Life

I had a birthday recently. On that day, we met with our pediatrician, geneticist, and a pediatric intensive care doctor to discuss what to do on the day of Macayla’s death. This may sound morbid or strange, and that would be because it is morbid and strange! The discussion itself is not the morbid and strange part, but it is morbid that we even have to have that discussion. It is strange that on the day my family was thinking about the day I was born, we had to begin thinking about the day Macayla would die. But, it is a necessary and healthy thing to do for our family. Macayla’s disease will kill her. In her case, she may not come through a bout of pneumonia or a car wreck like she would have if she were not affected by Battens disease. The most likely cause of death will be from a pulmonary arrest as the airway becomes floppy because her muscles around her airway lose tone. It can be brought on by a major seizure as well. Nevertheless, unless she is healed on this side of heaven, she will die. But the same is true for us all. The decision we have to make for Macayla is to what degree we would intervene when her body begins to fail. If she were to have pulmonary arrest, would we intubate (insert a tube through the mouth to the lungs to help air flow)? Would we place a trach tube in her neck? Once we start those interventions, how long will we continue them? The outcome of our meeting with some special and caring doctors was that we are more educated on when and how those interventions are done and we are forming our decision now. I would like to encourage all families to think through those decisions now, even if you are healthy. It prepares you and your loved ones to respond to tragedy. It doesn’t make the tragedy any easier, but it at least prepares us on some levels. It also puts decisions in place so that if something happened to Jennifer and me, her parents would have decisions made for them as they take over Macayla’s care. The doctors told us that if we chose not to intervene with intubation or a tracheotomy that it will be difficult to go through those last moments with Macayla as she struggles for air. If we chose to intervene fully for as long as possible, that it makes those decisions for us, but it won’t change the disease or the outcome. It will only delay it. We’ve already intervened in that we placed a feeding tube to provide her nutrition, but this pales in comparison to the other interventions we must consider.
We know that Macayla will be healed. It may be here with us or it may be with Christ in heaven, but she will be healed. There are times when technology is a wonderful blessing that saves lives and provides quality of life for many, but I don’t believe that we can always hold to the idea that we must use technology to delay death. We may have the means to do so, but is that why we should do it? There is one being in this universe that has the means to keep someone alive. God could not only keep Macayla alive, but He could completely reverse the disease itself. It makes me realize that God has the means to prevent death, but He chooses not to very often…or does He? God is not evil and neither is a family that may decide in a situation like ours to not intervene. Likewise, God can heal and it is good for a family if they decide to do full interventions. At the heart of this decision is understanding reality. If we know that reality involves much more than what we can see with our eyes and that life is more than breathing oxygen and pumping blood, then we are more equipped to make decisions that promote life. Life is also in a realm that we cannot see with our eyes. This is not to say that we shouldn’t treat people like Macayla and their symptoms. This is not to promote assisted suicide. But we must be aware that Macayla’s life does not end with her last heartbeat. It will in fact take a giant leap forward. God may call us to intervene more than we would think for a special reason, or He may call us to allow the disease to take its natural course. Either way, I fall back on the promise that He made to me before our diagnosis: “Macayla will die, but I’ve got her no matter what.”

Keepin' On

Macayla has been busy lately. The most exciting thing today was that she once again demonstrated she can communicate. At therapy she used the switch devices to communicate that she wanted to go down the slide by pushing the button that said “go!” It was exciting and everyone in the room was cheering her on. What a blessing! This past weekend, we went to the mountains in north Georgia for a wedding. It was a beautiful place and the kids loved it. We stayed in a house that overlooked a river and Jennifer and Macayla took a nap out on the porch with sound of the river below serenading them to sleep. Jacob and I explored the slope above the river and went climbing and exploring. A couple of weeks ago, Macayla participated in the Special Olympics. She did a beanbag toss (as in the small beanbags, not the kind you sit in. She’s strong, but not that strong.) She did a ball toss and a relay race. It was such a blessing for me to see all of the families in Anderson that have special needs and abilities. We enjoyed it and I would suggest it to anyone to go and be apart of it. These kids and families impact others in unique ways. Macayla is full of surprises and we are so thankful for her and all of the people who pray for her and us. She was born for the glory of God.

Big Macs for Mac

Big Macs for Macayla! No, not the double-decker cheese burger from McDonalds. It’s a big, green button. Macayla’s therapist has accomplished something that none of us have been able to do. She has taught Macayla a new skill! We have been frustrated and sad, because Macayla has not been able to learn new skills but only able to lose skills. We tried to teach her sign language and she only picked up one sign (“more”) and that was over a year ago. She cannot do that sign anymore. We have tried using flash cards to teach her a new system of making choices. This would give her the option of choosing a card with a picture on it that represented something she wanted. For instance, she would be able to choose between a card with a picture of the TV on it and a card with a picture of a slide on it. She only mildly warmed up to that system and that was short-lived. We tried using Big Macs which are large, round buttons, usually brightly colored, that are designed for kids with speech issues and coordination issues. These are helpful because the whole top of the device is the button and this makes it easier for the children to activate it. They can contain recorded messages so that when the button is pushed the message is heard. They can also be made to activate just about any electrical device such as toys, TV, fans, music, etc. Macayla has never gotten into them until last week. This is the switch device I referred to in the last entry. Macayla went to therapy this week and she immediately recognized the Big Mac (which in this case was a smaller, yellow version) and tried to activate it to go down the slide. In other words, Macayla did not have to be retrained to activate the button to go down the slide. She learned a new cause-and-effect skill!! As with saying a sound for the word “go”, this may be hard for some to appreciate, but it is huge. Macayla learned a new system to communicate and used it. That’s exciting!! It may only last today, but we will take it. Now, we look to getting some Big Macs for Mac!

Go!

For the last two or three weeks, we have noticed Macayla making a sound that resembled the word “go.” Two people claimed to have heard her say it before I heard it. I honestly thought they were mistaken because Macayla hasn’t said a word since before Christmas. This may be hard for some people appreciate. But something as small as being able to say the word “go” can be huge in the life of someone like Macayla. Jennifer and I know Macayla better than anyone, and often we are not sure what Macayla may want to communicate. At therapy, the therapist thought she was saying it. They were making her work by going up some steps to a platform and then go off the other end of the platform down a slide. Over a year ago when Macayla would go down a slide, the therapist would say “ready, set...” and wait for Macayla to say “go” before she could slide. So, we tried it this time and she reacted by moving both arms and making a “ggggggghhh” sound. With the use of a switch device, the therapist recorded the word “go” so that every time Macayla would hit the button, it would say “Go!” Before therapy was over this week, 100% of the time Macayla went up to the slide she would make her “ggggggghhh” sound and she looked at the button of the device and tried to hit it with her hands. Her movements are disorganized so it was hard to hit, but she did it. The fact that she was looking at it and making the sound at the appropriate moment told us she was communicating. This carried over and when I was in the car with her this week, I asked her if she wanted to go to the pet store and see the cats and she waved he arms and said “gggggggghhhhh.” It’s exciting to see her communicate after thinking that verbal communication was mostly lost or at best unintentional. We may have this for a short time, but we’ll take it. Go, Macayla!

Behind the Scenes

It’s Good Friday. It’s hard to consider such a brutal event in history as “good.” How can anything we suffer or that others suffer be called “good”? I certainly cannot call Battens disease “good.” I can’t watch Macayla suffer what she does and call it “Good Progressive-Degenerative Brain Disorder.” Crucifixion was such a brutal practice but it was common in ancient Rome. As far as the people of that day, Jesus’ crucifixion was a common sight. It just “happened” to coincide with the Passover holiday and so there were more spectators than normal in Jerusalem that week. Other than that, it was just another execution. But, we get a look behind the scenes. It was indeed a unique moment in human history that not only changed the world, but also changed eternity for many people. As far as the soldiers who nailed Jesus, he was just another prisoner. But after those six hours that Friday, some of those soldiers realized that Jesus was no ordinary prisoner. They got a glimpse behind the scenes as well. God the Father sent God the Son to put on skin and bones to walk among us. He lived and dwelt among the people. God did not want to play hide and seek. He got down on our level. He lived a life free of sin even though he was tempted in every way we are and more. He had a human will and a divine will. But his human will always followed the divine will. Then he was killed on a cross for our sins. He had no sins to be punished for but we have plenty to be punished for. It is strange indeed. Our sin has separated us from God, but God wouldn’t give up on us. He rushed down to our level and became a man. Then being a man, he took the punishment we deserve, but being God he was able to pay the debt our sin put us in. Being God he was able to overcome death and sin for us. But it took one Friday in history to do so.
Good Friday? How can it be? For six hours or so on that Friday, God the Father watched his only begotten Son suffer and die. My Father in heaven knows all to well what it means to watch a child suffer. My Father in heaven knows all to well what it is like to watch a child die. As we watch our child suffer and die slowly, we know that God is not some distant and uncaring being, but He knows our pain and more. He cries with us. Behind the scenes of the crucifixion, there was a Father in heaven heartbroken, but there was victory as well. Victory over the sin and death that separated this Father’s other adopted children (us) from him. In Macayla’s life there are parents, family and friends heartbroken over her condition. But behind the scenes of Macayla’s life, there is an amazing plan with unfathomable results that will impact so many people and change many lives. We don’t know how far-reaching it will be, but slowly we are getting a glimpse behind the scenes, a glimpse at an amazing God who doesn’t allow suffering to go to waste and be meaningless. Behind the scenes, we are slowly learning how “Good” can become an adjective for the tragedy we see in Macayla’s life. Behind the scenes, we are learning how a Friday approximately 2000 years ago can be considered Good Friday.

Jacob - The Flooring Crew Prayer Warrior!

While our house was upside down with the flooring work, we were sleeping at Jennifer's parents house. Saturday night, Jennifer's mom said she was putting Jacob down for bed and said prayers. She said she said the "lay me down to sleep" prayer and then Jacob said, "BB, I want to pray for the people working on the floors in my house." He's a little prayer warrior for the flooring crew! No wonder it all came together so well.

By Jim's Blisters, We Are Floored!

The hours were long. The progress seemed slow. The saw dust, the blisters, and the splinters were abundant! We are grateful, excited, and awestruck that some friends from Greenville have helped us put in a hardwood floor. We had been discussing flooring options because of Macayla’s wheelchair and soon she will have a patient lift and a bed with casters. The carpet in our house would hinder those items from moving. So, we knew we needed to do something, but we were not in the position to do it quite yet. Some friends of ours knew of our need and got their church small group from Catalyst Church in Greenville to help out along with other friends, Sarah & Eric, who Jennifer used to work with. They gave of their time, talent, and treasure to do this for us. It was an amazing surprise and blessing. We got the furniture and carpet out of the way with the help of our neighbor’s hand truck and two friends from Oakwood Baptist here in town. Then the flooring crew came in. With two hours of prep work on Friday, they were ready to start at 8 a.m. on Saturday. We didn’t finish until 10 p.m. that night but the floor and all the shoe mould were in place and even a few pieces of furniture were put back. It was hard work, but it came together in a single weekend. We are so thankful to Jennifer’s parents for taking care of the kids and giving us beds to sleep in while our house was a work zone. We are thankful for Mr. Jack and Mr. David for helping us pull carpet, staples and tack strips. Thank you, Eric and Sarah, Dr. and Mrs. Mabie, John and Shelley, Ken and Patty, Danny and Anne, & Jim and Lea Ann for the sweat, time, money, food and love. Thank you to my Mom for helping with cleaning up the aftermath. Thank you to my Dad for his pneumatic floor nailers that sped the process up. I know that Scripture declares that “No one has greater love than this – that one lays down his life for his friends.” We remember during this Easter season that Jesus laid His life down for us because "by His wounds we are healed." By His wounds and His work at the cross, we are transformed. I must say that great love was shown this weekend from some people who have been transformed by that cross. They may not have laid their lives down, but they certainly put them on hold for a day or two and gave out of what they have been given. By Jack & David’s time, by Dad’s nail guns, by Mom’s dust rag, by Danny’s supervision, by John’s organizing, by the Mabie's and Sarah & Eric’s support, by Kenny’s persistence, and by Jim’s blisters, we are floored!