The Soul Felt Its Worth

Every year the radio stations start playing Christmas music more and more, earlier and earlier. I’m waiting for the year they end the broadcast day on July 4th with the “Star-Spangled Banner” and start July 5th with “Jingle Bells.” But each Christmas season I find myself scanning the radio stations for the song “Oh Holy Night.” It is my absolute favorite. It captures the essence of what Christmas (from Christ Mass) is about, what it means that God became flesh and dwelt among us. The song identifies our existence in a world that lay in sin and error pining. But when HE appeared, the soul felt its worth. This line doesn’t say that the soul wasn’t worth anything until he appeared, but it says that the soul had worth but apart from Him we can’t recognize it. We have to come to realization that God loves us so much that he was willing to put on flesh with all of its weaknesses and nerve endings and pain and not only live in that state, but die that way. He did it so we wouldn’t have to die that way, but so that we could live in glory and freedom. Our souls feel their worth when we realize that the God of the universe lived and died for us in the flesh. He values us, so we are valuable. Self-esteem is truly accomplished when we learn of God’s esteem for us. This news gives us a thrill of hope and in our weariness we can rejoice. “Fall on your knees,” the song says. For some this may seem like a demeaning demand, but for those who have truly discovered their worth as a child of God, falling on their knees is a natural response. It is actually joyful and awe-filled instead of being compelled by an unwilling sense of guilt-driven duty. The song takes us to that moment in time when God in the flesh could be observed in Bethlehem. “Led by the light of Faith serenely beaming, with glowing hearts by His cradle we stand.” We can only come to the cradle and likewise the cross by the light of faith and that faith is authored by the One that was in the cradle and on the cross. Then the song states the amazing and almost paradoxical essence of the Gospel, “The King of kings lay thus in lowly manger.” The God of the universe lying in a feeding trough!! Why? Because He loved us that much. “In all our trials he was born to be our friend. He knows our needs, our weakness is no stranger [to him].” Behold our King! This song strikes the deep chords of our hearts. Macayla’s disease, cancer, violence, our sin and the evil of this world are undeniable, but the God of the universe loves us and so much so that he lowered himself to be born in the weakness of skin and bone, to be subjected to this evil world, to be tempted in every way but free of sin. He values us. He wants to free us and the creation around us. “In his name all oppression shall cease.” We know what we and the world are like. We know what we and the world SHOULD be like. Jesus gives us faith and grace that guides us from where we are to where we should be. This faith and grace empowers us along that journey. This faith and grace transforms us from who we are to who Jesus created us to be. Indeed, let all with in us praise His holy name because that Holy Night led to Easter Sunday!

Just A Little ER Visit

Macayla was crawling in the kitchen and had a seizure and fell forward. She does this quite often and it is hard to catch her when she falls this way. Normally she just bumps her face or at worst bust a lip open, but this time, she split her chin open. She needed stitches so we took a little trip to the ER. They opted for gluing the cut closed instead of stitches. Macayla was acting as if nothing had happened and she pretty much stopped crying as soon as I bandaged her up. She didn’t cry at the ER and was content just about the whole time. This little diversion put us off schedule for giving her meds so she didn’t get her sleep meds at her normal time. It was after 1:00 am before she fell asleep. But she did well through the whole ordeal and we are thankful that this hasn’t happened sooner or more often. It is hard to balance her needs at times. She needs to stay as mobile as she can for as long as she can so we encourage her to crawl and walk with assistance. But we have to keep her safe and that is not always easy while she is mobile.

Dodge-Devouring Dachshunds

The more I ponder this, the more I am amazed at the fact that a 9 pound dachshund can totally disable a 2,000 lbs Dodge van. That is what is so annoying. My weakness is that when little things go wrong, I become a lot less Christ-like. I seem to handle major catastrophes better than little problems. It seemed that everything went downhill after the wiener attack. Because we had to drive to get another car late in the evening in the rain, that put the kids and us going to bed much later than normal. To add insult to injury, all of the excitement helped us forget to give Macayla her meds until we got back. This meant she fell asleep much later and then slept much later the next morning. This made us late, but it looked like we were going to make it out the door on time anyway. That was until Macayla had a bad diaper. So, that put us behind and we didn’t have time to make it to the lab to draw blood before going to the eye doctor. So, I got her to the eye doctor and gave her medication and some breakfast. In the meantime, the van was not repaired until yesterday because I have no way to safely secure Macayla while I worked on it until Jenny got home, but by then it was too dark outside to see. All of this along with a laundry list of other things exposed my less desirable character traits. I find myself relating to the van. Some of the smallest things can bring me to a halt. Mole-hills become mountains. Dachshunds become devastating. This is something I pray for God’s grace to overcome. But it does make me feel even more foolish to realize how much this situation has exposed this weakness. At the same time I guess I should be thankful that the Spirit is showing it to me. Maybe there is an opportunity for Him to show His strength in my weakness. In the meantime, I believe that the “Truth in Advertising” statutes of this country should require Dodge to come up with a more truthful sales campaign.

Eye Doctor

One of the major symptoms of Battens is blindness. Macayla went to the eye doctor and her eyes show little change. There is some pigment change in the retina which would correspond to any loss of peripheral vision. The doctor said that it was still so slight of a change that he probably wouldn’t be concerned about it or mention it accept that he knows Macayla’s condition and history and that is the only thing that makes it noteworthy. We had noticed that Macayla would respond less to visual stimulus in the peripheral of her field of vision. She also seems to have lost some depth perception and has a hard time finding people or objects at a distance. Her optic nerves appear to be in good shape. Basically, the doctor said that structurally the eye is good, but it is difficult to tell objectively how good Macayla’s eye sight really is since she cannot communicate what she observes. There is no way to know for sure how the brain atrophy is affecting her visual cortex. So, we just have to watch and be aware that she will obviously respond better to images that are directly in her focus. We are thankful that her vision is doing as well as it is.

When It Rains Cats and Dogs, It Pours!

The rain pelted the window panes by the kitchen table where Jacob sculpted ducks, rabbits, and biscuits from play dough. Macayla was sleepy in her chair and was only half interested in the bright pink dough. I heard the rain begin to slack up a bit and as it did the sound of drops against the windows was replaced with barking and yapping. This is not an unusual sound in our neighborhood because there is a rogue pack of long-haired dachshunds that will wander onto our street from time to time. They bark. They poop in our driveway. They are annoying. I was at home with the kids by myself, so I was too busy to look outside to see what the little pack of Oscar Meyers was up too. But after about ten minutes of the constant barking, I looked outside. I see tails and short hind legs protruding from under our van near the front driver side. I ran outside and the short-legged demons of annoyance scattered. I went to the front of the van to discover they had chewed through a conduit of wires. Black, corrugated conduit and bits of wire were lying on the concrete. I pull out my keys and try to start the van. It turns over, but it won’t run! They had severed the power to the fuel pump and gauge. AAARRRGGG! In a fit of anger I so wanted to have a target practice session. I could even have the little critters stuffed and mounted in my den! But then it dawned on me, “Why were they so interested in the van?” They had been chasing something that ran up into the engine compartment and I had just turned the engine over several times! I cautiously raised the hood to find a huge, fluffy cat was sitting on top of the engine block. He hissed at me and ran off with the demonic wieners in pursuit. Lucky for him (and me) the engine belts and fan didn’t chop him to bits. Enough was enough. I called animal control for the first time in my life. ALL of the officers were in hazmat training. Hazmat training! I knew from my time in law enforcement that animal control usually only works from 8 to 5. (Since animals never cause any problems at night.) So, needless to say, the little van vandals got away. The van was dead and the rain began falling again. I didn’t let up for hours. When Jenny got home I went out into the rain to try and fix it, but it was dark and even with a flashlight, I couldn’t tell a black wire from a green wire. We had to play musical vehicles with her parents so I could get Macayla to a doctor’s appointment the next morning. But mark my words, this is not over. The animal control dispatcher reassured me that I have the legal right to protect myself and my property by any means necessary! Oh, I will miss dispatcher, I will! The bb gun is pumped up and ready!

Toxic Green

Macayla has wheels! She now has a wheelchair and she seems to really enjoy it. It is very supportive and makes her feel very secure. Jacob had to try it out of course, but Macayla did not care for him being in her chair. It is mostly black, but the frame is “toxic green.” It is a bright light green color and her name is embroidered into the seat in green as well. We are very glad that she finds comfort and security in the chair. Due to the color, I doubt we will have a problem confusing her chair with anyone else’s.
A little over a week ago, Macayla participated in my sister’s wedding. She was part of the wedding party and with Jennifer’s assistance, Macayla was actually able to walk down the aisle. I helped to conduct the ceremony, so I was at the front with the pastor as she walked down the aisle. I suddenly realized that, short of a miracle, this would be the only time I would see my daughter walk down the aisle. She did great but it was much harder on us than Jenny and I thought it would be. She and Jacob were adorable and their cousin, Rebecca, helped to bring comic relief for us all.