their content to attract viewers and thus advertising dollars. So, the stories they choose to cover and the way they cover them is aimed more for their viewers' entertainment than knowledge. It reflects the whims and interest of the culture at large. I heard Tom Brokaw on the Today Show give his "two cents" on the "top" stories. He is a staunch pragmatist. He was asked what he thought about Facebook's CEO giving $100 million dollars to a failing school system in New Jersey. Was it to sway public opinion in the face of criticisms and an unflattering movie about the social network? Tom's answer was that "regardless of the motives, he [Facebook's CEO] gets three cheers for putting much needed money into education."

Tom's answer reflects how many of us think and live. We often worship at the alter of pragmatism in America. We often go for the quick answer if it appears to be "what works." But case in point, why was this NJ school district failing? Is throwing money at it really the best thing to do? Is it possible this $100 million will simply fund more failure? I don't know all of the details of this situation, but our illustrious pundits in the news do not seem to be interested in the details either. Just throw money at it! Surely $100 million can fix it! This fits perfectly with our worship of the all-empty gOD of pragmatism!

Now, before you think I have jumped onto a political soapbox and violated the whole direction of this blog and website, hear me out. I only brought this up because this morning's news reminded me of how easy it is to be so pragmatic that I miss the truth. I can miss that my son's motivations count more than his performance. My motivations count more than my performance. If we let pragmatism govern the way we think and act with family, church and society, then we will be empty. When it all becomes about results, then our value is based purely on performance. Then how do we value those who cannot perform due to a disability? How do we value those who are sick? If we are less able to perform, then we are less valuable to the gOD of pragmatism and his worshipers.

But the true God values us because we were made in His image, not because of our performance. In fact, since sin has entered the world, He point blank said that we cannot earn our way to being good. We can never perform good enough to meet the true standard of good, namely being holy. We all sin. Sin is anything we think, say or do that violates God's word or breaks His heart. That's why He became flesh in Jesus Christ and died for us on the cross. He said that we could never be good enough, but God the Son is. When we trust Him as Lord and Savior, then we have His good placed on us and He gives us the grace and power to overcome our sin as we continue to follow Him. The true GOD destroys the gOD of pragmatism! We start with faith in the true God. Then our works will flow from that faith. For sure, faith without works is dead, but works without faith are empty. I pray I can stay focused on the true God and serve Him, not the shallow gOD of pragmatism. I pray I can show my son that my love for him is not based on performance, but because he is my son, made in the image of God. Pass, fail, or excel, he is valuable.

A Couple of New & Old Items

I've heard from several folks that they stay tuned into the blog, but may not check out the website as often. On Macayla's page I added a video I found that is from 2006 when we went to Disney. I also updated Jacob's page.

Soon, I'll add an edited version of some video clips I found from 2007. It's amazing to see videos and pictures that have been in storage for so long.

Pain makes me a Pain!

Our experiences over the past five years taught us how much we appreciate doctors who have a "big picture" perspective in their approach. Doctors who weigh familial, spiritual, and psychological factors into treatment decisions have been the better doctors for us and Macayla. Sometimes, the treatment approach and interventions have to be weighed against quality of life for not only the patient, but for the whole family. If the treatment tears down the family, this can adversely affect the patient. The doctor who knows this will prepare or at least inform the patient of the broader impact some treatments can have.

We often miss the bigger picture of what it means to be "well." I often whine and complain over headaches or soreness. Pain puts me in a bad mood. Pain makes me a pain to others. When I hurt, I tend to hurt those closest to me with short, impatient reactions. It is shameful. I think it stems from the false idea that being "well" means being comfortable and pain-free. I have grown up assuming pain and illness are the exceptions and not the norm. I think I have held a misguided perspective for too long. The fact is, we are all due for pain, illness, discomfort and even death on this planet. That is the norm. That is part of life. It sounds depressing, but there is no guarantee of happiness, riches, health or abundance on this planet. Certainly some of us are blessed with happiness and abundance, and that is where my problem lay. I have happiness, riches, health and abundance compared to a majority of the humans on this planet and I have taken it for granted. Many people on this planet face pain, death and disease on a daily, if not hourly, basis.

My biggest challenge after church Sunday was where to get lunch. I was going to pay someone to cook for me. I am certainly a wealthy person. I thank God for the blessings He has given us, but I am ashamed of how I take them for granted and hoard them to myself. I am ashamed that I complain and grumble because the line at the restaurant is longer than I would like. I am ashamed that I have let nagging headaches or a leg cramp turn me into a jerk. It is not physical symptoms that threaten my wellness. No, they reveal where the true sickness is: my heart and mind. Paul wrote, "Love is patient; love is kind," in 1 Corinthians 13. When I am impatient or unkind, it is due to a lack of love. It reveals the selfishness that disrupts relationships.

God has blessed me and my family so much, but I must remember those blessings are meant for His kingdom, not my own. Wellness is measured by more than blood pressure or cholesterol. It is measured by our relationship with Christ and others. If we are truly His, then we must put our physical pain in perspective, the perspective of the cross. Our worst day cannot compare with those six hours of the cross. He suffered infinitely more and that gives me strength to bare my pain and quit whining. Our best day cannot compare to the empty tomb. For no amount of fun or happiness here compares with the pure joy of being with Christ from now to eternity. It helps me not get swallowed in my pleasure. It helps me remember that my pain and pleasure are to be surrendered to His kingdom, not my own. That is wellness.

What We Fallback On

Pressure builds. Stress swells. Life has plenty of challenges to offer. When the pressure is on we can fall into some patterns or habits as a way to cope. All of us have our fallback vices and it is so easy to go there.

This past weekend I had the privilege to teach at church on James 5:9-11 and it identified one of the quickest places we tend to fall when the pressure is on. We tend to turn on those closest to us. At the end of a stressful day, a day where we gave our best to our boss or coworkers, we can come home and give our worst to our spouse and children. When we feel the squeeze of finances falling short, we can become consumed with trying to fix, finagle and fantasize our way out of a budget crisis. I tend to over-react in the money realm. Certainly, there are things we must do on our part to be responsible. When the pressure builds, financial or otherwise, we must learn to respond and not react. We must learn to respond with trust in Christ to lead us through.

At one of these moments, I felt the stress mounting. My intellect was buzzing and my gut was churning. I went to Scripture and struggled to find a passage that helped. I know, you were expecting me to say I opened my Bible and found the perfect verse right off the bat and upon reading it, light from heaven filled the room along with the chorus of angels and everything was warm and fuzzy and I'm all better now.

No. I read several of the Psalms. I read parts of Matthew, John, Proverbs, and nothing seemed to fit or make sense. I went back to James, but my brain could not be quiet. My heartburn would not quit flaming. I finally laid my head down next to my Bible. It was open to James 5. I kept praying for wisdom. Praying for peace. Praying for clarity. I kept praying until I drifted off to sleep. By the way, don't feel bad when that happens. Every now and then, we need to crawl up in our Father's arms for a nap.

My light sleep was abruptly stopped when I heard the page of my Bible turn. I looked up and I was still the only one in the room. Now the ceiling fan was on and the draft probably turned the page. I just find it interesting how it had not even nudged a page before this moment. We must remember God can control or manipulate anything He wishes in any way He wishes. Regardless, the page was turned and there was the end of Hebrews. I read:

"Make sure your character is free from the love of money, being content with what you have; for He Himself has said, 'I will never desert you, nor will I ever forsake you,' so that we confidently say, 'The LORD is my helper, I will not be afraid. What will man do to me?' Remember those who led you, who spoke the word of God to you; and considering the result of their conduct, imitate their faith. Jesus Christ is the same yesterday and today and forever. Do not be carried away by varied and strange teachings; for it is good for the heart to be strengthened by grace, not by foods, through which those who were so occupied were not benefited." Hebrews 13:5-9 NASB

My preoccupation with the money needed some perspective. Christ is our Helper and will not forsake us. He has provided everything we have needed and I have no reason to doubt our future needs will not be met. We must do our part to be responsible and shave the budget where we need to. But when this letter was written, there were people participating in rituals and worshiping gods with food among other things. They worshiped idols. But there are so many Christians who have gone before us and endured so much worse circumstances than us and have come out blessed. Not materially blessed necessarily, but rewarded by God in their faith. This great cloud of witnesses spurs us on to endure and trust that Christ is our source of grace. Our hearts will not be strengthened by the pantry, the bottle, the pill or the internet. Our hearts and minds are strengthened by Christ's grace and truth that is unchanging.

On a hard day, we need to fallback on Christ, not our old habits and vices.

Can I Ask You A Question?

On the way home from church tonight, Jacob spoke up, "Dad, can I ask you a question?" When your seven-year-old asks this, it puts you on your toes. Will it be, "How are babies made?" or "Why do some people not stay married?" or "Why did God let me get hurt today?" or "Do you remember that movie where Buggs Bunny and Daffy were in the desert and saw the mirage?" The possibilities are practically endless.

Of course, I have been dealing with a lot of questions lately. We started a Tough Questions small group at church and I have had to analyze a lot of questions over the last few weeks. When people have the freedom to ask anonymously, you tend to get honest questions. Maybe people are worried their question will be taken as irreverent or stupid. But those questions need to be asked and addressed. I believe people want answers to their questions, but I am finding many people just won't commit to finding the answer. Many of the questions I have seen lately have life altering ramifications, yet not many are interested in looking into it, other than asking the question.

When Jacob asks tough questions, I am relieved in some ways that he will not settle for a short version of the answer. He wants to understand it inside and out. That's good...sometimes. Other times it gets annoying when he asks for explanations on every little thing. But I wish others shared his drive to get to the bottom of things. So, anyway. Jacob's tough question was, "Dad, do you remember that movie with Buggs Bunny and Daffy when they..." And he settled for my response of "Yes."

The Stupor

I start Greek class online in two weeks. Jacob starts school in a few days. Jennifer has been shifted to an interim position at work and her schedule is in flux. There feels like so much to do around the house and it feels like it must be done in a hurry, but the reality is it just feels this way. The things we need to do are not needed by tomorrow. I am also looking for work and that is not the easiest thing to find right now. My brain does not seem to be functioning properly and what is normally a simple task suddenly becomes the mental equivalent of an advanced Sudoku game. I actually poured Diet Pepsi into my soup the other night instead of into my glass! I'm just glad I haven't mixed up the anti-fungal cream with the toothpaste!!

I have been painting Macayla's room. I get headaches every time I work in there, but I suspect it is not from paint fumes. Grief creates this stupor. It can stay surreptitiously in the background giving us only random symptoms and frustrations. It can cause multiple psychosomatic pains and never stir sadness once. Other times it seems to stir every emotion but sadness. The end result can feel like there is a hot, suffocating blanket between you and the rest of the world. Grief is difficult on more levels than you ever expect. It pushes you to seek comfort or escape and often in outlets that are not healthy or righteous. We may seek comfort in food, alcohol, drugs, sexual gratification, or a whole host of different options. I even caught myself looking at the International Mission Board website wondering if I could go on a mission trip to India in January 2011. It took me a few minutes to realize I was more interested in an escape than serving God.

Even good things can be turned into an idol. When we replace our Comforter with food, alcohol or anything else, that is idolatry. We are seeking what only God can give through other means. But it means we must surrender to Him, listen to Him through Scripture and seek Him first in our grief. The amazing thing is that He even prays for us when we cannot (Romans 8). There is nothing easy about it. The peace God gives is beyond understanding, but it does not always stop the hurt. It just carries us through the pain.

Nothing Easy About Nothing Special

It is amazing how some of the smallest things can be the toughest. I saw a photo today of Macayla and it was not from any special occasion. It was not from a vacation, birthday or family get-together. It was just a photo of Macayla in her chair on a normal day. It was even from several years ago. It was nothing special, but it was hard on the heart.

This photo that was nothing special suddenly became special and difficult to bear. We have been very busy lately and our emotions cannot always keep up. But they caught me today. How I miss her so. I miss being able to draw that smile out of her, but also how beautiful she was even when she didn't smile at all. I am so glad I got snapshots of both. My photography never could capture the full essence of her expressions, but they at least captured enough to keep the memories close. I know she is healed now, but I still want her back. It is selfish. But Christ has her and He has us too.

So, be sure to take plenty of photos, both with a camera and your memory. Take some snapshots. Some of the best pictures are never posed or planned. The same goes for memories. Just let the shutter fly. It's hard to remember sometimes. After a loss, there is nothing easy about those "nothing special" memories. But I never want to forget!

New Look

Check out the website's new look. There is a bit more tweaking to do, but it's up and running.

Here's Your Sign

So, we are on our way to New Orleans to visit the seminary campus and during a stop-over in Montgomery, AL the weather report above comes out. Tropical storm Bonnie was on its way to New Orleans and would hit two days after we were to arrive. Five years ago, when we moved to New Orleans for seminary, a little tropical system known as Katrina showed up two weeks after we moved in. Of course, we had to evacuate and it was a few months later we got Macayla's diagnosis and God let us stay in South Carolina while she was still with us. We are so thankful for that time.

I was sitting in the hotel lobby in Montgomery, drinking coffee and looking at this weather map. Was it a sign we are not supposed to go back to New Orleans? After Katrina, several folks said the hurricane was a sign we should not be there. Many said this tongue-in-cheek, but several were serious. Others did not even consider it a sign but simply said it made no sense for us to move to such a place and it still doesn't. When I saw the forecast for Bonnie, I heard those statements again. We were headed down just for a visit and the tropics showed out! Well, we continued on to New Orleans and come Sunday morning, Bonnie had simply fizzled out. We were thankful it did not do more.

Is God trying to tell us something in all of this? Why, yes He is! He is trying to teach us that circumstances are not the primary communication tool He uses. If we rely on circumstances to tell us what we are supposed to do with our lives, we will never be settled on our purpose and God's will. God gave us something called Scripture for that. In the case of Bonnie, we could say, "That was God's way of reminding us to stay away from New Orleans." But, since the storm fizzled out we could say, "Look it's a sign God will protect us from the storms now and is confirming we need to move to New Orleans." Depending on our emotional state or how spicy our Mexican food was from the night before, we could come out with all sorts of interpretations of our circumstances.

That is what Scripture is for. It is the filter and lens we are to see our circumstances through. God reveals himself to us in Scripture and the clearer we see Him, the clearer we can see ourselves and our circumstances. But we have to be looking for what Scripture says about Him first. If we pick up the Bible and treat it as a self-help book, textbook, or magic formula to fix our lives, we will be very disappointed. We must seek what the text reveals about God first and from there answers begin to flow. Scripture records for us that Jesus even said, "Seek first the kingdom of God and all these things will be added unto you." (Matthew 6)

So, were Katrina and Bonnie signs? Yes, signs of bad weather! Besides, how prideful and silly it is to think God would orchestrate hurricane Katrina, kill over one thousand people and displace hundreds of thousands more just to communicate to the Smoaks from South Carolina to not come to New Orleans! Certainly God is capable of such power, but He already gave us His direction for our lives through Scripture and much prayer. For some people it does not make sense to move to a city that is located in hurricane ally and is below sea level. It doesn't make sense to us either, except for the fact God said to.

One of the things Scripture reveals about God is that He rarely calls people to a comfortable and posh purpose. It happens sometimes as we see with Isaiah and Nathan in the Bible. But when God became flesh in Jesus Christ, He came to a hard life that was rejected and misunderstood by many. The signs he performed were misinterpreted by many. After three years of ministry and miracles, He had 120 disciples. Definitely not a mega-church! He went to a literal Hell on earth at the cross where the just wrath our sins deserve was placed on Him and not us. This was certainly not "Your Best Life Now" kind of Christianity! There was no smiling at the cross! Christ died at the cross, but rose from the tomb. He called us to take up our crosses and follow Him. If that means we have to go to places that are not comfortable or even dangerous, then that is where we go. This does not mean we throw our brain in the trash can. That is not faith. It means we are to utilize our brains and see what God tells us in His Word and act on it. We have to use our brains, hearts, bodies and souls to serve Him. ("Love the Lord, your God, with all your heart, mind, soul and strength..." the Greatest Commandment.)

So, here's your sign (to quote the comedians). It's called Scripture and prayer. It is God's gift to us so that we do not have to flounder and squirm around wondering what our purpose is. Let us seek Him first, take up our crosses and go!

By the way, God confirmed for us through prayer and Scripture that we are to move back to New Orleans Baptist Theological Seminary. We are working toward starting on campus by next fall.

Child-Like, Not Childish

We just spent a week on Hilton Head Island with a lot of family. It is an annual trip and we have tried to go when we could in the past. This year was full of fun as always, but it was hard for us. Being on vacation without Macayla seemed wrong. Moving on and doing things we as a family need or want to do can even stir up guilt. Of course, we know there is nothing to be guilty about as we have to get on with our lives, but the guilt is there nonetheless. Even the thought of starting back with seminary has a strange mix of excitement and guilt. But we know we have to pursue what God has for us and "move on" so to speak. Besides, even Macayla's last word was "Go!"

The beach was fun and we took our dog Lily with us. She loved the water and wanted to chase every bird she saw, even if they were a quarter mile out in the ocean. She also seems to be on the menu for alligators! A seven-foot alligator was very interested in Lily when we walked along the lagoon behind our condo. Jacob wore himself out and stayed wet, sandy, sweaty, and on the go most of the time. We fished and crabbed with minimal results and ate way too much. It was good to see so many in our family at the same time.

Jacob has been worried over the possibility of moving back to New Orleans. He became upset at one point this week when it came up. He says he wants to stay through the fifth grade at his current school and he is worried he will not have any friends in New Orleans. He simply was too young to truly remember when we were there the first time, but he literally started making friends in the first 15 minutes he was there. We tried to reassure him and I looked for some Scripture on the matter. What struck me was Matthew 18-19. At first this section of text caught my attention because it records Jesus holding children up as examples of what it means to be a disciple. But the text has a message for us all and it was ironic I was studying this while staying in Sea Pines on Hilton Head Island.

Jesus said we must become like a child if we want to enter the kingdom of heaven. We must not import our modern, western ideal of childhood into this passage. Jesus is NOT saying for us to be naive, cute, and uninformed. In first-century Judea, children were third-class citizens. They had little to no rights. Jesus was telling his disciples, grown men, to give up their rights; to humble themselves and put others first. It was radical and insulting in that culture. The idea of debasing ourselves is insulting for our own culture. Later, Jesus teaches his disciples to not prevent children from coming to him for the "kingdom of heaven belongs to such as these." The next person they meet is a rich, young man recorded for us in Matthew 19:16-30. The young man asks what it takes to have eternal life. Jesus responds with a summary of the Ten Commandments, conspicuously leaving out the first four. The man responds he has done all of these things but seems to know something is still lacking and asks as much. Jesus said if the man wanted to be complete he needed to sell all of his things, give the money to the poor and follow Christ. The rich, young man went a way grieving.

Jesus told his disciples it was more difficult for a rich man to get into the kingdom of heaven than for a camel to go through the eye of a needle. This amazed the disciples as their contemporary theology told them wealthy people were blessed by God for their righteousness. If they could not get into heaven, who could? They would have looked around Sea Pines and seen a bunch of righteous people. But Jesus was saying our wealth and possessions can become idols and hinder us from serving him. This is what the first four of the Ten Commandments is about. Peter proclaimed he and the disciples left everything to follow Jesus. What's in it for them? Jesus responded that the disciples will have places of authority in the eternal kingdom and anyone who "has left houses or brothers or sisters or father or mother or children or farms for My name's sake, will receive many times as much and will inherit eternal life. But many who are first will be last; and the last, first." There it is!

This is what Jacob and our family needs. When we consider God's call on our lives as a family, what is keeping us from following it? A house? A comfortable, safe neighborhood and school? A certain income level? None of these things are bad and sometimes we are blessed with them so they can be used for God's kingdom, but not our own. As I looked around Hilton Head Island, I saw great blessing, but I wondered how that blessing was being used for God's glory. It made me wonder if an alternative family vacation could be a mission trip. If I could get my extended family involved we would have a ready-made team of nurses, construction workers, engineers, great cooks, great childcare, and a Bible teacher. We even have an attorney! Our family has all the skill-sets we need to meet a wide range of needs.

In the meantime, we are planning a trip to New Orleans to get reacquainted and seek God's confirmation, one way or the other, if he wants us to return. We hope this Scripture and the trip will also help Jacob gain some clarity as well. Pray for him and us, please, as we seek to be child-like, not childish, for Christ.

A New Friend

Today, we got to meet a family with a special little girl. Stephanie has a mitochondrial condition among other diagnoses. She lit up when we told her how beautiful she was. She cooed at us as we held her hand and smiled so big! She acted just as Macayla did a little over a year ago. It reminded me of when I could make certain sounds and it would get Macayla to laugh a certain way and smile. She would be very responsive. Stephanie transported us back in time a bit. We got to connect with her, and in a way, with Macayla. It was joyful, helpful, tearful and hard all at the same time. I had to restrain myself from just scooping her up in my arms. (Since they just met us, I wasn't sure her mom would understand.) It was good to meet her and play with her. I could have stayed all day. What a big blessing from someone with such a small frame. Thank you, Stephanie and thank you, Lord for her and our time with her.

Macayla's Celebration Video

Here you will see a quick glimpse of Macayla's funeral. Unfortunately, there was no footage of all that we set up in the gathering of family and friends just before the service. But hopefully, it will give you an idea. Gene Ownbey at Edwards Road Baptist Church preached this sermon. I wish I could have shared the whole thing, but Youtube won't allow a video of that length. Thanks to all who have held us up through this.

Funerals

We thank everyone for the continued prayers and support. We still get cards and emails and they certainly show up at just the right time. Thanks.

We are doing well and appropriate overall. We have found a home for almost all of Macayla's equipment so that other special-needs families can benefit. We are still sorting many items and that always seems to stir up memories, some hard and some sweet. Jacob has been very busy and having fun this summer. He seems to be showing the first signs of outward grief. We were told that kids can take as long as six weeks before they even cry. He is a strong kid and like his Dad, he struggles to process and express emotion.

We really want to thank McDougald Funeral Home. They were great to work with and went the extra mile with us. Mark and Wendell were great to work with and were very thoughtful, sensitive and encouraging. They thought of things we never would have. They listened to our wishes and helped us weed through the details.

It is the details and cost of a funeral that can be so overwhelming. We felt like we needed to share a bit about that for other families who are on a similar path to our own. But it is good for all of us to know as we all will make a trip to a funeral home one day.

The cost of a funeral is more than you would expect. We are only sharing this so that others can be more prepared for the financial side than we were. We put money back and pre-paid for part of the funeral, but it was still not enough. Thanks to the generosity of some family and friends, the costs were covered.

The funeral home services were worth every penny to us. That was approximately $4,500 and that covered their services, limos, transporting Macayla, etc. This could have been a little bit more had we held the visitation or the funeral in their facilities. Then there was the obituary in the newspapers. This is the part we struggled to understand. Greenville news charged us $445; Anderson Independent - $94; Aiken Standard - $244; and Williamston - $18. They charge by the line typically and that is understandable, otherwise people would go on and on in the obituaries and take up too much space in the paper. (In fact, some do!) But I just had to wonder why they could not put a reasonable, standard price for a basic announcement and then charge by the line beyond that. Anyway, there is also the costs of death certificates which is not much ($54 for 12 copies). The caskets usually start just under $1,000 and go up from there. Macayla's was very simple and cost $960. If you have a pastor and musicians involved, you will want to include an honorarium for them as well. Such as $100 for the pastor and $20-$50 per musician depending on the situation. The funeral costs were around $6,400.

But there is also the cost of the cemetery. Macayla was in a mosemleum and it is more expensive than a plot in the ground. But the plot requires a vault and the burial, and those are on top of the cost of the plot. I'm not exactly sure of the mosemleum costs as her spot was given to us by family. But I believe it is around $3,000 for the spot and to open and close it at burial. Then there is the marker that goes on it. We spent $1,200 on that. Memorials on grave plots have a wide range of prices depending on how ornate and large. Overall, the cost of Macayla's funeral was about $11,000. This is a lower-end price as we did many things ourselves for the visitation and we did not spend much on the casket. Knowing this can help someone plan for a funeral's cost more effectively and more realistically.

We pre-planned Macayla's funeral, but there were still plenty of details we had to work out in those few days after she passed. Pre-planning does not cover every base, so be prepared. But pre-planning made it all that much smoother once the time came. It is worth it and with McDougald, we were able to pay ahead of time what we could and it went into an interest-bearing account. The money we put in there made more money and that went further in paying for the funeral. Pre-planning and pre-paying is the way to go.

Speaking of all the decisions that must be made between the death and the funeral, it can also help to have someone who will go with you to the funeral home and cemetery and help with the financial decisions. It helps to take someone along you trust and is able to stay more objective because their level of grief is not as heavy as your own. Unfortunately, there are people in the funeral business that will over charge or add services you never wanted. Having a clearer head in the room with you helps. We were fortunate and did not have that problem.

This was our experience. I hope it helps someone else. We thank you all for your continued love. We miss our little girl. We love our little girl. We know she is right where she needs to be and she is loving it. We celebrate with our little girl.

This Far, but no Farther

I am a seminary student and hope to get back to course work soon and even earn a Ph.D. in the near future. But for me, studying Scripture is not an academic pursuit. Scripture is supposed to reveal God to us. Its primary function is to reveal God’s character and from that we can learn what His will is for us. We can see our sin, our need for growth and change when we see God clearer. So, for me, I want to know what kind of God would allow, cause or permit my daughter to suffer the way she did. I want to know if He is cruel and capricious. Is He all-powerful? Is He really in control and if He is, why do we suffer? These philosophical and theological questions are not academic for me. These questions and their answers will shape the rest of my life. The answers to these questions will shape how I go on from here in the face of my daughter’s suffering.

There is an ancient story in the Old Testament about a man named Job. Many people have heard of Job and that he is somehow regarded as “patient.” Very few people actually take the time to read his story. Quite frankly, it is a tedious story to read. It starts with a very troubling narrative that raises all kinds of questions for us as modern readers. Unbeknownst to Job, God and Satan seem to be wagering over Job’s faithfulness and as a result, his suffering begins. From there the story seems to bog down for twenty-nine chapters as Job and his friends argue over his integrity and the source of his suffering. When you finally reach the end of the story, a new character shows up but offers little. God shows up and just when you think He is going to give us some answers, all He does is ask question after question. Job does end up with all of his losses replaced and then some, but as modern readers, we are left with our questions and little satisfaction.

The problem is not that Job’s story fails to answer any questions. The problem is that we are removed from the culture and time this story was written in. We have a hard time appreciating the nuances and implications of its expressions. But above that, our real struggle is we are not always ready for the answers it provides. We may avoid Job’s story out of more than just its tedious design. We often avoid it because it may fuel or confirm our worst fears about God. As C.S. Lewis stated in A Grief Observed, “Meanwhile, where is God?... Not that I am (I think) in much danger of ceasing to believe in God. The real danger is of coming to believe such dreadful things about Him. The conclusion I dread is not, ‘So there’s no God after all,’ but, ‘So this is what God’s really like. Deceive yourself no longer.’” But I have come to the conclusion that if God is all we think He is, then He can handle my questions. I will not be able to stump Him or catch Him in a true contradiction. If God is who He says He is, then I will often find I am just not ready for the answers to my questions. The contradictions will be found in my thinking, not in God.

One of the first lessons we learn from Job is that he was faithful in the midst of success. He was a wealthy man and he had many children. For many of us and our culture, prosperity and pleasure have driven us away from God, not toward Him. It’s easy to angrily ask God why in the midst of pain and suffering, but do we ever ask Him why when we are blessed? Why have You blessed me with a family, Lord? Why have you blessed me with a home and its amenities? I believe we fail to ask this question, because deep down we assume God is supposed to bless us. We assume we deserve it. We also may worry that if we ask why He has blessed us with opportunities and material wealth, He may answer that we are to use such blessings for His kingdom more than our own. We are not always keen on that. But Job’s faithfulness in blessings gave him a foundation to draw from in suffering.

The troubling part of Job’s story is the beginning. For some reason, Satan (the adversary) comes before the throne of God. God asks him from where he has come. Why would an all-knowing God need to ask from where Satan had come? It is like the time God asked Adam and Eve where they were after they sinned in Genesis 3. God knew, but in answering the question, Satan had to remind himself of the distance between him and God. Satan’s answer was that he came from roaming around on the earth. This exposes that Satan has no place in God’s court. When God asks us questions, our answers are meant to inform us of the truth He already knows. Then God brings up Job, “Have you considered my servant Job? There is no one like him on earth, a blameless and upright man, fearing God and turning away from evil.” As an audience, we want to ask, “God, why did You bring up Job? You know Satan is going to take the bait and go after him. Shush!”

It is here that Satan attacks as we might expect. He claims Job would stop being faithful if the blessings stop. So God gives all of Job’s blessings over to Satan’s power, but He does not allow Satan to strike Job directly. Satan struck Job’s vast wealth through raiding parties of foreigners who killed Job’s servants and stole his livestock. Lightening destroyed more servants and livestock. Then a strong wind, maybe a tornado, knocked down a house all of Job’s children were in and killed them. Job receives word of these disasters one after another. There is no time to breathe between the messages. Job tears his robe and puts ashes on his head to mourn. God turned Satan loose and people died! God, why did You bring up Job? But we turn our attention to Job and wonder if he will curse God now. Now that the blessings are gone, will Job do as Satan predicted? Job’s response was to worship and say, “Naked I came from my mother’s womb and naked I shall return there. The Lord gave and the Lord has taken away. Blessed be the name of the Lord.”

Let us pause and learn what Job’s statement meant. This statement has become cliché for many in the church. We use it as if to say, “Such is life, let us move on.” We miss the power of Job’s statement. The original audience would have gasped at this point of the story. That is why the writer had to clarify for us in 1:22 that Job did not sin nor blame God. Job’s statement would have sounded dangerously close to a curse of God. The Hebrew word for “blessed” in Job is the exact same Hebrew word used for “cursed.” It is an intentional play on words to keep us in suspense. Job also said the Lord gave and the Lord has taken away. He did not say Satan took away. Thus the writer had to clarify for us that Job did not blame God. But we want to. We know what Job did not know. We know God handed Job over to Satan. This is where we become deeply troubled.

But it gets worse. Satan goes back before God and God brings Job up again! Satan claims Job is still too blessed! So, God gives permission to strike Job physically but Satan is not permitted to kill Job. Now Job is worse off than before. His body is covered in boils. He is reduced to a shell of a man. Because of his skin condition, he was forced out of the community to sit in community dump where trash is burned. He was so bad off that his friends would not recognize him. His wife who has suffered these losses and is also in the throes of grief told him to curse God and die. We cannot blame her. Job rebukes her statement and says, “You speak as one of the foolish women speaks. Shall we indeed accept good from God and not accept adversity?” Again, the writer had to clarify that Job did not sin because this statement could sound like he is blaming God. But we want to blame God. He started all of this. We want to blame Him and we want to demand an answer from Him as to why this happened.

Satan loses his wager in the opening chapters and we never see him in the story again. But Job’s friends come to comfort him and end up playing the same role as Satan. They came to comfort Job but end up accusing him. This is where the story seems to bog down and go on endlessly as these friends and Job debate the cause of his suffering. Three big lessons can be learned from these tedious chapters. First, Job’s friends provided comfort in the beginning when they showed up and said nothing. It was when they spoke they brought more pain. Our presence offers greater comfort to those in grief more than any words can. Second, these chapters drag on and on and on because everyone in the debate is really unqualified to explain the situation. Only God can adequately do that. When we try to offer someone comfort by making theological statements about God or offer reasons for the suffering, we are really overstepping our bounds. We cannot know the ultimate reasons for someone’s suffering. We may see some results that flow out of it, but those are just circumstantial results, not necessarily the reason. God may use those results, but the over arching reasons for our specific suffering is known by Him, not us.

Third, throughout these chapters, Job’s friends claim it is some hidden sin that has brought on this suffering. Throughout the debate, we wonder if Job’s friends bring him to the point Satan wanted and curse God? Job inches closer and closer to it with many different statements. Slowly, Job seems to come to the same place we as an audience are at already. We want to blame God and demand that God give an explanation. Job begins to ask the same. He wants God to give a reason for all of this suffering.

The lesson here is that God is not aloof to our situation, even in his silence. Job declares he wants to take his case before God. Job logically deducts there is a need for a mediator between humans and God. We are in a fallen world where sin’s effects have impacted every aspect of our existence. God is perfect and holy. The distance between Him and us is infinite. Job points to the need for a mediator. This is the Gospel according to Job. Job’s story points us to Christ. Christ is the mediator who closes that infinite distance between God and us. God became flesh and dwelt among us in Christ Jesus. He lived a perfect life free of sin even though He was tempted in every way. He died on the cross to take the just wrath we deserve for our sin and rose again from the dead to defeat death and sin. It is by the work of Christ alone we can be restored in our relationship with God. Job’s story points us to the need of a mediator and Christ fulfills that need. In our suffering, since we are on this side of the cross, we know exactly who our mediator is. We can present our suffering, our sins, our struggles and our pain to God through Christ.

For those on Job’s side of the cross, Job’s demand to take his case before God sounded blasphemous. Who did Job think he was? After Job’s three friends try unsuccessfully to convince Job of his folly, a fourth friend, Elihu, shows up and tries the same. Elihu is a mysterious character but acts as a transition between the human debate and God’s counsel. Elihu’s function is highly debated, but suffice it to say he sets us up for the entrance of God into the story. Elihu becomes somewhat of a foil for what God is about to do. God shows up in a storm. God speaks to Job and asks:

Who is this that darkens counsel by words without knowledge? Now gird up your loins like a man, and I will ask you, and you instruct Me! Where were you when I laid the foundation of the earth? Tell Me, if you have understanding.

The audience and Job’s friends are bracing for what they think is Job’s demise. God’s speech lays out God’s sovereignty and transcendence Job’s friends have been arguing for the whole time. We expect that God is about to lay it to Job. As God takes Job on a tour of creation and God’s sovereignty over it, we can almost hear his friends saying, “Amen! Bring it Lord and let him have it! Show him we were right!”

But God’s speech is not simply a “might-makes-right” diatribe. He’s not simply saying, “Because I made all of this, you have no say in the matter.” In fact, God really deals with more than just the created items, but declares his ultimate control and knowledge of death, morality, human ingenuity and ability. When God speaks of the donkey, ox and horse, he speaks of them in terms of how humans have used them. We need not be too quick to credit ourselves with the ability to tame such animals and use them. God made it possible for such animals to be used as vehicles of work, war and pleasure. Think of our own technology. Where does the sand and silica come from we use to make microchips? Where do the metals come from we use to make circuits and wires? Where does the oil come from we use to make the plastic housings for our technology? God put it there and gave us the curiosity and ingenuity to use it. When we gain this perspective, we learn we are not the masters of our universe. All of our achievements are rooted in the common grace of God. The fact we can even ask such questions is an act of God’s grace.

But the common thread throughout God’s speech is that he may allow evil things to occur, but he puts limits on it. In 38:11 God declares he told the sea, “Thus far you shall come, but no farther; and here shall your proud waves stop.” Just as God put limits on Satan’s activity in the beginning of the story, God put limits on the forces of evil. He may allow suffering into our lives, but he prevents it from going any farther than it should. Our problem is that the point at which we would stop evil or suffering often does not match up with where God stops it. This angers us, but God demonstrates to Job, his friends and to us that we do not have a big enough perspective.

God could have never given humanity any moral choice and prevented evil, but then that would have prevented us from ever being able to choose or experience love as well. God could have left us in our sin or destroyed us, but instead he became flesh and died on the cross for that sin. God could have allowed not only Macayla to have Battens, but our son as well. Instead, he blessed us with nine years of a beautiful girl and a son who will not suffer from the disease. For our family, God told Battens disease, “Thus far you shall come, but no farther.” Do we wish he stopped it before it reached Macayla? Of course we do, but I know we do not have the whole picture yet. We cannot see the reasons and all of the results yet. But I guarantee that when we get to heaven, we will NOT look at God and say, “That was a terrible plan! What were you thinking?” No, we will be amazed how God weaved our lives, suffering and choices into his plan.

In the end, Job found comfort in two main things. First, Job found comfort in the presence of God. We often experience such comfort and presence when we are surrounded by His people. Second, Job had the promise of restoration and vindication. Our daughter is restored! She is whole now with Christ. Her life will be vindicated when we see the greater plan and how God used it. With that promise, we find comfort. We find we can actually trust God. We discover we can present our suffering and pain before Him because we have the mediator Job longed for. We have Christ!

Radical

I heard this book was out, but did not get to check it out until this week. If there is one book you read this summer, this is it. David Platt was at New Orleans Baptist Theological Seminary when we went down there in 2005. We were able to hear him preach 3 or 4 times and I can still remember sitting in those sermons. I even have them referenced in my journal. David is gifted by God to share the Gospel. He is a prophet for the Church. Now understand that the true meaning of the word prophet and the gift of prophecy is not fortune telling. It is sharing God's truth by and through the power of God's Spirit. Sometimes prophecy has implications and predictions for the future, but its main purpose is to change things in the present.

David's work here is top notch and will challenge us as individuals and as a Church to experience a reality-check on where we are and to give us direction for the future. As David says, "The gospel does not prompt you to mere reflection; the gospel requires a response. In the process of hearing Jesus, you are compelled to take an honest look at your life, your family and your church and not just ask, "What is he saying?" but also, "What shall I do?"

Van For Sale!!

We are selling our handicap van. You can check out all the details on the Uncommon Needs blog. It can be seen and test driven at Haynes Auto Sales on Clemson Blvd. in Anderson. Spread the word to any families that may benefit from such a vehicle.

My Way, Your Way, HIS Way

The divorce rate among special-needs families is higher than other families. Unfortunately, there are differing stats out there about how much higher. Some put it as high as 80% while others put it in the 55% range (compared to about 50% of "normal" families). As Americans we love numbers and always want to know the numbers. As one economics professor told me in college, statistics expose a lot, but not what you really want to know.

Marriage is hard work and the return on that work is great! It is just hard to stay motivated. It's hard to keep at it. Jennifer and I struggled with the daily care and decisions for Macayla. That is sure. But we also struggle with decisions over money, discipline of children, priorities around the house, etc. Now that Macayla has gone home, we struggle with a new stage of grief. It's easy to find myself wanting Jennifer to grieve the way I do. But this is where Jennifer and I are very different. What she finds comfort in can cause me pain. What comforts me is of no help to her. We have struggled over decisions since the funeral because of our different approach to grief. We can find ourselves arguing over what to do with Macayla's things or room. The real problem is that we approach these decisions from a different starting point in our grief.

The fact is, marriage with a special-needs situation is harder than it would be without it. Caring for a person on a daily basis in your home takes time and often the first place we take time away from is our marriage. Those daily decisions can highlight a couples differences. Marriage is also difficult in the face of losing a child. Of course, there are plenty of circumstances that can come along and strain the energy and time we have to put into our marriage. So, it really comes down to the condition of the marriage aside from these situations. How is the marriage in and of itself? That can be a difficult question to answer. It is hard to view our marriage apart from our circumstances. But if our marriage is defined by our circumstances, then we are headed for trouble.

I forget who I first heard it from, but I've heard it many times since. Basically, the marriage must be based on its own relationship. It cannot be based on the kids, social status, circumstances or money. That's what lies behind the vows, "for richer, for poorer; in sickness and in health..." Our most cliche vows capture the idea that regardless of circumstances, the relationship is first. It's easy to want Jennifer to do things my way and even grieve my way. It's easy for her to want me to grieve her way. But we are praying right now we will do things God's way. It's hard, very hard at times. We are thankful for all of the prayers people have offered up over the years for the solidarity of our marriage and the ones they offer now. I keep telling Jennifer those prayers would be answered if she would just do everything my way! I think she feels the prayers ARE being answered by her NOT doing everything my way. What's up with that?

All kidding aside, special-needs families certainly face a daily struggle that is demanding on a marriage, more than most circumstances. But what we are stubbornly learning, is that our marriage has to have a definition found in itself and not in our circumstances. Americans always look at the numbers, divorce rates and statistics, but there are plenty of marriages that have been dead for a long time even though they may never get a divorce. We cannot gauge our marriages by stats and circumstances. We pray with counseling, love and God's grace, we will continue to build our marriage on more than numbers and situations.

Why Didn't He Save the Day?

Throughout our experience with Macayla and even in the loss and suffering of others, I have often asked, "Why?" I have asked this question in anger and in hope. I have asked God why such things happen. Where was He? Why didn't He save the day? It's a question we all ask at some point.

Before we can come even close to an answer to such a question, we need to question our intention. What is our intent in asking the question? Do we really want the answer? Maybe we are looking for our circumstances to be changed more to our liking and could care less about the greater reasons for our calamity. Are we asking the question in anger or is it cynically rhetorical? Are we asking in surrendered faith? Are we asking only while the emotions of grief are fresh but ignore the questions and their answers when our intellect is not drowning in emotions? If we are asking it in order to fuel our present angst or cynical viewpoint; if we are looking for another reason to write off God, then we might as well not bother asking the question.

The question of why is a wholesome and good question if we are willing to let it lead us to actual truth. I have heard some preachers and Christians advise that we should not ask why but "what?" As in, "What does God want me to learn from this?" Obviously, that is a good question for any situation, but asking why is an important step in grief. Multiple, faithful people in Scripture asked God why. Our hearts want to know why, and our intellect wants to know why. To not ask why would starve both of an important step in our growth and healing. The question remains if we are truly ready for any answers. Often the answer to such a daunting and cosmic question will not fit into our preconceived notions about God and life. Skeptics and nonbelievers often accuse someone of my faith as being close-minded. The fact is, to be a Christian means you have to be the most open-minded, open-hearted, opened-souled person of all. We have to or else we would put God in a box. When we are truly open to discovering who He is, then our open minds, hearts, and souls get filled. They are filled with His truth and Spirit. Let us ask "why" but let us also surrender to the Answer.

It's not comfortable. It's not comfortable to put ourselves under the magnifying glass to look for what may be holding us back. What keeps us from seeing the Truth before us? What keeps us from being changed by it? Why does our daily life not reflect what we truly believe? Is our idea of God or what it means to be a Christian even close to accurate? Honestly asking ourselves these questions is not comfortable.

But on the other side of this discomfort, there is a freedom and a newness. The God of the Bible certainly loves us, and so much so that He won't leave us the way we are. He will not waste our suffering. He will not allow it to be for nothing. He will not waste our blessings and fortunes either. Unfortunately, we can be so blinded by our presuppositions, by our anger or cynicism, that we miss it. We miss the opportunity to see God's grace, truth, love and even mercy in the midst of suffering. He doesn't waste it, but we sure can. Being a Christian does not give us a pass on suffering. Being nice does not protect us from pain. This is a world where everyone will face it. The real question is: how are we going to face it? Will we face it in Truth and Spirit? Will we face it and truly keep ourselves open to God? Or will we just see it as one more reason to not trust God and just stay the way we are?

"Why didn't He save the day?" He did! He saved the day on the cross and at the tomb. Sure He could intervene in every circumstance and make it more pleasurable. He, in fact, does at times. But if He intervened every time, when would it end and according to whose definition of "pleasurable" will it be, ours or His? Instead of simply treating the symptoms of this fallen world and its suffering, He cured the disease. When He became flesh, died on a cross and rose again, He defeated the ultimate consequences of sin and death. He gave us a chance at new life, not just in the eternal age to come, but here and now. Will we see it or will we waste it? Let us check our intentions and then ask the questions. Let it lead us to the truth...

Unexpected

We decided to go camping for a couple of days this week. It has been years since Jennifer or I have been and it was Jacob's first time. We quickly discovered many things we needed and didn't bring but the good news was we were only ten minutes from the house. It was great because we were on Lake Hartwell and it seemed like we were far from home, but we were close enough to get what we needed.

Jacob absolutely loved it and did not want to come home. Lily went with us and went swimming for the first time. She was mesmerized by the lake, it's noises and motion. Once she got in, she didn't want to quit. Being a Corp of Engineers camp ground, she had to stay restrained on a leash or line the whole time and she didn't like that. The squirrels and birds taunted Lily from a safe distance. She so wanted to chase them! Jacob loved using the tent he got for his birthday and he's ready to go back. Dad, on the other hand, needs a rest as camping is labor-intensive relaxation!

But on this side of the funeral we have faced many ups and downs. On Thursday morning, I was glad we were camping, away from the house, phone and email. On Thursday afternoon, I wanted nothing more than to be home. We have found our energy level will suddenly drop off and we will crash.

We have been grieving for 4 1/2 years. Our devastating news came with the diagnosis. We have grieved along the way as Macayla lost more and more abilities. That's why our tears were different at the funeral than many expected. But it has been different than we expected. We've always know we could never be fully prepared, but we did not expect the ups and downs to be this frequent and wide in range. There are little things that impact you more than you expect. I pulled a little glass jar out of the dishwasher. It was the jar we always mixed one of Macayla's meds in. This little jar brought on an unexpected flood of emotion. Then there's the back and forth about Macayla's things. One moment I want to clear everything out, and the next I don't want to touch anything. We also are constantly reminded that our schedule does not revolve around Macayla now. That is very difficult. It comes a mix of relief and guilt. We miss our girl.

Again, thanks to all for the continued prayers and support. We also thank so many of you who have made donations in honor of Macayla to the various organizations we mentioned in her obituary. We have been receiving notices daily. We pray that through all of this that people see what a blessing Macayla is, learn about special-needs, find resources that help with special needs, and that the works of God would be displayed in Macayla's life. That's why we share. He has been faithful and given grace and peace beyond understanding through this and He will continue to do so.

Just What Was Needed

For those who couldn't make it or stay for the funeral service, I wanted to share this. Gene brought it up during the sermon. Macayla was born May 22, 2001 and died May 22, 2010. A few days later, we were riding in the van and when I looked up at the rearview mirror, I saw this:

The placard expired May 22, 2010. We would not need this placard another day! When we got this permit four years ago and saw the date, I wondered if we would ever have to renew it.

I Knew, But Now I KNOW

I've been to multiple funerals. Some have been close family, others just friends. I have always known the "wake," "visitation" or "receiving friends and family" portion of the funeral was an opportunity for the family to experience the comfort of others' presence. I always knew it was meant as an opportunity for others to view the body and have their own moment of closure.

I knew this, but now I KNOW in a new way. When we woke up yesterday morning, I told Jennifer I did not want to do this. I did not want to go to the funeral. I did not want to see Macayla's body again. I did not want to be around anyone. But she reminded me I had to. Macayla's life had a purpose and so did her funeral. We could not let her down. I felt drained of energy even before the day started, but after seeing all of the people come in and having the opportunity to interact with as many as we could, I was refreshed. There was no one phrase, cliche, or phrase that did it. It was simply the presence of all the people who love us and Macayla. It was the overwhelming work of God's grace through a crowd of love.

One of the last couples I spoke with had also lost a child some years ago. I shared this with them. I shared that I finally understood how this portion of a funeral worked. I came in depleted and left for the worship serviced recharged. They relayed a very similar experience with their daughter's death years ago. On top of that, we continue to sort the almost two hundred email messages, many cards and the endless supply of food! We are loved and we love all of you for being here.

When Macayla was born, I thought of a possible wedding in the future. Praying for the right man for her. Praying we could pay for the wedding! Praying I could be there to see it. I thought about the day I would walk her down the aisle. Yesterday, I walked my little girl down the aisle. Not the way I expected or wanted. But I took her to the Groom of grooms. Her mother and I gave her away to the best. The Bible speaks in metaphors of Jesus as the groom and the Church as His bride. Macayla had to leave us, but she has cleaved to Christ in the fullest way possible. Thank you all for being a witness and support to Macayla's life and transition to a new life. Thank you all for your prayers and support over the years. Thank you all for just being there, in presence, prayer and thoughts.

Macayla still has a few more things to say. As the next couple of weeks unfold we will try to share those messages. We are still digesting the last two weeks and there are both some medical lessons we can share on the Uncommon Needs blog as well as some testimony to how this process impacts our family and others. Stay Tuned! We love you.

Permission

Many people have questions they don't want to bother us with right now and we understand that. So let me just answer some of those questions for you.

If you are planning on coming to Macayla's funeral, you have permission to laugh, cry, weep, smile, joke, look around, talk to us or not talk to us, see Macayla or not see Macayla. KIDS HAVE PERMISSION TO BE KIDS DURING THE VISITATION AND SERVICE! You have permission to visit with one another, talk out loud, laugh, cry or just be silent. You have permission to NOT manufacture a mood. Come as you are and as you feel. That's what we are doing. No, we are not trying to make it a festival, but we also are not trying to make it a doom-and-gloom convention either. Again, come as you are and as you feel.

As far as children: if there were ever a funeral appropriate for children, it will be Macayla's. We understand if your child does not want to see Macayla and we understand if they do simply out of curiosity. We are purposefully setting up the visitation as a gathering of friends and family and will make it possible for someone to visit with us and not have to see Macayla. The room will be set up so that they can look at pictures, videos and other things and never see us or Macayla if they so desire. But if they do, the option is there as well. This can be an opportunity to have much needed discussions about life but that is not required. Again, we want kids to be kids. Our son Jacob will be there and we are going to let Jacob be himself. We even have a friend he can go to in case he just needs to get out of the fray and get away for a moment. But if there are other kids there, being kids, then I bet he will probably just want to hang out with them.

We recognize our grief. We miss Macayla terribly. That grief will intensify in the weeks to come as life settles back into some kind of routine and Macayla is no longer part of that daily routine. But we also have much to celebrate and be thankful for. Macayla is a beautiful gift from God. She had many hardships but a smile that melted them all. She is still my little girl and always will be. We celebrate she is whole now. Sure we wish she could have been healed on this side of heaven, but we know her healing in heaven is more complete than any healing here on earth could have ever been. Never forget that miracles are temporary corrections in a fallen world. If we are healed of a tragedy today, it does not mean we are immune to other tragedies in the future. What Christ did on the cross ensures a final and complete healing in heaven and that is what Macayla has. We have much to celebrate.

Thank you to all your prayers and messages. We are so busy with preparations, we cannot respond to them all. Please know we are getting them and we feel the love and comfort. We love you and thank you for everything.

The Post I Never Wanted To Make...but

Macayla Grace Smoak died May 22, 2010 in her home with her family around her. It was not only the day she was born, but the day she was reborn into a new body and life. There is no more Battens disease for Macayla.

We will have a gathering of friends and family on Thursday, May 27, 2010 at 1:00 p.m. at Edwards Road Baptist Church in Greenville, SC. The celebration of her life will follow in the same place at 3:00 p.m. Burial will follow at Woodlawn Cemetery on Wade Hampton Blvd in Greenville, SC. Macayla is survived by her parents, Jennifer and Jeff Smoak and her younger brother, Jacob. Her grandparents are Brenda and Keith Scott, the late Tony Foster, Harriet Wood, Rodney and Barbara Smoak. The funeral will be CASUAL ATTIRE! That's right, you read correctly, CASUAL attire.

Please, let everyone know that instead of flowers, we would like folks to use that money for things that have great impact on others. Give it to any one of the following: Family Connection of South Carolina, the Make-A-Wish Foundation of SC, Camp New Hope, Hospice of the Upstate, Electric City Fellowship, or Edwards Road Baptist Church in honor of Macayla. You can follow these links and see how to do this.

Thank you all for your prayers and support. This is the one post I never wanted to make. This is the one post I never want anyone to make. But this post is not without hope. This post lets others know that there is a celebration coming on Thursday. It is a celebration of life. Macayla's death is hard, because her life is so amazing.

It is hard because for her to remain means she would continue to have impact on others here. For her to go means she is with Christ and free of the horrible disease that is a product of a fallen world. Do not pity her for she is free. She is whole. She was blind but now she sees. She was lame but now she walks. She was tired, but now she is at rest! She will not come back to us, but, if we know Christ as our Lord, we will go to her someday. We love her. We miss her. I keep checking my watch and walking back to her room to check on her. But she is not there. She does not need to be checked on any longer! No more meds. No more formula. No more needles. No more pain. I never wanted to make this post, but I've always wanted her to be whole and healed. Now she is.

Healed

Macayla's healing has finally come. She had to do it the way she has often done other changes. She had to wait until I updated the blog! Often I have blogged about Macayla's condition only to have her completely change it the next day and be a different child. Tonight is no exception.

I updated the blog at 11:04 p.m. writing of our uncertainty of when she would pass. At 11:25 p.m. she went home. She just had to get me one more time. Her breathing was much more peaceful at the end. I have ached today more than ever before. I hated to watch her struggle so much. But she made it. She got to celebrate her birthday here with us and now she is celebrating it in heaven! She is whole. She is in the complete rest of Christ. We love her so. I'm not exactly sure how time and space interface with the eternal aspect of heaven, but I know we will see each other again. From her perspective, we may already be there, but from ours, we have to wait. She cannot come to us, but we will go to her. She will remain in our hearts and minds until we are fully reunited again.

This is not the healing we preferred, but it is healing and perfect healing at that. Thank you for all the prayers, love, support, tears, hugs, food, and time you all have sacrificed for our family. We could not celebrate Macayla's life if it were not for our amazing Savior and His people! We love you all.

By the way, Macayla Grace Smoak was born May 22, 2001 @ 7:49 a.m. She died on May 22, 2010 @ 11:25 p.m. She was fully nine years old.

Well...

It has been a surreal and long three days. Each day we did not think Macayla would make it, but she has kept going. Multiple times today, she stopped breathing for a couple of minutes only to start again. We really thought she would not make it past today, but she is within an hour of getting to May 23rd.

Today was her birthday. We celebrated it last night just in case she was not with us today. Pictures will follow soon. But she kept going. As the day has gone on, her respiration rate has dropped and her heart beat has become very irregular. In fact, it stopped briefly a few minutes ago, but then started again when she gasped. She has kept us guessing and she is fighting to hang on.

Some may read these words and think it is good she is fighting that hard and staying with us. It is and it isn't. We do not want to loser her, but watching her over the last 72 hours has been terrible. At this point, we want her to go home. We want her to be completely healed. We want the struggle and suffering to stop. We love her and have reassured her that we are going to be alright and she is too. Jacob has been handling things at his own pace and he gave us some indication tonight that he is handling things better than we thought. He's such a special man and I am so proud of him and Macayla. She has been his little sister in many ways, but she is his big sister and has really taught him and the rest of us so much.

Please pray for full restoration for Macayla. We know that will mean she is in heaven, unless, of course, God decided to completely heal her here. We'd take it any way we can get it, as long as she is restored. Barring any miracle, Battens is 100% fatal. Nothing we do now will change that. We just want her to be as comfortable as possible.

Home Stretch

Macayla was a different child Thursday morning. She struggled through the night with some spastic breathing and patterns. By 6 a.m. she had a dusky complexion and blue lips. Her breathing was erratic and just didn't seem "right." Jennifer tried to go to work, but had to turn around before she even got out of Anderson.

Macayla was in fact different. Her blood pressure, heart rate, respiratory rate and temperature were all swinging wildly. Her heart rate changed a lot but stayed between 120 and 160. Her kidneys have all but stopped. Her breathing has become difficult. There has been swelling in her jaw line and tongue as she has retained fluids. Her pulse has been weak in her arms and legs as the circulation is staying concentrated in her trunk. She had a few "peaceful" spells today where she seemed in less distress. But in the evening, her breathing was sounding really bad and I repositioned her a little. She acted as if she was vomiting, but nothing came out. Because of her tongue and her jaw locked shut, I could not suction her for quite a while. She stopped breathing for almost thirty seconds. I really thought that was it. But she slowly started breathing and then went into a big grand mal seizure. I really thought that was it as she stopped breathing again. But slowly she came back.

We had to remove her feeding tube from her belly and suction because she was leaking huge amounts of fluids from her g-tube site. Sorry, that's gross, I know. But she was soaking her shirt and bed and not comfortable. We are keeping the Ativan and morphine going around the clock to make her comfortable. We have been reassured that she is probably fine from her perspective and is comatose. It's worse on us because we have to watch her shut down.

Several times today, I wondered if I were dreaming. I wondered if I would suddenly find myself startled awake in my bed and find it's just another day. But this is no dream. Often, I have heard or read poetic descriptions of death. Death may have a romantic or poetic side, but dying is hideous.

In spite of this, God has been gracious today. Love has surrounded us. We have laughed even. We have peace, and no, we cannot understand it. Peace does not make it easy or give us a whimsical attitude. It just is peace and is present in spite of the pain.