Robbie has been a new person since he began taking a new medicine called Onfi about two months ago. This medication is specifically directed at the type of epilepsy Robbie has, called Lennox-Gastaut Syndrome. It is the most severe form of epilepsy with many, uncontrollable seizures every day. Not only has the Onfi reduced the number and severity of Robbie’s seizures, but it has made a HUGE difference in the quality of his life! Suddenly he is more awake and alert, he is enjoying his toys and music with a new vigor and he is attempting to do things he hasn’t done in years. You can just see a new joy in his face and a zest for life that we have not seen in over twelve years. The fog from the many drugs he has to take daily seems to have lifted, and with this new lease on life has come a new strength as he attempts more each day. His movements are quicker and more controlled and his legs have begun to regain some strength. He actually took six or seven steps in a row the other day (with Bob holding him up.) It had been years since he had done that!
Needless to say, we are amazed and overjoyed at this miracle the Lord has brought into our boy’s life! Seeing Robbie so excited and enthusiastic makes every day more fun for us all. We begin to wonder if there are some things we will be able to do now that we thought we had lost forever. Can we go out together now as a family? We’ve already been to a restaurant three times in the last six weeks—something we had only done once a year, if that often. Can we take him to church again? Would he even be able to get on a plane and fly someday??? New doors seem to be opening!
There is one little down-side to all this, however. With his new strength and confidence, Robbie is attempting to do things that he simply cannot do and he doesn’t understand that. For instance, it is more difficult for us to walk out of the room for a minute for a bathroom break, or to go out to the kitchen for a cup of coffee. We have to watch him like a hawk. If he sees a toy or pillow across the room that is out of his reach, he is going to try to stand up and go for it. Since he has no balance, he could fall face first like a log, possibly into a piece of furniture, and maim or even kill himself.
This was brought home to us in another area the other night. Stop for a moment and think what it would be like to have not had a morsel of food or a sip of beverage in your mouth for over twelve years. It is difficult to think about, isn’t it? That has been the case for Robbie since early 2001 when he went through a medical crisis and was on a ventilator for several weeks. When he came off the ventilator he could no longer swallow and had to have a feeding tube installed. Since then, his liquid food has gone directly through a g-tube into his stomach. Trying to swallow anything, even his own saliva sometimes, brings about choking and could cause aspiration—which leads to pneumonia and another hospital stay.
Robbie quickly lost the desire to try to eat anything by mouth. For many years he has been satisfied with simply holding a bagel, an apple, a licorice stick, roll, or cookie in his hand. I’m not quite sure why just holding a piece of food in his hand seems to compensate for being unable to eat it, but for some reason it does. Until now.
I was sitting right next to Robbie late the other night and watching TV while I fiddled on my laptop. I glanced over at him at one point and saw that he had something in his mouth and seemed to be chewing! He was grinning at me so proudly as if to say, “Look, Mom! This is great!”
“Robbie!” I gasped. “What do you have in your mouth?!” Whatever it was had all but disappeared, but the scent of oatmeal cookie was on his breath. A few crumbs, less than the size of a dime, were in the chair and two halves of a cookie were in his hand. I gathered the crumbs and tried to pry the cookie halves out of his hand. At the same time he was trying to peel open my fingers that held his crumbs while protecting the cookie in his other hand. It was a bit of a tussle. Finally he went into a little seizure and I was able to grab the cookie from him. When he came out of the seizure a few seconds later he reproachfully scowled at me as if to say, “Hey! That wasn’t fair!”
I almost cried. He had been so happy, and truth be told, I was happy for him. The first taste of something sweet in his mouth in twelve years! At the same time I was scared to death! I watched him closely to see if he would choke, but no—he coughed a bit but I saw no signs of him aspirating. Whew. I had such mixed emotions. Elation because it was yet another sign of Robbie getting better, and shared joy with him for this little taste of yumminess. Fear because it takes so little to bring on pneumonia in Robbie and that could kill him. Guilt that I hadn’t been watching more closely.
And then there was uncertainty as to what we should do next—try to encourage him in learning again how to swallow, or nip it in the bud immediately? It was dangerous to allow him to try to eat, and unfair to him if the attempt failed. It would only bring on desires, and disappointment if those longings could not be met. Still the temptation was great to give our child something that we all enjoy and is such a basic part of life. Sadly, we came to the conclusion that it was not worth the risks and that Robbie could no longer even hold a cookie in his hand.
We Christians are bombarded daily with temptations that look attractive and appealing to our senses and yet if we are honest with ourselves, we know they are harmful to our spiritual well-being and not honoring to God. Everyone around us is enjoying them, it seems—even fellow believers—so why can’t we? With every year that passes, we become desensitized to some things that a decade ago we would have rejected automatically. We watch movies and shows and read books that contain foul language and scenes that we would never have allowed in our homes before. We participate in questionable activities, citing Christian license and ignoring our responsibility to not be a stumbling block to others. We seek to be trendy and stylish; we try to “Christianize” the things of the world (Christian rock, Christian tattoos, Christian nightclubs); we embrace the world’s attitudes and values. We forget when we let our standards slip that we are to be examples of righteousness and role models for the generations that follow, and that their standards may slip even more as a result.
The things of the world are designed to appeal to our senses, to draw us in and make us feel like we are part of the “in” crowd. We have a carnal nature warring within us with the spiritual nature God gives us when we trust in Him. Satan appealed to Eve’s carnal nature when he tempted her with the forbidden fruit. “And when the woman saw that the tree was good for food, and that it was pleasant to the eyes, and a tree to be desired to make one wise, she took of the fruit thereof, and did eat, and gave also unto her husband with her; and he did eat.” (Genesis 2:6) We all know where that got us. On the other hand, no one would have blamed Daniel if he and his friends had partaken of the king’s table—it was the best food and wine in the kingdom and highly to be desired. “But Daniel purposed in his heart that he would not defile himself with the portion of the king’s meat, nor with the wine which he drank: therefore he requested of the prince of the eunuchs that he might not defile himself.” (Daniel 1:8) Romans 8:6-7 says, “For to be carnally minded is death; but to be spiritually minded is life and peace. Because the carnal mind is enmity against God: for it is not subject to the law of God, neither indeed can be.”
I John 2:15-16 tells us to “love not the world, neither the things that are in the world. For all that is in the world, the lust of the flesh, and the lust of the eyes, and the pride of life, is not of the Father, but is of the world” Although we are in the world, we are not of the world and we ought not try to imitate the world. God’s Word says, “Be ye not unequally yoked together with unbelievers: for what fellowship hath righteousness with unrighteousness? and what communion hath light with darkness? …Wherefore come out from among them, and be ye separate, saith the Lord, and touch not the unclean thing; and I will receive you.” (II Corinthians 6:14, 17)
“Come out from among them and be ye separate…” That is very clear. We do not have to be like the world to reach the world for Christ, as some would tell us. When we remain attached to worldly pleasures, attitudes or behaviors, be assured we displease our Father, we grieve the Holy Spirit and we bring reproach to the name of Christ. We are not to be conformed to the world but transformed… “I beseech you therefore, brethren, by the mercies of God, that ye present your bodies a living sacrifice, holy, acceptable unto God, which is your reasonable service. And be not conformed to this world: but be ye transformed by the renewing of your mind, that ye may prove what is that good, and acceptable, and perfect, will of God.” (Romans 12:1-2)
We should be different, so that the world sees a difference in us and wonders at it. “In all things showing thyself a pattern of good works… that he that is of the contrary part may be ashamed, having no evil thing to say of you” (Titus 2:7,8). When our light shines in the darkness of this world it brings honor and praise to God. “But ye are a chosen generation, a royal priesthood, an holy nation, a peculiar people; that ye should shew forth the praises of him who hath called you out of darkness into his marvellous light;” (I Peter 2:9) I love being called a peculiar people! Peculiar—special, unique, set apart!
That cookie—the temptation in Robbie’s hand—is not a bad thing in itself, but it is a danger to him and could, in fact, kill him. The analogy here is that all the glittery, delicious, sweet temptations of this world for the Christian are a danger that pull us away from our close relationship with Christ, that harm our testimony, and drag us down spiritually. As loving, caring parents we must tell our child no sometimes in order to protect him. Our loving Heavenly Father tells us to stay away from the lust of the flesh, the lust of the eyes, and the pride of life, as well, for our protection. It would be well to heed Him.
SUNDAYS WITH CINDY 