Special Needs Adoption - Dog Adoption

Jennifer and I have always talked about adoption. We wonder if that will be something we do at some point. We also wonder if we would adopt a special-needs child. We feel drawn to them, but we also hesitate knowing all too well what it would mean. But, in the meantime, as many of you know, we adopted a dog. Lily has been a great addition to our family. But it seems that our dog is a special-needs dog!

She has mange, which is common enough, but I never knew it was a genetic immune disorder! All dogs have mites and usually without issue. But if a dog has a suppressed immune system, they cannot resist the mites' impact. Further, it appears Lily is having short, focal seizures! Yes, seizures! On Jacob's page, I wrote about how much Lily and Jacob have in common. Well it appears she is trying to be like Macayla as well. Oh, and I say this sort of tongue-in-cheek, but Lily is trying to be like me and have sleep apnea! She is the first dog I've ever seen at the age of one who will fall asleep sitting up even when she is begging for food. How did we get a special-needs dog?

Wish I had One of those Star Trek Thingies!

Star Trek came on in the afternoons when I was a kid. I can't remember which of the three channels it aired on, but I loved watching it. Dr. McCoy always carried a little medical scanner with him on trips down to the planet surface. It could diagnose any problem without surgery or invasion of the patient. I wish I had one of those!

Macayla is doing well over all, but I must admit that my definition of "well" is not fixed. For her, "well" means she has not thrown up or had many seizures and her breathing is good. She has been a bit more interactive the last couple of days, but that tends to increase seizure activity. One interesting observation: she gets a twitch in her right thumb anytime she has a seizure, reacts to stimulus or her facial expression changes. Her face still goes back and forth from pale to flush at times. Her cough reflex seems weaker and the swelling that was in her feet seems to be more in her legs now but not as pronounced. Her left hip is going in and out of joint, though it does not seem to be causing much discomfort at this point. All of this is why I wish I had Dr. McCoy's medical scanner thingie! I wish I could just see what is happening on the inside, measure pain and discomfort, and know better what helps and what hurts. But we will be waiting a while on those. In the meantime, prayer, hugs, kisses and medications are all we have.

So many sci-fi movies last century predicted we would be traveling in big cruisers to other planets by 2010. We are a little behind schedule. But I think we should develop all of the Star Trek gadgets before we build a starship. Give me a medical scanner thingie and a phaser! Ooh, and a "tricorder" and a transporter and a...

Job's Grief

Macayla has not given us a reliable pattern or behavior. Her vomiting has not been as predictable as we would prefer. The times when she is most interactive are unpredictable. Her throat is weakened and causes gagging quite a bit. It is sad to watch and often we feel helpless to do much for her. We take some comfort in the fact one of her new medicines, Lorazepam, seems to help keep her comfortable. We just wish we could do more for her.

I've been studying the book of Job lately. It is a difficult book to study and there are many facets to consider. God's sovereignty, the nature of suffering, counseling, and grief. We have bouts of grief quite often. We speak about it and even rage through it. Job spoke of his grief in powerful ways. He wished for his own death because his suffering was greater than most of us could even begin to fathom. His friends tried to correct his words and thinking in the midst of his grief. (Not a good way to start off counseling). Job's response resonated with me. "Do you intend to reprove my words, when the words of one in despair belong to the wind?" (Job 6:26) Sometimes we just need to vent our grief. We may even speak wrongly or incorrect theology in those moments. In Job's case it is notable that God later said Job spoke correctly and his friends did not. But spoken correctly or not, we may need to speak, rage, vent or cry through our grief. Job's friends did the most good when they were just there and kept their mouths shut! They messed up when they tried to explain God's motives to Job.

This weekend, we had friends and family come to visit. Friends from our church in Greenville and here in Anderson. My family from Aiken came to visit. Lately, my grief has been palpable and at times overwhelming because of all the changes in Macayla. This weekend has been a blur but comforting. Having friends and family here to just hang out, eat with, and love on was one of the biggest comforts there is. We spoke about things, though I can't remember exactly about what. We joked. We hugged. Did I mention we ate? We enjoyed watching the kids play and the dogs run themselves into exhaustion. Everyone got to see Macayla and love on her. It is amazing how stupefying grief can be. I really feel like I was only half awake in my interactions with everyone. But I woke up comforted this morning. The exhaustion is still here in spite of sleeping 13 hours last night! But God's comfort has been passed on through His people. Thanks be to Him and all who He worked through this weekend.

Beyond the Smiles

Macayla has had more days of sporadic vomiting, but she has also had some great moments of interaction. Last night she smiled and cooed with me. She looked like she was about to burst in laughter. These moments of interaction have lasted for about one to three hours at a time and she sleeps otherwise. The latest exception to this was Monday night when she did not sleep at all. She was awake and interactive. We gave her some medication to help stop her jerks and twitches, but it did not put her to sleep. So, I got most of the night Monday to interact with her and she slept for most of the next 24 hours.

Her smile is one of the most beautiful sights on the planet. It's a beauty that is beyond the surface as I cannot seem to catch it with the camera. Photos of her in full smile do not communicate it. There is something about the live event of her smile that gives you the full experience of beauty. It lets us know that she's still there and in spite of everything, she will be alright when the dust settles. For "in all these things we (followers of Christ) overwhelmingly conquer through Him who loved us. For I am convinced that neither death nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is Christ Jesus our Lord."

Autonomic Nervous System

It is amazing to think how wonderfully and fearfully we are made. Macayla's recent symptoms has educated us on part of the nervous system we have never given much thought to. Really, we don't put any thought into this in our own bodies. The autonomic nervous system works "autonomously" to control our bowels, bladder, blood vessels, stomach, etc. The signals just go on their own without us having to think about it.

For many months now, Macayla has had spells where her face would become beat-red or deathly pale regardless of her temperature. Her bladder function has often been sporadic. Over the past week, she has had spasms in her abdomen and swelling in her feet and hands as well as vomiting. Our neurologist had us draw blood yesterday to check her Depakote levels and amylase to check for pancreatitis (a side effect of Depakote, also known as Depakene or valproic acid). Her levels were normal and her Depakote was not even high enough to be therapeutic. So, it needs to be increased.

So, now our best guess is that her symptoms stem from the autonomic nervous system not functioning as well. It would explain why her bladder functions fine for weeks then suddenly stops for a day or two. It would explain the color change in her face as this system can constrict or dilate the blood vessels there. It is this system that makes us blush. It would explain the swelling in her feet as signals are not making it through to move fluid around properly. The amazing thing about this system is that the signals sent from our brain travel part of the way via nerve pathways and part of the way through chemical mediators. The type of action stimulated by this system depends on which chemical is used. One chemical causes blood vessels to constrict while another causes the vessels to dilate. One cause the bladder to contract while the other inhibits the bladder. When these chemicals are out of balance, problems start. The system is controlled mostly by the hypothalamus which is near the brain stem. If there is a problem in the hypothalamus, obviously there will be problems in the system. It is a wonder any of us function properly. In fact, I think it is a miracle.

But the sadness here is that if Macayla's autonomic nervous system is being impacted, then the deterioration is reaching her brain stem and the nerve pathways to these basic functions. It means her heart and lungs can be impacted. It means she may have symptoms such as vomiting for which there will be nothing we can do to bring comfort. It means we are facing what we dread.

But we know that the God who could create the amazing bodies he gave us has a plan. He will weave our lives and decisions into that plan. He will not allow Macayla's life to be wasted. He will heal her of these things, either while she is with us or when she is with Him. That's what this weekend is all about. Christ defeated death and sin at the cross and tomb. Now we truly only have to walk through the valley of the SHADOW of death and not the valley of death itself. He has promised, when this amazing plan of His is complete, that those who belong to Him will see the full victory. Even death's shadow will be destroyed by the light, love and life of Christ. This same God has promised to hold our daughter in His hands. Thanks be to God!

Crossing A Line

For several weeks now, Macayla has been sleeping more and less responsive. At first we thought it may have been related to medicine changes, but it does not seem to be now as her initial levels were low and she even perked up a bit after being on the meds for a while. We get about six hours of awake time in a twenty-four hour period at best. Even then, she can be slow to respond at times. But she still smiles often and she still seems to recognize our voices.

Unfortunately, she started retaining fluid in her feet this weekend. We are not really sure why, but she has never done this before. The swelling is minor right now and does not seem to be causing any discomfort. Overall, we seem to be crossing the line over into the vegetative realm. It is hard to qualify or quantify a vegetative state in these cases according to our neurologist. He told us that usually a vegetative state occurs when someone suffers a brain injury that causes a coma and then they come out of the coma into a vegetative state. Macayla is coming to it from the other direction. She is descending into a vegetative state and doing so slowly. So, she may be out of it but still give us smiles. It is not like a switch is suddenly going to be flipped and she change her status. Instead, the times we have with her awake will grow briefer and further apart. Of course, we hoped we would never have to cross this line. We hoped Macayla would stay alert until the end, but that may not be as good for her. It is hard to know for sure, but being vegetative could make her less aware and that may make things less frightening for her when they come. How I wish I could just make it all better for her.

The latest change that seemed confirmed for us last week was that she had multiple little (short in duration) seizures on Wednesday that involved her eyes, arms and legs and at the end of each one she would gag as if someone were sticking their finger down her throat. We suctioned but got nothing because there was nothing there. It confirmed for us that sometimes her gagging is seizure related. Either the throat muscles are contracting with the seizures and closing her throat, or there is a loss of signal and it causes the muscles to go floppy for a moment. It's hard to know, but we are starting to see some differences between gagging that is caused by mucus and gagging caused by the throat not staying open.

We appreciate any prayers for strength and comfort.

Feel Like a Kid Again

There was a quiet moment this morning in our house. Mainly because Jacob was not here and the dog was outside. There was no TV or music. I was standing in the kitchen and morning sunlight filled the sink from the window above it. The faucet was running and gave off a residual mist that glistened in the light. There was a fly buzzing around. I turned the faucet off and listened to the quiet and the fly. I suddenly remembered being a four year old in my great-grandparents' home. My sister and I used to stay there in the afternoons. It was a shoebox of a house, but at that age it might as well have been a mansion. I remember playing on the floor in the dining room while sunlight would stream through the curtains. I was chasing a buzzing fly around the table and chairs. My running stirred up dust and the little flakes and particles glistened in the sunlight. It almost seemed like pixie dust floating in the air. I tried to catch them but they disappeared as soon as my hand got close. I blew them and they would swirl wildly on my breath. Then the fly would buzz nearby and I left the magical particles to find the amazingly agile insect. I could fill many hours in their home on the simplest things in complete wonder.

How often do we miss what children see so clearly? Flies and dust are disgusting to me now, but they were sources of such wonder and exploration as a child. Ravi Zacharias wrote a book called Recapture the Wonder. It is book for most audiences (not as academic as some of his other work) and it addresses this very problem. I call it a problem because when we cease to see the wonder around us, we will miss the One it points to. Jesus said we are to come to Him like a child. He does not mean for us to become childish, but child-like. Child-like does not mean we simply believe everything we hear. This is not a call to "blind-faith". It means He wants us to see the wonder of what is around us, explore it and see how it leads us back to Him. We can peer into His word with fresh wonder and not guilt-driven, self-righteous labor. We can wonder and exult in the hope that comes to us through Christ, even in the midst of suffering. Suffering. That is the stuff adults warn children about when they get "into the real world." Children are in the real world and they often see it clearer than adults. Adulthood seems to muddy the water with cynicism and disappointment. I thanked God today as I heard the buzzing fly and saw the streaming sunlight. I thanked Him for Romans 5:1-11. Check it out.

As I finished typing this, my beautiful wife just brought me an ice cream cone. Boy, I feel like a kid again!

Mac & Lily

Cast Off and Adoption

Macayla had her cast removed on Monday. She is stiff in the elbow and a bit sore, but good. Unfortunately, we think she had a seizure Monday afternoon/evening and she just had another a few minutes ago. She will hopefully stay passed out for a while and have no more. But we are glad the cast is off and she can get back to moving her arm again. She may never regain full extension, but that is o.k.

In the meantime, we have adopted a one-year-old named Lily. She is beautiful and her hair is almost white and she has beautiful dark eyes. She also has four paws and a tail!! She is a lab mix and has been a huge source of excitement for Jacob. She came home from the animal shelter yesterday and seems to be adjusting well to her new abode. She doesn't seem to want to chew on much except what you give her and is not too big and not too small. Jacob has been loving on her a bunch and didn't want to go to school today because she was here. But she went along with us to drop him off and he liked that.

Macayla is a trooper, but I just wish we could make it all better for her. Her smile is still there and she responds well to us and even to Lily. Lily has been interested in Macayla, but seems a bit nervous to explore the house so she hasn't been in her room too much. Lily didn't know how to respond when we suctioned Macayla during the seizure a few moments ago. I am curious to see how the kids and the dog grow in their relationship.

Forgiveness

I met a man who, as he learned about Macayla, shared he had lost a daughter to a rare condition several years ago. His comment was, "I guess that was God's way of punishing me for my past." I listened to his anguish. He was not a church-goer or anything, but he believed there was a "God" somewhere "up there" who was mad at him.

Often we fall into two extremes when it comes to our past and present sins. We either forgive ourselves too quickly or not at all. Sometimes we may be too quick to dismiss our immoral actions and never take accountability for them. This, of course, breeds further problems. But we may do the opposite and never forgive ourselves or believe that God could really forgive us. Our choices and actions impact us and those around us and sometimes with devastating results. We may never share with anyone the guilt we carry around. This guilt can become a barrier to truly accepting forgiveness from God, others or ourselves. To be sure, guilt can initially act as a conduit to bring conviction and change. But when there is only guilt, it is neither healthy nor helpful to our transformation. I even think there is a difference between, regret and guilt. Regret, as I mean it here, is the desire that we would have done things differently. Guilt is the weight of our culpability in the things we regret.

Forgiveness from God is an act of His grace. He extends forgiveness when we repent from our sins and realize that He paid for those transgressions at the cross. We cannot earn it. Our good deeds do not cancel out our bad deeds. God is not grading us with a set of scales, waiting until our good deeds tilt the balance, making us worthy of forgiveness. In fact, none of us are worthy of forgiveness. But God saw fit to extend mercy through Jesus Christ and for those who receive this gift there is no longer any condemnation. It's amazing how the God of the universe will forgive us, but we cannot forgive ourselves or others. Maybe it's because we think of God as some warm and fuzzy grandpa in the sky and think he is obligated to forgive. But God exercises real justice for those who have sinned. He is no pushover and he does not wink at immorality. If He can forgive us, then we can forgive those who have hurt us. If He has forgiven us, then we do not need to live under the weight of endless guilt. Yes, we will still have regrets, but healthy guilt will be replaced with conviction and change if we truly trust God's grace.

I tried to assure the man I spoke with that his daughter's death was not a punishment doled out by God for past transgressions. If God punished each of us for our sins, we would all be dead for that is what we deserve. I tried to assure him that God poured His just punishment on Jesus Christ on a hilltop just outside of Jerusalem's walls. But, this man could not let go of the guilt. Guilt did not lead him to Christ, but kept him from Christ. It is a sad thing when we think our sin is bigger than God's mercy.