Pee Is Good

Well, we had to use a catheter this morning on Macayla again, but this evening, she did it completely on her own. We were very thankful for that and she was even laughing. Of course, she may have been laughing at the sheer joy her parents expressed over urine more than laughing over the joy of urinating. But she has felt better today and has had a full feeding without throwing up and without seizures. 

One interesting thing we learned from our neurologist today is that a side effect of scopolamine patches (motion sickness patches we use to control drooling) is that they can sometimes cause bladder retention in kids like Macayla. So, we have to see if reducing the patch by cutting them in half might help with the bladder. But this poses a problem since Macayla is not handling the increased secretions she already has and is choking quite often. We may test out another type of seizure med as well. Diastat is meant to stop seizures, but it only works half the time with Macayla. We may try Versed to see if it will work. 

I got curious as to why we use the term "pee" for urine and it comes from the 18th century euphemism for a "p" word that rhymes with hiss. "Pee" is simply the phonetic spelling for the letter that stands for the, well, "p" word, you know that rhymes with hiss. So, there are two interesting things we learned today. O.k., just one, the side effects of scopolamine patches is just another random useless fact!

Well, all this learning today has worn us out and we are probably not going to watch the New Year come in. We will instead sleep then and wake up sometime between 2 a.m. and 6 a.m to be sure that Macayla is voiding. Oh, the joy of 18th century euphemisms! 

Christmas Changes

Macayla had her seizure on Friday night and we had planned to go to Aiken to see my family on Saturday. We postponed until Sunday and for good reason. Macayla had more seizures on Saturday. Sunday morning she seemed more alert and so we went to Aiken. Things went well, though they were a bit more rushed than we had wanted. We were planning to come home on Tuesday, and that morning Macayla started throwing up. It started just before her feeding so her stomach was empty. She threw up 12 times or more over the course of a couple of hours. Her abdomen was distended and we guessed that her bladder was full and she couldn't void. We had to get a catheter from a local home-health store in Aiken and as soon as Jennifer started to insert, Macayla let go. She deflated like a balloon and she relaxed. It was amazing to see her become so peaceful. We guess the pain was causing her to throw up. But then, she had another seizure. We have really been testing the endurance of our suction machine this weekend. Not only has it been needed for vomiting spells, but she doesn't process saliva and mucus as well as before.

But this is part of a trend with Macayla. Every year since her seizures started, she has changed the most between Thanksgiving and Christmas. She always digresses in measurable ways during those times. In 2005, just before the diagnosis, Macayla stopped running over the Thanksgiving holiday. She never ran again. I believe it was Christmas Eve of 2006, Macayla took her last bite of food, her Nannie's macaroni and cheese. Of course there were changes in her walking and motor control and responsiveness throughout the years, but the majority of the changes seemed to pile up at Christmas. Seeing all of these changes at once always makes you wonder if each Christmas is the last one you will have her. This year is no exception. Macayla has shown loss of tone in her tongue, a sign that her muscles around her airway could be loosing tone. This has made it harder to suction her. Her eyesight has changed this year. Her ability to swallow is almost gone. We also believe this bladder problem is neurologically connected and not merely a mechanical issue. She went a long time without voiding recently and almost got a catheter that time as well. She never seems to void unless she is awake and now that is proving more difficult. As the brain changes, the body changes. Once again, we wonder if this is our last Christmas. It's hard to have a perspective on it when each year we enter new territory in the disease. We pray for wisdom and strength as we enter this territory.

Monthly Seizure

Macayla had a seizure last night just before bedtime. It seems she is having them once a month now. She had a series of them in mid-October. She had more at Thanksgiving and now at Christmas. Interestingly enough, each of these episodes have corresponded with trips to see my family. The mention of my family seems to trigger epilepsy. I wonder if there is a medication for that.

Macayla seems to be better this morning. She's even laughed and smiled some. So, we hope we are not going to see any more today.

Well, the paper ripped, bows flew and boxes piled up, but phase one of Christmas is done. I am ready to hunt down the person who persuaded the toy industry to use plastic-coated wire and twist-tie all the toys into the packaging. I often wonder if it is done by machine or by workers. Either way, I can't help but think that factory workers compete to see how many ways they can twist these wires to make the toy permanently attached to its cardboard panorama. They probably laugh to themselves as they think of the tortured kids waiting impatiently for their toy that stubbornly clings to the packaging. They laugh their evil laugh as they picture the red-faced parents, who bite their tongues to prevent inappropriate words from coming out of their mouths, futilely attempt to free the toy with soar, burning finger tips worn down by pinching and twisting wire. Oh, how they snicker and jest at our expense! O.k., it's a bit overboard and a pair of tin snips removes them in seconds, but it is an absurd packaging process. By the way, if you don't know what tin snips are, it probably means you don't have any.

More importantly, we got to be together. We got a great Christmas present as Jennifer was scheduled to work her normal 12 hour shift, but she was able to work a half shift and not go in until 1:00 in the afternoon. We got to do Christmas morning together and she even got to say hi to her extended family at a midday get-together. Having her home was a great gift. Jacob finished up the 12 days of Christmas. His "iElf" told most of the story over nine days and on the tenth day, the "iElf" who Jacob named Jingle Bells, reviewed all of the lessons we had learned from the days prior by singing to ho down music. 

It was quite terrible from the musical stand point, but Jacob enjoyed it. As part of the 12 Days of Christmas, that left us with Day 11 on Christmas Eve. Jingle Bells the elf went back to the North Pole so we read how the angels told the shepherds of the birth in nearby Bethlehem and they went to see. We also read about three wise men from far away spotting the star and how they headed out to Jerussalem. So, we left it there and went to bed and on Christmas morning, baby Jesus was in the manger and we read about the shepherds spreading the word and the wise men giving Jesus three gifts. Santa brings our kids three gifts to remind them of this. Jacob blew out the candle on Jesus' birthday cake after we sang happy birthday. He brought the baby Jesus over from the stable and pretended it was baby Jesus who blew the candle out. It was a great morning to spend time together and with God. 

The next phase of Christmas will start soon as we meet more family we have not seen yet. But we are prepared with sharp tin snips and hopefully some rest.

What I Want for Christmas...

Jacob and I were in the kitchen making pizza dough. After we had kneaded the dough and got it ready for storage, Jacob was washing his hands in the sink. Out of the blue, he says, "Dad, I think I know a way we can cure Macayla." 

I said, "How is that?"

He said, "We can tell Santa that is what we want for Christmas and he probably has some kind of magical thing that can get rid of the Battens."

I responded, "Well, I think Santa would tell us to rely on God because Santa's magic can't do that. He would want us to let God decide when He will heal her."

Jacob asked, "God is going to heal her?"

"Yes, Jacob," I responded. "He will either heal her while she is with us, or He will heal her when she is in heaven."

"Well, I want Him to heal her when she with us," Jacob said.

"Me, too."

"Why doesn't He heal her now?" Jacob asked.

"I don't know Jacob," I answered. I was thinking at that moment about the fact that we are in a fallen world and that if God intervened on every disease and every tragedy, the intervention would never stop. Instead, He has addressed the problem by bringing a cure for a fallen world through Christ at the cross and tomb and has given humanity time to receive that gift before over turning everything at the end with a new heaven and new earth. Our hope lies in the fact that death and hurt will be no more. This hope is not "wishful thinking" but assurance of that which is to come. But, I didn't think I could explain all of that over pizza dough to a five year old. The fact is, I don't ultimately know why God intervenes in some cases and not in others. I don't know what the greatest miracle of Macayla's life will be. Will it be her healing or will it be how her life will touch and change others? So, all I could answer Jacob with is, "I don't know."

But I asked him, "Do you think you could pray about that?"

Jacob answered, "Yes." Several hours later at bedtime, on his own, Jacob prayed that God would stop Macayla's seizures and take her Battens away. That is my prayer as well. But, Jennifer and I must admit that if her healing means she must go to heaven, then we selfishly tell God, "Heal her, but not today." We have to pray for Him to give us peace and reliance on His wisdom and timing as it will be infinitely better for Macayla than ours. Still, Jacob, Jennifer and I really want Macayla cured, with us, for Christmas.

Mr. Bean at Christmas

This kind of humor may or may not appeal to you, but I am a fan of Mr. Bean

Some Additions and Updates

First off, Macayla is doing fine. She does not feel well with the antibiotics on board, but hopefully that will pass when we finish them next week. That will be a good Christmas present. I hope she will not be as lethargic when we are through the medicine. She did get to go see her friends at school this morning for a short visit, and only a couple of them were there. The kids are out till the first week of January and Jacob is not all that excited about it. He likes school. I wish it would stay that way.

I also wanted to draw your attention to some additions on the blog. I have three feeds coming to this blog as well as Jake's Watering Hole for convenience. They are articles from Living On The Edge by Chip Ingram, and podcasts from Let My People Think by Ravi Zacharias, and Key Life by Steve Brown. In my view there are only a few decent preachers and teachers on the radio and these three are top notch. Chip Ingram opens the Word of God in ways that hit home in everyday life. Ravi Zacharias always makes you think and helps me understand why I believe what I believe as a Christian. Steve Brown has a unique way of cutting through the bull to the heart of the matter and has a great sense of humor to go along with it. When you click on it, it should just start playing on a blank screen with a toolbar for starting and stopping the audio. It is pure audio, but if you want more info on any of these guys and their ministry, their links are on these blogs as well. I hope it is as helpful to you as it has been to me.

On a lighter note, I just baked my first loaf of bread from scratch! It actually turned out pretty good for someone who doesn't know what they are doing. The recipe I used was called Pillow Bread, and for good reason. The finished, rustic loaf was the size of a pillow!

Yeah, He Figured it Out!

Jacob is really questioning the whole Christmas thing. He has figured out that the iElf is really my voice. He asked me if I was the one buying the little treat that he finds with Joseph and Mary. Then he asked Jennifer if Santa is real. May I remind you that he is 5?

In light of how commercialized and selfish the Christmas season has become in our culture, we are not going to fall on our sword to protect the secret of Santa. Jennifer told Jacob the story of St. Nicholas (the historical person) and how he surprised poor people with money and things they needed. Jennifer said she believes in the real St. Nick who gave to people in need and did it in the name of Christ to remind us all that Christ is the true gift of the season. Jacob said he believes in the REAL Santa also. 

In our consumer culture, even the idea of Santa has become polluted. He is a magical figure whose purpose is to meet our materialistic desires. The concept of being naughty or nice flies in the face of gift giving since we essentially are telling our children that if they are good, they get presents. If our good behavior earns a gift, it ceases to be a gift. It becomes payment. Gifts should be given out of love and the last thing I want Jacob thinking is that our love for him is conditional upon his performance. The last thing I want him to think is that he is loved more when he is good and less when he is bad. Santa and the gifts at Christmas should point us to God's grace, the free gift we never deserved because we are all on the "naughty" list in God's eyes. The gift of Christ came so that when he went to the cross for us, for our naughty ways (i.e. sins), God could look on us without condemnation. Christ moves us from the naughty list to the "nice" list, we don't do it on our own ability. Jacob is having fun trying to find Mary and Joseph each morning. He enjoys the treats he gets with the story of Christmas each morning. I hope he also grasps the real spirit of Christmas and not the selfish, consumer spirit of our culture. 

He's Too Smart

Jacob has things figured out. I already posted tonight that he is doing well with the 12 Days of Christmas. You can look on Jacob's World if you are just now catching up. Just before bed tonight he asked me, "Dad, are you moving the elf and Mary and Joseph each night?" 

I responded, "Jacob, the elf is following Mary and Joseph around and telling us about their journey."

He said, "That means you're the one moving them. Dad, they are just pretend. Just look at Mary and Joseph. They are too small to be real people."

I had to admit it. Some kids think these elves are magic, but Jacob knows a prop when he sees one. But he still enjoys searching for them each morning. Here is a sample of what he hears when the elf "speaks":

Now I wonder when he will figure out whose voice it really is. 

This whole process has helped me with the Christmas story and being more prepared to celebrate the season. That's why I share it on Jake's Watering Hole. There is more that can be shared from the texts than what I am posting, but this is just a little of what has helped me.

Hoping to Brag

I was hoping to brag today that Macayla was doing really well and getting better, but she couldn't let that happen. The good thing is that her fever has stayed away and her diarrhea finally seems to quit, but I make that statement cautiously. Today, she was very lethargic. She would smile some, but mostly she was out of it. We were trying to load up to take Jacob to school this morning and discovered the van would not crank. I jumped it off with my father-in-law's truck that happened to be here. Got it cranked and loaded the kids. When I put it in gear, it cut off and was dead. I had to jump it off again just to unload Macayla with the lift. I decided to break Macayla's chair down and use the seat as a car seat. That's when the rain started. I put Macayla in the middle of the front seat and had Jacob stand up in the extra cab area and hold her up-right from behind. Right as I am putting the seat in next to Macayla, she heaves and throws up and Jacob was not strong enough to hold on to her so she fell over to the side and hit her head on the hard bottom of the seat I was putting in. The rain picked up. Needless to say, Jacob was late getting to school. He only got there when my father-in-law was able to come and sit with Macayla. She has been fighting mucus all day and that has made her breathing uncomfortable. I take for granted the ability to clear my own throat. How frustrating it must be for her. Anyway, she is o.k. but I wish she were better.

Jacob has done great with the 12 Days of Christmas. He gets very excited and seems to be retaining the main points along the way. It has definitely helped me get more into the spirit of Christmas and more prepared to worship instead of grumble. 

Macayla is Smiling

Macayla seems to be going in the right direction for now. She is still fighting diarrhea caused by the antibiotics, but it is not as often now and she seems to be feeling better. Her fever has not returned and her breathing is better. She has smiled a lot today and laughed a good bit. We did get out for a little while with her today, but we have had to stay close to the laundry for days now. 

I'll try to post some photos of Jacob with the 12 Days of Christmas that starts tomorrow. He's pretty excited about it.

Mac Update and the Funeral

It seems that every year since Macayla started having seizures, she has gone through the most changes between Thanksgiving and Christmas. This year is no exception. She has lost her sight and a lot of tone. She even seems to be losing some tone in her tongue and is consistently going through cycles of lethargy to wakefulness for days at a time. 

During the night, she had difficulty breathing a couple of times and had to be suctioned because of all the mucus. She had a lot of diarrhea and was generally uncomfortable. Her fever has stayed down thankfully. She did well today while I went to my grandmother's funeral. Jennifer said Macayla was alert and smiling a lot while BB and Papa were here. She was the perfect angel while they were here! The only thing now is that she has not voided all day long, so now we are wondering if the infection is really a urinary tract infection. She just keeps us guessing.

As far as the funeral, it went well. We are thankful for everyone's prayers. My grandmother planted seeds in my life that didn't start sprouting until much later, but I am grateful for them. She is a believer and is now in the eternal arms. God's grace was evident at today's service. I kept my voice in spite of the cold I am fighting and my uncle who gave a eulogy was able to share a perspective that made me appreciate the legacy of my grandmother even more. She was used by God in so many ways. My family will need continued prayers as her absence sinks in over the holidays. Thank you again for all of your prayers.

Bad Timing

My grandmother (my Dad's mom we called Mimi) passed away on Sunday afternoon. She was 88 and had suffered senility for several years. I went down to Aiken to be with Dad and family as plans were made. I came back to Anderson late last night and shortly after I got home, Macayla started throwing up. She was not having any seizures that we could tell. She had a fever and redness around her feeding tube. She threw up again at 4:30 in the morning and suctioning her was more difficult than usual. We think she has an infection around her tube so we started antibiotics today. 

This afternoon, she started smiling again and her fever broke. Hopefully she will be able to go with us to the funeral, but it may be that just Jacob and I go. I will be conducting the service but I caught a cold from my family yesterday and I am hoping I keep my voice. We are praying that Macayla recovers fast and for safe travel as many people come from some distance to the funeral. 

Twelve Days of Christmas...Story

By the way, we are planning to take Jacob and Macayla through the Christmas story over the days leading up to Christmas. I divided up the Scripture readings and it turned out to be 12, so we will have the 12 days of Christmas story. That was not intentional on my part, it just worked out that way. The plan is to use the Mary and Joseph figurines from our nativity set and starting on the morning of the 14th, Jacob will have to wake up and find them in the house. We will read about the fact that they have to go to Bethlehem. Each morning, they will be somewhere else in the house and Jacob will have to find them. When he does, he'll get a treat with the Scripture reading. I plan on putting those reference on Jake's Watering Hole as we go. We are basically going to start with Luke 2:1-5 which basically says that Mary and Joseph have to go to Bethlehem for a census and that Mary is pregnant. The next 11 days, we will "flashback" so to speak to see what has led up to that journey and eventually where the journey takes them. Our hope is that this will help Jacob start forming a better concept of what this season is truly about. The consumer mentality of our culture makes it difficult and the fact that so much of our culture refuses to recognize Christmas. I don't expect non-Christians to act Christian or be forced to celebrate it, but if people do want to celebrate it then they should acknowledge why the holiday exists. Some businesses and schools say they are going to honor all traditions by not using Christ in Christmas. I'm not sure how they can honor a tradition by excluding it. If they truly want to honor all traditions, then they should acknowledge them. Let Christmas be Christmas. Let Hanukah be Hanukah. To ignore a tradition in no way honors it. 

I we can keep the focus this season as we read the Christmas story.

Laughter

Macayla has worn herself out laughing a couple of nights this week. It seems that around four in the afternoon on Wednesday and Thursday, she would get giddy and everything she heard or felt made her laugh. I could kiss her on the cheek and she would laugh. Saying her name made her chuckle. Jacob started joking around with her and being silly to which she laughed constantly. She got to the point that she had tears in her eyes and had trouble breathing. It was the kind of laugh that is hard to stop once it starts and it makes your sides hurt. I grabbed the video camera and started recording it and much to my frustration, I recorded the first minute or so WITHOUT sound! I clued in and turned the mic back on and got some of it. She really seemed to have a good time, but she was worn out on Friday.

Jake's Watering Hole

When we find something good, we can either hoard it, or we can share it. On the right you will see a link to Jake's Watering Hole and on it I have been adding links, video, sermons, etc. that have all helped me. I will include writings, podcasts and videos from the likes of Ravi Zacharias, Chip Ingram, William Craig Lane, and other sources that God has used to help me. The books shown down the right side of the page are linked to resources where they can be purchased. These books represent multiple views on various subjects. Some are more in-depth and scholarly in direction, and some are more devotional in nature. Some of the sermons posted will be ones I have preached simply because preparing those sermons have convicted and helped me. My hope is that by sharing them they will help others.

Why the name, Jake's Watering Hole? John 4 records a story where Jesus meets a Samaritan woman at Jacob's Well, a landmark in Samaria and historical site important to the Old Testament. Jesus informs the woman that the well provides water that temporarily sustains, but that Jesus provides "living water" that sustains us forever. "Living water" was a technical term for good drinking water from a spring or well that was not stagnant or polluted. Jesus says his living water becomes a well-spring in us that overflows. This living water has sustained me and my family and I hope to let it overflow to others in any way I can.

Thanksgiving

Those first settlers in America had some tough first  years in the "New World." Whenever I have travelled to the northeastern portion of our country in the colder months, I often wonder why settlers ever stayed there. I would have gotten back in the boat and travelled south and settled somewhere like, Charleston, SC or the Bahamas. I think the folks who settled there were smart. But with the harsh winters and struggling crops of those first northern settlers also came blessings and harvests. They eventually reaped the benefit of their labors and as a result, we have a holiday called Thanksgiving. It is truly gratitude inspiring when survival is replaced with security. 

We are thankful. We are thankful for all of you who pray and support us. We are thankful for all that God does through you because you are willing. We get emails and comments through the website. We receive letters and cards of encouragement and prayer. We are covered in prayers, some we see and some we don't, but God's grace sustains us through them all. One of our main prayer requests on the website is protection for our marriage. That prayer is being answered daily. Many times marriages can be destroyed by circumstances like ours. It has become common in adulthood that many of your friends are getting married around the same time and later start having babies around the same time and then many start getting divorced around the same time. We hurt for and with the friends we have that are going through that. It reminds us to become more reliant on the Lord for strength in our marriage. Your prayers have contributed to that strength. We are thankful for Macayla's remarkable life and how she has maintained as well as she has. We are thankful for Jacob and the little prophet of God that he is. God teaches us all the time through our children. We are thankful for our extended family that is constantly pouring support and love into our lives. We are thankful to our church families that pray and support us. Over the last few years, the body of Christ has helped to meet our physical, emotional and spiritual needs. Meals, prayer, housing, money, home improvements, hugs, letters and fellowship have all been used to bless our family. We recently received notice that a Sunday School class some friends of ours are a part of at First Baptist in Lincolnton, NC donated some money to the Virtual Toy Drive at Greenville Hospital in honor of Macayla. That was meaningful for us as it means that other kids will benefit as they face their own struggles in the hospital. 

Like the early settlers, we are inspired to gratitude as our survival mentality is being replaced by security. Security in Christ and His will for our lives. It is great when all things go the way you like, but that is not the world we live in. But the world we live in and the circumstances we are going through has taught us much. It will continue to teach us and grow us. We are thankful for all of you and we pray that Christ will bless you and that maybe He would work through Macayla's life in some way to draw more people to Himself. That is a legacy I pray for in Macayla's life. In short, we are giving thanks for Him, for her, our family and all of you.  

We love you, all. 

The Smoaks

MRI

We just got the images from Macayla's latest MRI. This video is a bit fuzzy because it had to be small to upload, but it will show a comparison of all her MRI's from approximately the same cross section location. 

Notice how the natural open areas (ventricles) within the brain are opening up more and getting larger. The least effected area of the brain is the temporal lobes (bottom, toward the front) and that would help explain Macayla's memory being as good as it is. As I look at these images, I am amazed at how much she can do. It is amazing to think that a person can have a tumor the size of grape in their brain and it cause so much havoc. By that standard, you would think that when more than half of the brain has atrophied, that a person would be dead. But, amazingly, Macayla still laughs, makes vocal noises, listens to us when we talk to her, knows who we are, and has some of the cutest stretches in the morning when she wakes up. I love to watch her yawn and stretch her arms over her head when she is waking up. It gets both of our mornings off to a good start.

Blindness

Well, it seems to be official. Macayla seems to have lost all of her sight. Until recently, she was still responding to light. We could turn on the overhead light in her room and she would look up at it. But now she does not respond to it. She no longer responds in a dark room to a single source of light, static or flashing. We just had an appointment with the eye doctor and he stated that based on what we were describing as far as her responses and the condition of her optic nerves and retinas, that he believes she is no longer processing light. Her hearing has become extremely sensitive while all this has been happening as well. She jumps at sudden sounds, even if they are not that loud. We are so thankful that her sight stayed active as long as it did. Most kids with Battens lose their sight early on. But she was still responsive to light and shadows this past summer. It has given us some great moments of joy when she would be in the midst of a series  unorganized movements and suddenly pause and look at us. We are thankful in Macayla's case especially considering she has been such a strong visual learner. She really kept her sight longer than we anticipated. We praise God for that and we praise Him that her memory has held on for so long and that she is generally happy and smiling.

Another Seizure

Yesterday morning, Macayla had another seizure. I was washing her hair and about to start blow drying when she started. It really was without warning. In the past she has seemed agitated for a period of time before the seizures. But she was acting normal before this one. It lasted about 2 1/2 minutes and then she seemed to pass out. About 5 minutes later, she started smiling. She has never done that after a seizure. She smiled and then slept for about an hour. Then she perked up the rest of the day and even was a bit agitated in the afternoon. So, far that has been the only one and it has been 4 weeks since her last one. There definitely is no rhyme or reason to these things. 

Growing Up

Macayla is growing up. She is 7 years old, but she is already experiencing some of the "changes" so this week during a doctor's visit we decided we would talk to an endocrinologist. We would like to prevent Macayla from having her menses if possible so that she does not experience all of the discomfort and pain associated with it. Some have found such treatment controversial in other cases. Usually the ones speaking out against it do not have a special needs, brain-damaged child. Macayla is 7 but in many ways functions on the same level as a 2 month old. She has a limited time left and plenty of discomfort and pain to go through. So, if we can minimize or remove any of that pain and discomfort, we will.

Still, it is hard for me as her Dad to sometimes deal with all these "girl" things. Jennifer laughs at me a good bit, but hey, I'm a guy. Womanhood is still a mystery to me on so many levels. Honestly, I thought we would never see the day when Macayla would go through this, but as it turns out many kids with brain disorders can start early and in some cases they can start really late. I guess we get the early category. I'll update as soon as we learn what endocrinology can do. This will be a learning experience.

Honest Lyrics

This morning, I heard several praise and worship songs on the radio. Lyrics like, "All I do, I do for You, Jesus. All I go through, I do for You, Jesus." Or, "Every step I take, I take in You." Every time I hear a song or hymn with these types of lyrics, I struggle to relate. When I think about it (and be brutally honest with myself) I realize that many "steps I take" are not taken in Christ, but for myself. It would be impossible for me to claim that "all" I do is for Christ. It is lyrics like this that are frustrating because it's hard to take them as representing reality. They may represent a feeling and desire to live in such a way, free of selfishness and full of devotion, but I find that I so easily function in selfishness and my devotion so easily turns to my own agenda. 

If I were to write these lyrics over, I would insert, "Lord, help me to..." As a father, husband, in-law, etc. I would have to write lyrics that would in fact say, "Lord, help me to listen even when I don't feel like it." "Lord, give me love so I can be patient and kind." "Lord, help me follow your steps so my children will follow mine to You." Most of all, my song would always have to include, "Lord, forgive me for doing it all for me and not for You." So many songs have been written over the past couple of centuries that reflect desires to be good disciples. But we also need those songs that remind us how we fall short of that desire and can only rely on the "amazing grace" that would save "a wretch" like me. The Lord is amazing and I pray that I will rely on Him more to make my life into a song that honors Him above all. I need His song in my life, because it is evident that I am no song writer.

6 Weeks

Macayla made it 6 weeks without seizures, but they returned on Friday last week. We had reduced her Clonapin to see if she could be more alert and interactive. She became alert, but she had a seizure in the van Friday afternoon. We went back up on her Clonapin and she has had no seizures since Saturday morning. The interesting part was that Macayla started having some rigid tremors in her arms for three days in a row and it was on the third day she started the seizure activity. Her arms had not had those movements for six weeks. It makes us wonder what is happening in her noggin when all this starts. In spite of going back up on her clonapin, she has stayed fairly alert. She has been laughing a lot at her brother. She has been playing a game where she throws her head forward and it falls over to the side of her wheelchair. She thinks it is funny even though it sounds and looks like it would hurt. We tell her to put her head back and she laughs at us. It has become a game and we have had to pad the side of her chair. She is growing like crazy and is 66+ lbs. She seems to be having trouble with her skin. She has rubbed one of her knees and one of her elbows raw in the bed. Unfortunately, they are not healing as quickly as she used to. Hopefully, we can control that more soon. We are so blessed by her and thank God for her each day. 

Grace

I recently heard the comedian Chonda Pierce say, "Depression is the gift that keeps on giving." I must agree. It is one of those things that never quite goes away. It may hide for a while, but then it sneaks back in and before you recognize it, the exhaustion, the desire to be alone all the time, the unexplainable aches and pains of the body all come back. It is easy to turn to a gift like food to cope. Certainly chocolate can make it better! But food is a gift from God that was not designed to be an antidepressant on a plate. It is a perversion of such gifts to turn them into coping mechanisms. Instead, God gave us a gift that was specifically designed to help us cope in this fallen world. Grace. Grace is God's gift that sustains us in the midst of suffering and circumstances beyond our control. It is also the gift that frees us from our own sin and habits that draw us away from Him. Depression is an ongoing struggle and it easily removes our reason and reliance on Grace. I thank God for great tools like doctors and appropriate antidepressants. I thank God for great tools like counseling. Most of all, I thank God for His Grace that is sufficient beyond all measure to guide us through and restore us in the midst of a fallen world. 

Drugs and Adolescence

Macayla has made it more than 4 weeks without a seizure (that we know of). But she has been very lethargic and sleeps a lot more than normal. We have been cutting out medications that could cause her to be sleepy. We took her off of a seizure medication (Zarontin) that no longer fit her type of seizures. This made her Lamictal levels increase by only a few points, so at first we thought that may make her sleepier. So, we removed her melatonin (natural sleep medication) and that has not helped. We are now trying to cut back on her clonapin which is a anti-anxiety/anticonvulsant to see if that helps. If none of the medication reductions change her energy level and alertness, then it may mean that we have reached that point in the disease where she is simply slowing down. We just want to make sure she is not taking medications that are no longer necessary and that will help her to be less "doped up" and alert as possible. 

Talking to a nurse who works in hospice, I was told that many patients will go through cycles of sleepiness for multiple days followed by a day or so of alertness as they draw closer to becoming vegetative. We don't know if that is the cycle we are beginning or not. EVEN if it is, a vegetative state would still be quite a ways down the road. Another possibility is that Macayla is simply being an adolescent. She is only 7, but she is experiencing some hormonal changes and may need some extra sleep. (Our pediatrician explained that these changes can occur earlier in kids with neuro-problems.) Adolescents tend to sleep in late, so she could be experiencing that hormonal drag of prepubescence. So, maybe we simply have sleepy-headed pre-teen in the house! Drugs and adolescence can be such a drag!

Three Weeks

We have made it three weeks since Macayla's last seizures started. We hope to make it another week. She has done well with school this week, but overall Macayla is more lethargic than she was at the beginning of the summer. We will be doing another MRI soon to track where we are. It will probably be the last one we do. Macayla now weighs 66 lbs. and is 52 1/2 inches long. Thankfully, the nutritionist does not want to increase any calories at this point. My back can't take anymore calories on Macayla (or really on me for that matter.) 

You may notice that there is a new link below along the right side of the blog. The Chocolate Funny Farm sells chocolate and coffee (two of my favorites) and many other items related to chocolate. Check out the t-shirts. It might give someone some great Christmas ideas and it is a business that has been started by our pastor's wife, Susan. By supporting their business, you support their ministry as it gives them much needed income. So, check out their website and don't be shy about buying chocolate for the guy who writes this blog! I know I just wrote that I don't need any more calories, but I could be persuaded to forget what I wrote.

You Want A Piece of Me?!

There are times when it feels like everyone wants a piece of you, but there is only so much of you to go around. The kids always need something. The spouse needs to discuss decisions that have to be made. The phone company wants their bill paid. The neighbors want you to finally cut your grass. Besides the logistics of a home and life, we have to invest so much relationally and emotionally in others. Sometimes it can seem overwhelming how much people want from you. I have found myself wanting to get away by myself for a few hours only to find I can't because my family needs something else. 

Jesus was having a rough time. He went to his hometown only to be rejected and dishonored. Meanwhile, his cousin and friend, John the Baptist, was executed by king Herod. Jesus hears of the death and retreats to a secluded place to be alone. He wasn't dealing with simple things like phone bills, lawn care or dirty diapers. He was rejected by the people he grew up with. He lost a family member and friend to a ghastly death. But while he was in this secluded place, the crowds of people found him. He had compassion on them and healed their sick. I would have run the other way, but he gave them what they needed. He even fed 5,000 of them miraculously. Then he sent his disciples out in a boat ahead of him while he said goodbye to the crowds. Then, finally, at the end of the day he gets his time alone to pray. But as soon as he is finished, he has to save his disciples in the boat from wind, waves and a lack of faith (Mt 14). 

I find myself becoming impatient at how much Jacob wants to talk to me. Five year olds have a lot to say. I want to tune him out at times, but Jesus never tunes me out when I want to talk to Him. I so often want to get away from home to be by myself, a home where I am loved and accepted. Jesus was rejected at his home. John the Baptist's imprisonment and subsequent execution directly resulted in John's belief in Jesus. How did Jesus feel about John's persecution on His account? How does He feel now when people are persecuted for Him even today? He said we would be blessed when persecuted for His sake, but it doesn't make the persecution easier. In the midst of grief, Jesus showed compassion when I would show selfishness. I'm not even being persecuted. I'm just dealing with life. That is a blessing I take for granted. I can only pray for his grace and love for they are obviously and infinitely sufficient in my weakness. 

Two Weeks and Counting...Oh, never mind!

Macayla went to therapy on Wednesday, two weeks since her last seizures. During therapy, Macayla turned pale/gray and the color left her lips, but she did not seem to be having a seizure. We were thankful that the two week mark came and went without a seizure. Then on Thursday, Macayla had one at school just before dismissal. She threw up and it lasted thirty seconds to a minute. When I got there she was asleep and stayed asleep for 6 hours. That was without Diastat! She then had two more last night and one more this morning. The neurologist saw a video of Macayla's last episodes and suggested that it might not be seizures but reflux. We are having a hard time understanding how reflux could cause all of the symptoms we see. It certainly could cause the breathing problems, vomiting, and rigidity. However, we want to learn more about it and see how it could also cause the lethargy afterwards or the "epileptic cry" she has had before some of the episodes. We also are wondering if it is both reflux and seizure activity together where one triggers or leads to the other. For now we have increased her reflux meds and experimenting with slower, more continuous feeding.

School

The kids have done great with school. Macayla smiles a lot when we talk about it and seems to enjoy it. The teachers say she is still responsive and smiles. Jacob has adjusted great. Keep a check on his page soon. He is excited about school and I just wish that excitement would last the rest of the time he gets an education. His teachers are really nice and they have great ways to get Jacob motivated.  Jacob's classroom is directly across the hall from Macayla's. We are fortunate to live in an area where the schools are this nice and full of great people. By Anderson real estate standards, we don't live in the "most desirable school zone," but we have had a great experience here. I think if people here saw the condition of schools in places like New Orleans or even in Allendale, SC, they would realize what a blessing we have in our schools (even the "less desirable" ones in the real estate market). We have great teachers and great facilities. It's not perfect, but opportunities abound for the kids and almost all of the teachers we have met truly care about what they are doing. Most of them we met are driven by their faith in Christ. Even though they can't openly express faith in a public school, the values and love still shines through. That is one benefit of living in this area. We are fortunate to be where we are and we are thankful.

Summer's Over

We spent the past week in Pigeon Forge with Jennifer's parents and my mom. It was a nice get-a-way and nice to be away from the house and Jennifer's work. Jacob and Macayla got to feed some goats and deer among other critters at a petting zoo. (Look for pictures soon!) Macayla did have her bout with seizures while we were there, but it was a good trip overall and a blessing. Jacob got some great quality AND quantity time with us as well. 

But this week, the kids go back to school. I admit that I am very ready for it. Having both of them home all summer has been great but it is hard work. The other day, I realized how wrapped up I have been when I looked at my journal and blog. It has mostly been event recording and very little reflection on what God has been doing in our lives. We have been adjusting to these seizures over the summer. We have been taking multiple trips. We have had plenty of family events and plenty of fun. Unfortunately, I have had little reflection on all of it. This morning we went to worship this God I have been distant from. We went to worship the Father I have ignored as I have stayed wrapped up in my own little world. 

This particular Sunday, they brought the children into worship during the music and they sat down at the front. Jacob was with them and they were clapping to the music. Jacob was off beat with his clapping, but it was earnest clapping! I suddenly realized that maybe I'm not as sophisticated as I like to think. Maybe as an adult, I can keep beat with a song better than a five year old. Maybe I can accomplish commendable things (humanly speaking) in a job or as a stay-at-home parent. But when the Father looks down, does He see me the child acting earnestly, but still off beat? Are all of our accomplishments simply child's play in this passing summer? I think when the full veil is pulled back and all is fully known, we will be amazed at what accomplishments we once thought so important were mere rubbish, while the things we considered small will be the most significant. One day, as Jacob grows more coordinated, he will clap in rhythm with songs better than he does now (unless, of course, he takes after me!) but I hope he claps just as earnestly as he does now when it is for the Father in heaven. I hope that in all my business; in the midst of all the things tugging for my time and energy, that I will do them in earnest acknowledgment of the Father. I pray that I will do them in earnest for His glory. Summer is over, but I pray it is the start of a fresh season of worship and warmth with the Father. 

Caught On Video

Macayla had five seizures over the period of about four hours yesterday evening. I was able to catch the first one on video and as I was uploading it to my computer to email it, she had another. We gave her Diastat to stop them, but it did not work. She had three more over the next three hours and never once calmed down. It took a while to get a hold of a doctor, but they said we could repeat the Diastat three hours after the first dose. The second dose seemed to work and she slept through the night. 

Now, I have a little over a minute of Macayla's seizure on video and was able to focus in on some traits that may help the neurologist see more of what is going on. But now it won't go through on email because the server at the hospital is not letting it go through. Computers hate me! It's not that big of a file, yet the server won't cooperate. But we'll get it figured out and the good thing is that the seizures could not hide from the camera. 

Illusive Video

Macayla and Jacob did well over the last couple of days as Jennifer and I were away. They stayed with Jennifer's parents while we went to Charleston for a wedding and to celebrate our own 10 year anniversary! Charleston is where we met and that means it is a town rich in mushy, ooey-gooey memories for us. It was a great getaway and we are thrilled that the kids did so well. They always do for grandparents. Of course, Macayla had a grand mal a few hours after we got home, but it was shorter than the others and she kept her oxygen levels up better than usual. I didn't even have time to get my video camera out. 

We want to catch these on video so the neurologist can see it since she will never do one on an EEG or in front of him. Last night, I ran and got the camera and as soon as I walked into the room her seizure was over. So, I put the camera on a tripod in her room and pointed it at her in the bed. I expected that within 45 minutes to 2 hours, she would have another, but no! She went to sleep and didn't wake up until this morning. I think a camera is the best anticonvulsant we could have our hands on right now. She simply does not have seizures in front of a camera!! I plan to keep the camera on her all day today in the ready position. It would be surprising if she did not have another one today since the pattern has been to have multiple seizures over the course of a couple of days. Hopefully, we can catch the seizure on video if she has any.

Two Weeks Again

Macayla had two seizures last night which puts her exactly two weeks since her last ones. She seems to be on a two week cycle with these. But the good news is that the pulse/oximeter alerted us to them. The first one came while I was in the kitchen and I heard the alarm. She was at 47% oxygen when I got to her. The seizure lasted 1 1/2 minutes to 2 minutes. The second one started, but her oxygen and heart rate were fine. The oximeter did not alarm until about a minute into the seizure when her oxygen levels dropped. We got the seizures under control with diastat and she has slept all night. The good news is that the oximeter did alert us and that gives us peace of mind. It also helped while we suctioned her because we could see her oxygen levels jump as her airway was becoming clear. The two week cycle is what is most puzzling to me. 

The Beach

We were blessed to be able to go to Hilton Head this past week with my family and spend some time playing. We played hard and are worn out from it. Jacob did great playing with his cousins and aunts and uncles. Macayla had fun in the water and sand. We were able to have nursing coverage for three days while we were down there and that really helped make Macayla's stay more comfortable and fun. It made it possible for one of us to stay down on the beach while the other took Macayla back to the house. Jennifer and I got to go on a breakfast date and we also got to spend some time with Jacob and the extended family. That is difficult to do without the extra hands. Macayla got to go for a bike ride on a special needs bike trailer and we had a beach wheelchair for the week (courtesy of Family Connection) to get her out on the beach. The adults made fools of themselves singing karaoke long into the night on the karaoke machine and even Jacob and some of the kids got into it. The older kids liked the karaoke best when mixed with helium from the helium balloons. With nursing there, I was even able to go fishing and caught two baby sharks and a sting ray. Unfortunately, none of us caught anything worth keeping, but it was still fun. Jacob got to go on several bike rides with us and his cousins. It was a great trip and we are so thankful and blessed that we got to go.

EEG

Macayla had a 24-hour EEG this week at the hospital. She had three seizures Sunday, three seizures Monday, and none on Tuesday or Wednesday while she was on the EEG. That's the way it usually works out. But it probably means that she is having "storms" of seizures and not any consistent epileptic activity. I say not consistent, but she has always started her "storms" on Sundays. We have increased her meds again and hope that with the right increases we can keep these to a minimum. But we have to be prepared for the fact that this could just be part of the next phase and that grand mals are part of our lives now.

We got a pulse oximeter to monitor her heart rate and oxygen levels. Hopefully, it will alert us to a seizure if she stops breathing. My understanding from our pediatrician is that when the lips turn blue, the blood oxygen level is in the mid 70% range. We have set the oximeter to alert us if she falls below 85%. We had a apnea monitor, but it did not alarm at all during a seizure because it detects a lack of movement to alarm that breathing has stopped. During a seizure, Macayla moves even if she is not breathing. So, it didn't work. We hope the pulse/ox will work better.

Virtual Toy Drive

Macayla has spent quite a bit of time in the Greenville Children's Hospital over the last couple of years for surgeries and testing. We have met families that spend even more time than we do up there and the Children's Hospital becomes like a second home for many families. The hospital makes a great effort to make the kids' stay as comfortable and fun as possible with activities, games, toys, movies and equipment. But it is not just about entertainment. It provides important pieces of equipment for therapy and special needs as well. Check out the Virtual Toy Drive and see if you feel led to help out. There are almost endless options for the way a person can donate to the cause; either by dollar amount or item type or both. It has been a great benefit to many families to have access to the books, school supplies, movies, games, therapy equipment, and many other items to make the Children's Hospital more hospitable.

Something About Sundays

There is something about Sundays and grand mal seizures. Macayla has gone three weeks since her last seizures (which started on a Sunday afternoon). Two weeks prior to that, Macayla had grand mals on a Sunday afternoon. Yesterday (Sunday afternoon) she had three more grand mals. This was right as I was telling my sister in California that Macayla had gone three weeks without any seizures. The longest one lasted over four minutes. She threw up, but she breathed through them. The interesting part is that her apnea monitor never alarmed. It registered that she had a normal heart and breathing rate. I was hoping the monitor would be a good way to alert us to a seizure. We may need to use a pulse/ox monitor to alarm when her oxygen level drops. She breathed, but the breathing was very shallow and she turned blue/gray during the seizures. Her oxygen level had to be down. We will have an EEG this week, but it is most likely that it will come back clear. Hopefully, we can at least pick up on spikes or something that might give the doctor some sort of hint as to where the seizures may be starting. Maybe then we can adjust to a medicine that can target the seizures a little more. But this may be part of the disease at this point. There may be nothing we can do about it and we may just have to live with the fact that she will have grand mals from time to time regardless of medication.

Kids are Angels for Grandparents

Jennifer and I had the opportunity to take Jacob down to Hilton Head for a couple of days and let Macayla stay with Jennifer's parents. Jennifer's cousin was at the beach for a week and invited us to come down for a few days. However, I was a bit reserved about going, because it was on the two week mark since Macayla's last grand mal seizures. The last bouts she had with seizures were exactly two weeks apart. But we went and Jacob had a blast with his cousins who are similar ages. Meanwhile, Macayla was the perfect little child for her grandparents while we were gone. No vomiting. No seizures. No choking. Just perfect. We are thankful for that, but it wasn't long after we walked in the door from the beach that Macayla choked and had to be suctioned. It seems that kids act out for their parents but never do around grandparents. This is why most grandparents usually think that the parents exaggerate how much the kids act up. It was a relief that Macayla has made it more than two weeks without a seizure. We will be doing a 24-hour EEG soon to see if we can catch any seizure activity. Jacob had a such a good time at the beach and did not want to leave. None of us did. I wouldn't mind being called by God to serve a church on Hilton Head, but I'm not holding my breath. 

Little Stinker!

Sunday evening, Macayla had two more grand mal seizures. That's two weeks to the day since the last ones. One lasted about 30 seconds in the car. The second was an hour and half later and lasted 2 minutes. We gave her diastat and she slept until 3 a.m. She was nauseated and a bit agitated. We gave her medicine to combat the nausea and she slept for a little while longer. Monday morning, just before 9 a.m. she had another grand mal that was over 3 minutes. She got more Diastat. Overall she did much better through these and breathed better through them. Therefore, I did better. But the Diastat took longer to affect her that time and she only slept for two hours. After the seizures on Sunday evening, we noticed that Macayla's heart rate was very irregular. It was so irregular that it was difficult to even count. It stayed irregular through the night and Monday morning. We decided to go in for an EEG at the neurologist's office and while we were there we could walk over to cardiology and do an EKG. This was all scheduled for 3 p.m. Monday. On the way over to Greenville, Macayla became more alert and laughed. When we pulled into the parking lot, I listened to her heart and it was beating completely normal! She was acting completely normal. The EEG and EKG were completely normal! Normally this is a good thing, but in our situation, we actually want her to be abnormal during an EEG and EKG so that we can determine what is going on. The little stinker would not show off for the doctors! It is good that she recovered, don't get me wrong, but we wanted to catch these grand mals on an EEG and we wanted to do the EKG while her heart was acting strange so that we could know what we are dealing with. For now she is very clear and laughing a lot. As a matter of fact, she didn't even sleep last night. She laughed every time we came in to check on her. She had a great old time watching movies all night and laughing at her sleepy parents trying to get her sleepy. Little stinker!!

What Not To Do!

When transferring someone from one bed to another and they have a feeding tube with the extension set still attached, it is always best to ensure that the extension set is not caught on anything. The extension set is the 12 or 24 inch tube that connects to Macayla's button on her feeding tube. It got caught between me and the bed rail as I lowered her in the bed this morning. I had no idea until I heard a strange gurgling pop! I looked down and saw her shirt getting wetter and wetter and then noticed her extension set and Mic-Key feeding tube hanging free from the bed rail. I had accidentally yanked her Mic-Key out of her stomach! The whole point of us going to the Mic-Key was because it has a balloon that can be deflated for removal and this causes less pain and damage than feeding tube systems like Genie and Bard Buttons that have to be yanked out. So, in carelessness, I yanked Macayla's Mic-Key out of her. She handled it much better than I did. I felt so bad that I did it. It was one of those moments of panic where I was holding her whole tube in one hand and trying to plug the hole in her stomach with the other and asking, "What now?!" Once I regained my presence of mind, I called out to Jennifer who saved the day. Good thing I kept it together and didn't loose control of the situation, huh? 

The good thing was that it was time to change out her tube and we had a replacement at home. So we put the new one in and it is cleaner and a better size to fit the thickness of her stoma and abdomen wall. It certainly has not been a dull 48 hours. See the next post.

Camp New Hope

We had a great vacation at Camp New Hope last week. As mentioned in the previous post, Macayla laughed a bunch. Randy Brown is the director of the camp and she goes above and beyond to make sure everyone is comfortable and has what they need. We had planned on taking Jacob's fishing rods one of which is a Spiderman one. Jacob was very excited about it, but Dad forgot to pack it. So Randy ran to Wal-Mart and picked one up for the camp so Jacob could use it while he was there. One of the owners of the camp, Will Adkins, flew in on his helicopter and we got to meet him and one of his associates from the company. They brought a dog named Swiper which Macayla loved along with Randy's dog, Muggsy. The dogs got her laughing more than anything and it was contagious. Macayla's laughter quickly spread to all of the adults. Jacob enjoyed watching the helicopter take off and fly out of the valley. We got it on video so he could show his friends. The camp did some neat things to commemorate our trip. They had some birdhouses donated and they wrote Macayla's name and the date we were there on the bottom. Then we hung the birdhouse on a fence post on the mountain. Randy hopes to get a picture of it with birds in it and send it to us. Another amazing thing they did was they started putting trails in on the mountain and they were in the process of naming the trails like streets. The main trail at the bottom of the mountain was called Macayla Mtn. It was engraved on a wooden street sign and we got to bring the sign home with us. Each week that trail will be named after the child who is there. We met the nice couple who makes and donates the signs to the camp and they were a treat. 

One of the most powerful additions to the camp is the Chapel of Hope. What was a tool shed last year is now a small chapel for families to use. It has pews in it, a stain glass window, a kneeling rail for prayer, and some beautiful portraits in it from Stephen Sawyer. A young man named Joshua is a new addition to the Camp New Hope family and he was the creative hands behind the Chapel of Hope. His carpentry made the wood floors and beautiful wood ceilings possible. It reminded me of the story in the Old Testament where God gifted men like Bezalel and Oholiab to build the Tabernacle for the Israelites. Joshua's gift for carpentry among other skills were a blessing to us. The chapel is truly a sanctuary and I found it to be a great place of quiet and peace, not to mention a great place to work on the upcoming sermon I had. We are so thankful to the Adkins brothers and Randy for making a vision a reality. We are thankful that God brought Joshua into their midst and we are praying that all of the families that come there will experience the peace, joy, faith, hope, comfort, and love we have. It is truly a harbor for stormy lives. 

Go!

Last Sunday Macayla had three grand mal seizures. She has never had grand mals before and it took a while for us to figure out what was going on. However, she stopped breathing during the seizures, the longest of which lasted about 45 seconds. She bypassed turning blue and turned gray. She turned gray and her eyes glazed and she looked like she was slipping away. I tried suctioning her to get her to breathe, but nothing seemed to work. It was a helpless feeling. It was a moment when you realize you are watching your child die and there is nothing you can do to stop it. Fortunately, Jennifer got home in time for the third attack and she recognized it as a seizure so we gave Macayla Diastat and it stopped them. Macayla's immobility made it hard to recognize it as a seizure and the first indication I had of a problem was when Macayla threw up. I thought she stopped breathing because she was choking on vomit, but it was the seizure that stopped her breathing. After getting the Diastat (a rectal valium medication) she slept for 13 hours without another problem.

The whole event shook me up. We were scheduled to leave the next day on vacation at Camp New Hope, but I truly wanted to stay at home. The thought of traveling 4 1/2 hours to a remote location seemed overwhelming. But Jennifer's wisdom, faith and strength has a way of straightening me out at times. She observed that we did all the intervention we could have done and it would not matter if we were at home or in the mountains if it happened again. She reminded me that Macayla would miss out on a great trip that week if we did not go. More importantly, we had decided the day we got the diagnosis of Battens that we could either curl up and die or we could live and we chose to live. Macayla's life is not the way we pictured it, but it is the life she has and we must live it. We are so glad we went to Camp New Hope this week. Macayla had a great time. She lit up as soon as we put her on the Bobcat (an open air mini-truck that has four-wheel drive; picture a golf cart on steroids). She loved the vibration and the wind in her face and the bumps as we road around the mountain. She got to go skinny dipping in the river one day and squealed with delight. The next day we put her in the river with clothes on and she loved it and laughed. Laughter was the word of the week. Macayla got so tickled on Thursday when she sat on the floor with a couple of dogs that happened to be there. Muggsy was a little Pug that licked Macayla on the face and Macayla started laughing uncontrollably. She got so tickled that everything we did for the next three hours brought laughter. She wore herself out laughing and playing in the water and almost dosed off riding in the Bobcat afterward. Jennifer and I remembered this week that the last word Macayla ever spoke was, "Go!" She used it in therapy to indicate she was ready to go down a slide or start an activity. Even when she could no longer make the "o" sound

she would just make the rough "g" sound to mean "Go!" After she lost that ability, she would hit a switch that activated a voice recording of the word "Go!" Jennifer observed how appropriate it was that Macayla's last word was "Go!" That is a great reminder that we must keep going. We cannot curl up and hide. We cannot stop living life just because it turned out shorter than we expected. Whatever life any of us have must be lived. If we had stayed home this week, we would have missed out on some of the most precious moments of life we have had with Macayla. It is scary at times when Macayla's condition progresses to a place we've never been before. It can feel overwhelming to get everything together and travel. We cannot control the disease. We cannot control all of our circumstances. But we can decide how we will respond to those circumstances. Macayla has reminded me that life is experienced when we get up and "Go!" 

Rapturous Joy

Macayla and Jacob had a great birthday party. Hotdogs, cake, chips, beans, candy topped the health menu. There was some fruit which hit the spot on a hot day. Macayla stayed awake the whole time and even laughed some. Last year she slept through her birthday party.

Lately, Macayla has been laughing and smiling a lot. Yesterday she was so tickled for some unknown reason that she couldn't stop laughing. She started laughing so hard she couldn't breath and tears formed. Whatever it was that made her laugh, I'm glad she had it. Her laughter is contagious and when it starts, it gets everyone else laughing too. That rapturous joy is but a taste of what is to come for Macayla when she is with Christ. I often wonder what Macayla perceives. Medically speaking, one would think she perceives less than the rest of us, but there are times I get the feeling she perceives that which we cannot. I would love to see what she sees sometimes. I would love to know what gets her laughing uncontrollably. Some days, I make it my objective to make her laugh, but it doesn't always work. My antics probably generate thoughts in Macayla that would be left unknown! But I look forward to the day that she and I can share that rapturous joy in heaven. We will finally have the full clarity of our Lord's work in our lives and have full perception of joy and love. It will be the best party ever.

Happy Birthday

Today, Macayla turns 7 years old. She is 58 lbs and 52 inches tall, as we discovered at a recent nutrition visit. We plan on having a party next week to celebrate her birthday and Jacob's birthday at the same time. Jacob said he wanted a "super hero" party like he did last year and he thought Macayla wanted a "Dora" party. If she could talk, I wonder if she would agree. We sang "Happy Birthday" to her this morning, but she did not seem overly joyed by it. Who can blame her considering who was doing the singing? I am amazed at how time seems to slip away. It has been an amazing seven years. In one respect it has flown by, and in another respect Macayla's birth seems like eons ago. That was a day when Macayla passed through a birth canal and her daddy passed out! I guess a lot has happened since then. She's a big girl. She's gorgeous. We are so blessed by her and we celebrate the beautiful life God has given us in Macayla. 

Unpredictable Patterns

Where is God in the midst of suffering? Where is God in the midst of the chaos we can find ourselves in? Evil exists in this world, so how can a good and loving God allow it to happen?

It's hard to read the creation story in Genesis without the Darwin/evolution debate coming to mind. But it is well worth setting that debate in the background instead of the forefront since the creation story communicates so much more. Often people want to know if the world was created in six twenty-four hour days or not, but this misses the point. As J.P. Moreland observed, an all-powerful God could have created the universe in an immeasurable instant. The question should be, "Why did it take 6 days?" God purposefully uses a process over a given amount of time. It was intentional and done with care. A casual reading of Genesis 1 gives the reader a feeling that a literary pattern is being used each day of creation. God said "Let there be..." and "it was so." God saw that it was good. God separates. God labels. There was evening, there was morning, day... The casual reader will pick up on this pattern. However, a closer study shows that the pattern is not exactly a pattern. Patterns are predictable since they repeat, but in Genesis 1 the repetition of God's activity changes order and varies each day. In other words, it feels like a pattern but it is unpredictable from our perspective. Through this unpredictable pattern, God brings order to the chaos using His words. Each successive day sets foundations and connections for following days. When it is all done, God sees what He has made and says it is "very good." It was perfect. 

Since then, things changed. The story of Adam and Eve shows us that humanity made a choice to disobey God. The ability to choose had to exist in order for us to understand love, for love is only love when it can be chosen or denied. Unfortunately, we denied love and that brought a cosmic change in creation and us. That change brought suffering and death to the world. When faced with suffering and even our own bad choices, we may want to know where God is. Where is God when we suffer due to disease? Where is He in the midst of our chaos? He is right there. Our sin and suffering will not have the last word if we trust what God has done since Adam and Eve. Christ now offers re-creation and likewise utilizes a purposeful process over time. He speaks into our chaos with His Word, brings light, separates, labels, commands and brings order. Anytime I think I have learned a pattern of how God works in my life, He seems to change things up a bit and His patterns are unpredictable. He will not be put in a box. Christ's re-creation process is not always comfortable as he separates me from my bad habits and sins. It is not comfortable when Christ judges things in my life and shows me what needs to change. But there are times of discovery as I see how His activity on previous days have set the foundations and connections for today. He even uses the suffering I experience today to prepare me for tomorrow. It is a process over time and it is not always easy or the path I would have chosen. But my hope is that at the end, when I look back over all that God has done during the days of my life, I believe it will be "very good." For He works all things together for good for those who love Him and are called according to His purpose and rest will be found in Christ.

Eyesight Surpassing Expectations

Macayla went for a check-up with the eye doctor. She is showing some deterioration in the optic nerve which is new for the doctor to report. Prior check-ups have merely shown slight changes and the optic never has always looked good. However, the doctor did state that he is impressed with the fact that Macayla's sight is doing as well as it is. She responds to light and can look at us at times when we talk to her. She seems to have difficulty focusing on objects, but I would guess she sees shapes and colors in good light. She definitely is drawn toward light sources. Overall, Macayla's function has surpassed most expectations. She is tall and has good weight. She smiles and laughs at things appropriately from time to time letting us know that she still has moments of cognitive processing of her surroundings. She is holding steady with her stomach and tube right now as well. Minimal bleeding and granulation and she tolerates all of her calories for now. I also have to say that she is a gorgeous little girl (which surpasses most expectations one should have for a child with my genetics)!

She Must Be Hungry

Sorry it has been awhile since our last update. We have had a lot on our plate lately. Macayla is doing well for the most part. She has difficulty tolerating her feedings later in the day but we still get her calories on board. Although, I am beginning to think she wants more from her feeding experience. Lately, she cannot stop putting her left hand up to her mouth and rubbing her knuckles across her teeth. Unfortunately, it has cut her knuckle open and she keeps it open. We have to restrain her left hand to keep it out of her mouth. She doesn't seem to have much interest in the right hand. Maybe it doesn't taste as good. Anyway, we seem to get close to having her knuckle healed up and she sneaks it in while we are bathing her or changing her. We have walked in at times and found that she has worked free from the restraint and there is blood all over her face and hand. Not fun. Maybe she just wants a little more red meat in her diet these days!

Overall, she is doing well. She still laughs at appropriate moments, like when Jacob gets in trouble. She has been more rigid lately but seems to relax after a warm bath and massage. She can still see colors and light and even looks right at you if your within 15 inches of her face. Some days she will lock in on the television several feet away. We are indeed blessed by how well she is doing. Her breathing and major systems are strong and steady and she has maintained good weight. But I can't blame her for wanting a little more flavor with her food.

Not Listening In Church

In some political joking lately, comic Stephen Cobert stated that Obama couldn't have known what his preacher said because "we all know no one pays attention in church!" This is humorous simply because there is some truth to it. As I have read some of the accounts of Jesus after he rose from the tomb, it was apparent that his disciples had not really paid attention to all Jesus had told them earlier. I find it interesting that the disciples did not even recognize Jesus in their first encounters with the risen Lord. To Mary Magdalen, he looked like a gardener. To the the disciples on their way to Emmaus, he was simply a traveler. To Peter and others who were fishing in a boat, he was simply a spectator on the shore. Unfortunately, many of us have mistaken Jesus for someone or something other than what he truly is.

I have had some conversations with some folks lately that reject Christianity. Our discussions revealed they have vast misunderstandings of Christianity and Christ. They appealed to misinformed historical perspectives and presuppositions about God that were more comfortable than true. They worked from feeling and experience and shunned thought and beliefs. Their descriptions of Christianity was based on the abuses of those who call themselves Christians and not based on Christ. Unfortunately, they had not paid attention to the truth, but only to bad experiences or cliches. Like the first disciples immediately after the resurrection, it did not seem plausible to them. But thank God, the disciples figured out that the most sensational news possible is the truth. Thank God that they passed on this Good News and it spread throughout the world. 

I pray that we will not let our misunderstandings of Christ guide our lives this year. Mary recognized the gardener to be Christ when He spoke her name. The Emmaus-bound disciples recognized the traveler to be Christ when He broke bread with them. Peter recognized the spectator on the shore to be Christ when He told them where the fish were. If he had only been a gardener, traveler, or spectator and not Christ, then Jesus would have been a footnote in history at best. Instead, he is who he said he is; the risen Lord. When the disciples had a personal encounter with him, it changed everything. I pray that we all have that personal encounter with Christ to see past our misunderstandings to find the truth. The truth that it was Christ, not a moral code or religion, that died for our sins on a cross and rose from the dead. 

The Hope

We have had a difficult Easter week. Jennifer's grandmother died in a car accident on Tuesday. The Easter holiday will be difficult without Nanny as she always wanted her family to congregate around her dinner table at Easter after worship. This has been a struggle for Jacob as well and I will update his page soon. However, with Easter comes that ultimate truth and hope that comes from nowhere else. Nanny followed and trusted Christ. She knew that hope and reflected it to those who knew her. Good Friday marks the day that Christ removed the sting of sin and death forever as well as commemorates his own, abbreviated funeral. The great news is that a funeral is not the end of the story. Christ rose again on that first Easter Sunday and it is by that same power that Nanny and those of us who know Christ are transformed. It is by that power we know a funeral is not the end of our story either. We grieve, no doubt, but we grieve with hope, faith, and love. We stand at a funeral and our Lord stands with us weeping as he did at Lazarus' funeral. We stand at an empty tomb and discover the story and our very life has just begun. I hope all who read this know the Hope that Nanny did. For her, that Hope is now fulfilled and realized. We thank God that we were able to see His reflection in her life. We thank God that her funeral is not the end of her story. We thank God that it is He, and not death, that has the final word. 

Uncommon Needs

I have created another blog called Uncommon Needs to share some links and helpful hints that people have shared with us for the care of a special needs child. The smoaksignal blog is a bit too organic in format to make this type of information easy to find and hopefully this new blog will be set up according to subject matter. The entries will still be from most recent to oldest, but at the top of the page is a listing of categories that will take you to entries dealing with just those subjects. I did not want to reinvent the wheel here so I will be adding links to forums and information sites we have found helpful. We welcome any input that would be helpful to families with special needs. It is in its beginning stages, so there is more work needed to make it helpful. 

Recoil

We went to a funeral home yesterday to start some initial planning for a major step in Macayla’s journey. I will try to update the Uncommon Needs blog with the more technical information as it becomes available as part of the “End of Life” entries. It is so difficult to plan a funeral for a loved one and it is paralyzing for a parent to plan the funeral of a child. However, Macayla’s funeral is one of her needs. It is a need just as much as her wheelchair and medications. It is as much of a need as the quality time and love we share with her now. It is at once a need based on logistics and a need based on love. We struggled with taking the actual step of going to the funeral home, but once we did we felt a bit of a weight lifted. Overall, it was a helpful experience, much to the credit of Mr. Derksen who graciously listened and guided our thought process.

Our discussion led to the subject of caskets it was a moment that I could feel myself shrinking from. Walking into a “showroom” (so to speak) of caskets and pondering that for your daughter is daunting and doleful. We have some ideas of how we want to proceed in that area, but the strangest part was knowing the emotions this stirred and yet we did not express any of them while standing in a room full of caskets. I began to wonder if something was wrong with me for being so stoic.

This morning, I experienced a prayer moment that shed some light on my state of mind. I realized that I have been recoiling from the emotions for quite awhile. It is as if I had placed my hand on a stove burner and jerked away. Anytime I sense the emotional response to our situation, I recoil from it so that I can function. I have apparently gotten very good at it too. During prayer this morning, I sensed Christ saying, “Let it out.” I was reminded of how he wept at Lazarus’ tomb. He was not stoic or even sanguine since he knew that Lazarus would live again (John 11). He wept along side the people at the funeral. So, this morning I let it out in a cathartic burst. Even in the midst of tears I wanted to pull away and recoil from the pain and loss death brings, but Jesus reminded me that He did not pull away. He reminded me of the grief and anguish He felt as He approached the cross. He did not recoil from the pain. He did not recoil from the anguish. He embraced it and because he did, sin and death are defeated. Because He did not recoil, Macayla’s funeral marks her step into the ultimate life. Because He did not recoil, we catch glimpses of that ultimate life now. Recoiling from the pain has caused me to miss the greater perspective of life.

Valentines

It is funny to watch these commercials on television for Valentines Day and the ideals of dating, romantic dinners, candles, intimacy, and ooy-gooy moments between men and women. Then there is reality. In our home, our Valentines consisted of combating Jacob’s 105.8 fever that resulted from the flu. We were cleaning up Macayla’s feeding tube site from cauterizing it the previous day with silver nitrate. We had bloody stomachs and yellow snot. Our romantic dinner (which was steak) was eaten quickly on a table half covered in paperwork and prescription medicines. Instead of candles, roses, and whispering sweet nothings, we had thermometers, Kleenex, and the honking of snot-filled nostrils. I have yet to see any marketing for Valentines that reflects this scenario. Companies like Kleenex, Therma Scan, and Motrin should explore marketing their products on higher concepts of love. Maybe it is in these scenarios that we begin to discover love more appropriately. It is easy to love in the ideal world of television fantasy where everyone is free of faults, flaws and trials. We live in a culture that claims true love is known only when it is a felt emotion. True love is known but not always a felt emotion. Emotions come and go, but knowledge remains. Maybe true love is discovered when we love in spite of its cost or benefit. Maybe true love is discovered in the faults, flaws and trials. I pray my knowledge of love grows this year because as I am typing there is a little nose that needs blowing, again. I honestly cannot claim that the emotion I have right now is ooy-gooy love. The only ooy-gooy I feel is in the tissue. So, I pray most of all that those around me know I love them with more than passing emotion.

Wheels!

Macayla has new wheels! She just got a new wheelchair made by Ormesa. It is company in Italy that seems to be making some good products. Her chair has been thought out for daily use. It actually has a sun visor and rain cover. These seem to be absent on other brands we have shopped. The rain cover is always on the chair if the visor is attached and it covers all of Macayla and the chair. There is also a thermal cover that zips up around Macayla to keep her warm. The chair looks similar to a big stroller and is much more comfortable than her other chair. We are still learning the best ways to use the chair, but overall it is a vast improvement over our last chair. 

Our other wheels (the van) is back from the car doctor. The ignition coil and coil wire was bad and had to be replaced. This is the part that is responsible for making all the spark plugs fire in the proper sequence. We came out of that procedure with a lot less damage than we anticipated. Still, I would like to see these presidential candidates promote a universal car care program! I'd love to only have to pay a copay when the cars are repaired.

Update

Macayla’s feeding tube has done better overall, but we are still experiencing granulation that never seems to stop. She still gets blood in her stomach from time to time but we have not seen the levels of blood that we did before December. She is still tolerating food well and even put on some needed weight. Our hope is that we will not end up where we were last summer. She just does not tolerate foreign objects in her tummy. Maybe that’s a good thing if she were ever to be a teenager. It might have prevented her from being big into body piercing! But I wish she could handle this one body piercing (her feeding tube) better.

Our van has decided to finally quit. It threatened to quit for several weeks now and it finally bit the dust this morning. We are waiting on the automotive MD’s assessment. It may require major surgery but hopefully it will be reasonable. I wish car insurance was like health insurance and all repairs and tune-ups could be covered just as our check-ups and surgeries are covered. I wonder if the presidential candidates would consider running on a platform of universal car-repair insurance coverage? Allstate and State Farm would probably hire a hit man to remove that candidate; lowest bid of course.

Jennifer is not quite as recovered, as we would like. She still feels discomfort and pressure that should be better by now. We are doing a couple of studies to see if all is as it should be and trying to discern how and when to go back to work. Soon time will be of the essence on these decisions.

Jesus Made Mud to Bring Light

Jacob was saying bedtime prayers recently. I asked him to think of something really neat about God to start off the prayer. He said, “God made…” At this point I’m expecting any one of a dozen possibilities from creation, like “God made the sun” or “God made me.” Instead, Jacob says, “God made mud.” He gets a giddy little grin on his face. Though technically true, I knew his motivation was to be silly so I tried to get him to think of something else. He sticks with the mud. Then the Holy Spirit reminded me. I said, “Jacob, Jesus made mud one time and wiped it on a man’s eyes.” Jacob naturally asked why Jesus would do such a thing. We talked about the story from John 9 about a man born blind that Jesus healed. Jesus spit in the dirt, made mud, and put it on the man’s eyes. When the man washed it off, he could see. Jacob thought that it was a cool story, especially the part of Jesus spitting and making mud. Jacob wanted to try and make mud that way too.

The next morning, Jacob wanted to read from the Bible he received for Christmas. I did not have a planned text to read and we ended up on Psalm 27:1 “The LORD gives me light and saves me. Why should I fear anyone? The LORD is my place of safety, why should I be afraid?” (NIRV) Then I remembered our prayers from the night before and we turned to John 9. As we read the story, I was reminded that Jesus made a statement just before he made mud. He said, “While I am in the world, I am the Light of the world.” (9:5) Then Jesus made the mud and put it in the man’s eyes. The man could see for the first time. Jesus used mud to bring light. Why mud? This story starts off with a related question. When the disciples saw the blind man they asked if the man’s sins or the sins of his parent brought on the blindness. Jesus said neither. He said this man was born blind so that the works of God might be displayed in his life. Spit and dirt would be used to bring light into the blind man’s life. This man’s blindness would be used to demonstrate that Jesus is the Light of the world. Jacob and I learned that God is light and that light is not only something we can see but also it is the light by which we see everything else. Psalm 27 and John 9 remind us that in the light we are saved from fear. It is hard to understand why we have to go through the mud to get there sometimes, but in a fallen world there is quite a bit of mud. Battens disease is one example of that mud, but when it is washed away we will see clearly, for the first time. When God allows or even places any mud in our lives, it will be so we can wash it away and say as the blind man, “one thing I do know, that though I was blind, now I see.” In that Light, there is love that casts out all fear and brings salvation.