"I pray that out
of his glorious riches he may strengthen you with power through his
Spirit in you inner being, so that Christ may dwell in your hearts
through faith. And I pray that you, being rooted and established in
love, may have power, together with all of God's people, to grasp how
wide and long and high and deep is the love of Christ, and to know this
love that surpasses knowledge - that you may be filled to the measure of
all the fullness of God."
Ephesians 3:16-19
Ephesians 3:16-19
I would imagine that the love a mother (or father) feels for her child probably comes closer than any other natural love to that which God has for us. When our children hurt, we hurt with them. When they cry, we often cry with them. We empathize deeply with their pain and would do anything to take it from them or even take their place if we could. Regardless of our children's imperfections and shortcomings, and even when they are responsible for bringing about their own set of consequences, we still want to see them fully restored in every way.
I wonder what it would look like and how different things would be in this world if we all loved one another in the same way that we love our own children? If we could take this instinctive motherly love and offer it toward each and every person out there, I think this world would come much closer to looking like the world God intended, even in the midst of its present brokenness.
On the flip side, if we could fully grasp and comprehend the extent of the love that God has for us, and if we could fully trust in this perfect love, it would be much easier to walk through the fiery trials of this life. If only we could truly
comprehend the depth of this love God has for us and feel the great compassion He feels for us in our times of suffering, it would be much easier to trust in the outcome. But unfortunately, this is often much easier said than done.
Within just a few hours of finding Barret in a coma on the floor of his bedroom, and receiving the news of another chronic, auto-immune diagnosis for one of my children, I made the long drive to Children's Hospital in Birmingham where all of this had begun more than 10 years earlier with Kaylee. Although I knew that none of this had caught God by surprise, I was completely blindsided by this diagnosis. The truth was, I was fortunate that Barret was still alive. Yet, at this time, I did not know whether or not he would have any permanent damage to his brain. I knew that his life was about to change drastically either way. The weight of all of this made this drive extremely heart-wrenching for me.
School had just let out and our summer vacation had just begun. This had certainly not been in my plans for our summer break, much less for Barret's life. I was completely devastated.
I knew that the way I was feeling probably wasn't helping me to be able to receive any comfort from God, but in that moment, I think I was feeling a little hurt with Him. I just couldn't understand. Although I wouldn't want this diagnosis for any one of my children, Barret was already struggling in so many areas of his life. Just as Kaylee had always struggled with various learning disabilities, Barret was my other child who struggled in this area as well. In fact, his struggles were far worse than Kaylee's had been. It just didn't seem fair for this to be added along with everything else. More than anything else, my heart was hurting for my son. It seems that in moments like this, I find myself the weakest.
When I finally arrived in Birmingham, Barret was still unconscious and we still knew very little about the condition he would be in once he awoke. Even so, it was still a relief to be there with him again. At this point, all we could do was wait for him to wake up.
One of the rules in PICU (Pediatric Intensive Care Unit) was that we were not allowed to sleep while at the bedside of a patient, so as the night progressed, knowing that I had a big day ahead of me, I decided to go out into the waiting room to try and get a little sleep. Fortunately, my sister-in-law (Kelly) was there with me and she agreed to stay there with Barret that first night. She prayed over him, talked to him, and even sang to him throughout the night. It was such a blessing! Even though he did not open his eyes, and he appeared to be unconscious, he still remembers much of this.
One of my most vivid memories of this first night was when I made my way through PICU and out into the waiting area. I remember glancing at each child as I passed by. Most of these children were much younger than Barret, and some of them, clearly much worse off. There was an overwhelming sense of grief in that place that cannot be put into words, and while Barret was pretty bad off himself, seeing these children helped put things into perspective. It could be so much worse. It was possible that some of these children might never recover enough to live a normal life. Some might not ever leave that hospital.
I remembered having these exact feelings shortly after Kaylee had received her diagnosis. It is always easy in those situations to find someone who is worse off. And while seeing this helped me to be thankful that Barret's condition was at least treatable, it was heartbreaking for me to see what these other parents were experiencing. It was an overwhelming reminder of the calling I had felt on my life following Kaylee's healing. It was a reminder of the injustice in this world.
Out in the waiting room, I found myself surrounded by more weary parents (or close friends and relatives), some of whom had clearly been there for quite some time. As I looked around, that calling pierced my heart again. I wanted to share with each one of them the hope of Kaylee's story. I wanted them to know that God was hurting with them. I wanted to tell them to never give up or stop praying for their children's recovery! I wanted them to be assured that God was on their side! I couldn't bear the thought of any one of them believing that God was somehow behind this. Yet, at the same time, I was still feeling hurt with God for allowing this disease in Barret's life. Clearly my thoughts were not lining up with all that God had taught me throughout the time of Kaylee's healing. I knew in my head that God loved Barret more than I did and that I could trust Him concerning his life, so why was I being so double-minded?
I suppose it all comes down to those words of comfort that many people offer during times such as this: "God is in control", and what this really means. There was a point in my life when I took this to mean that if someone became sick, that was obviously God's plan and will for their life. If God was "in control", everything always went according to His perfect plan. This way of thinking gave me a sense of security, but at the same time, it made me weak and ineffective in my prayer life.
Yet, throughout my struggle with Kaylee's disease, I had come to understand that we do have an enemy in this world who is hard at work, seeking to devour and destroy God's children in any way he can. His goal is to derail and completely shut down God's greater purpose for our lives. Our enemy, Satan, is able to work, and even have small victories, through the sins of a fallen world. Although God is ultimately sovereign over all, and He can take the evil of this world and work it for good, I believe it is critical that we recognize this distinction. If Satan can cause us to confuse his evil tactics, or the consequences of a sinful, fallen world, with God's will, we become complacent, passive and weak. We have to remember that we are in an on-going battle to bring God's perfect will down to earth. It's not a given...
In Ephesians, chapter 6, we are told that when the day of evil comes, we must be able to stand our ground. We are told to stand firm against the devil's schemes. We are told to pick up our swords (the word of God) and to pray on all occasions. Many things happen in this fallen world that are outside of God's will. Simply put, sin is never His will, and it is looming all around us as well as within us. Because of this, we will continue to suffer the consequences of sin while here on earth. It is so important, not only for us as Christians, but even more so for the lost, that we do not blame God or connect the evil of this world with Him. We don't want to misrepresent the character of our loving, compassionate, perfect Heavenly Father to the lost world. Not only is he not behind or "controlling" the evil of this world, He hates it. I recently heard a pastor put it this way: "God allows adversity, but he is not the author of evil." Because God sees things that we cannot see and knows things we do not know, we have to trust that He is sovereign, keeping it under His control and working it for good.
As with many things, the issue of God's control is simply beyond our ability to fully grasp or understand. This is why it is so important that we trust Him with all of our hearts, even in those dark times that we do not understand. This is why it is critical that we seek Him and pray without ceasing when the day of evil comes. Looking back, the truth was, although I do not believe that Kaylee's disease was God's will for her life, and I know that God called me to stand firm against it, God had been able to use it and to work it all for good in the end. My children have all been forever changed by witnessing and playing an active role in the miracle of her healing. As crazy as it may sound, I simply couldn't imagine what our lives would have been if Kaylee had not become sick.
So while I knew all of this in the back of my head, and I knew I needed to trust God concerning Barret's life, in the hours following his diagnosis, I was having a very hard time getting my thoughts to line back up with all that God had shown me. Because of this, I was feeling extremely weak and fearful.
By early the next morning, Barret had finally awoken and was able to answer several questions with ease. In fact, the look of annoyance on his face, as these questions were being asked, assured me that his mind was going to be just fine. I could almost hear what he must have been thinking (and he later confirmed this to me):
"Seriously? I am laying here with tubes coming out of me, a giant diaper, and dying of thirst, and you are asking me these ridiculous questions?"
Hearing Barret's account of this story is really quite humorous. I am so thankful that God spared, not only his life, but his mind and great sense of humor as well.
My mind was put to ease once I knew he was going to be okay. But now we were faced with the temporary issue of his overwhelming thirst. For whatever reason, they did not want him to have anything to drink right after he awoke. So as he laid there desperately begging me to get him something to drink, I had to tell him to hold on. I tried to assure him that it wouldn't be that long before his thirst would be quenched, but he really just couldn't get it. I don't even remember how long it was, but it felt like an eternity. It was heartbreaking, especially after everything he had already been though, to have to see him suffer even more.
Thinking back, I believe this is a perfect example of how God often feels toward us in our times of suffering. He desperately wants to assure us that help is on the way, but it's just not what is best for us at that time. While I was hurting so deeply for Barret throughout this time when he simply could not understand what was happening to him, I am completely confident that God was feeling the exact same way toward me.
Eventually we were able to give him some juice, and later that same day, Barret was moved to a private room. At this point, I felt it was a good time to sit down and really explain to him about his diagnosis and what it meant. This was a very difficult moment for me, as I tried to hold back the tears. I had to tell him that he wasn't going to get "better" and that although he would be feeling much better very soon, his life was about to change drastically. I didn't even fully understand what all this was going to entail just yet, but I knew it was not going to be an easy transition.
Interestingly, Barret reminded me of something that had happened two days before his coma. He and I had been at the grocery store together when a young girl in line in front of us nearly passed out. Her mother had to catch her and apologized to us all as the line was held up while they went to find her something to drink. I hadn't even caught that she had diabetes, but Barret had. In fact, Barret had taken all of this in, and I am sure that it was no accident that we were at that place, in that line, at that exact moment. Although I felt grieved when he reminded me of this, envisioning his future, I think it was very timely for him to see and understand the seriousness of what we were facing.
Yet although Barret clearly understood the seriousness of his diagnosis, he did not take this news the way I had anticipated at all. In fact, I will never forget the first words out of his mouth: "So how long do you think it will take for God to heal me?"
I didn't know how to respond to this question. Admittedly, it completely caught me off guard. I knew that I had to be very careful not to say anything that might hinder the pure, child-like faith that I saw in him in that moment. There was simply no doubt in his mind. After all, he had just witnessed God heal his sister. I had been very open with my children about everything God had shown me throughout that time concerning disease. In his mind, it wasn't a matter of if God would heal him, it was a matter of when. He did not see this disease the way everyone else was seeing it, as something permanent for his life.
So while you might think that his positive outlook on this new diagnosis would have encouraged and strengthened me, it did the exact opposite. It made me even more fearful. When all the visitors left for the night, and it was just Barret and I left in the room, it was all I could do to keep from breaking down. I knew I couldn't cry in front of him. I couldn't let him see the fear that was starting to take over my mind. I was overwhelmed, not only by the seriousness of this disease, but by the way I knew it would be perceived by others. Who was going to stand with me to believe for a healing from type one diabetes? It had been difficult enough to rally people to fight the enemy over Kaylee's disease. Barret was expecting to be healed, and suddenly I was grieving more over what might happen to his faith if he never received this healing, than I was over the disease itself.
At one point, after he had dosed off, I went to the bathroom so that he could not see me and crumbled to the floor in tears. It was the first good cry I'd had since finding him. I couldn't really pull my thoughts together, and perhaps because I was also exhausted, I didn't even know how to pray. On the one hand, I felt guilty for being so broken over Barret's diagnosis when there were children much worse off than he was in that hospital. On the other hand, I knew that I couldn't accept this disease as God's will or plan for his life after everything God had shown me. I felt so incredibly weak.
And then it began... One by one, people came into our room with positive stories to encourage us about people living with this disease. It started with the diabetic trainers, who came in with a smile on their face and a positive attitude, while at the same time, every word out of their mouth instilled fear. We were told, for example, that from the moment Barret stepped out of bed every day, he needed to put shoes on his feet. We were told he should never go barefoot again, not even in the house or shower. If he did, he was at risk of future amputations to his feet. For some reason, it was always the little things like this that would bother me most. Barret loved going barefoot!
Not only were these trainings horrifying in so many ways (far beyond the issue of not going barefoot), the way that the nurses were acting instilled fear in me as well. Before Barret could eat, we had to check his blood sugars by pricking his finger. After this, the nurse would prick his finger a second time so that she could get a reading on her own meter. She would then compare her reading with ours to make sure they were close enough in range. Perhaps this was just over-cautious, hospital procedure, but she went on to explain to us that one or the other of the meters could be slightly off, which could be dangerous. If the meter readings weren't close enough to one another, we had to do it all over again, which meant two more pricks to his poor fingers.
After we made sure the meter readings were accurate enough, we then had to calculate the exact amount of carbohydrates he was expecting to eat before he ate (no more, no less). Once we did this, we had to then put in a formula based on his blood sugar reading and the carbohydrates he was about to eat to determine how much insulin to give him (in a shot). This would need to be done every time he ate a meal, and all of this carefully document in a booklet each day. Fortunately, we were given a list of the exact amount of carbohydrates on his tray, but I knew this would get much more complicated once we were back home, especially for a 13 year old boy who was about to enter into the years when a boy can't ever seem to get enough to eat.
Once we determined the exact amount of insulin to give him, and drew it up in the syringe, the nurse would then check behind us for small bubbles before giving him his shot. She explained that these bubbles could cause the amount of insulin to be inaccurate, which again could be dangerous. It was all very nerve-racking and I couldn't imagine either one of us being this precise about eating on a daily basis. I couldn't imagine being able to determine the exact amount of carbohydrates for every meal that I prepared for him. How could we be assured that our meter readings were always accurate once we got home? Once Barret was doing this on his own, how could I be certain he was doing everything exactly right?
After this, Barret was told that he only had a certain amount of time to eat his food before the insulin would no longer be active inside his body. Because of the coma and because he had not eaten for a couple of days, Barret's eyes were much bigger than his stomach. He was never able to eat what he planned to eat in the allotted time, but when the time limit was up, they would immediately take his tray from him. The trainer (or nurse) would then emphasize to us how dangerous it was that he had not eaten what he told us he would eat in advance.
Hour after hour, we listened to all of the horrible things that could happen if we didn't stay on top of this disease: It could harm his eyes (possible blindness), kidneys, nerves, skin, heart and blood vessels; dangerous sores could develop and become infected, nerves in the body could become damaged, causing pain, tingling, and loss of feeling, which could lead to amputations; it could become hard to control his blood pressure and cholesterol in the future, which can lead to heart attack, stroke, and other serious problems. On top of everything else, type one diabetes meant his immune system was compromised and he could develop other auto-immune diseases in the future, just as Kaylee had.
We endured hours of extensive training on how his life would forever be changed, and although they kept assuring us that we would get use to it and that it wasn't as bad as it sounded, they also continued to strongly emphasize all the things that could go wrong down the road if we didn't do everything exactly right.
These trainings during the day (more than 12 hours total) were followed by well-meaning visitors who tried to help us stay positive about this disease, and who tried to encourage us that people who have it go on to live normal lives. And while I truly did understand that things could be so much worse, it was a reminder of exactly what I was up against. I didn't want to hear positive stories about people that live with this disease or how it wasn't going to be that bad. It was bad! I wanted people to recognize the danger Barret was in on a daily basis. I wanted people to pray for him and to ask God to heal him! But the reality was, this was not going to be the response of very many people. Once again, this was going to be a life-long disease that we would be expected to accept.
I was exhausted throughout most of Barret's hospital stay, and still struggling to try and get back to the place I had once been in my faith. I was desperately trying to remind myself of what God had spoken to me, through the sermon the day before my birthday, August 17th, 2008. I could now see that God had sent me this sermon, not only for Kaylee, but because He already knew what was taking place inside of Barret's body as well.
Through this sermon that God had clearly ordained for me to hear for so many reasons, He let me know that Jesus died on the cross to free us from BOTH sin and disease. The cross provided a two-fold purpose. Disease has no more power over us than sin does! He let me know that disease is a tactic of the enemy (not a calling on our lives), intended to distract us and to ultimately derail God's greater purpose for our lives . He let me know that my starting point needs to be: "Yes!" "I BELIEVE!". And while Barret definitely had the right starting point, I was struggling, once again, to get back there. How had I gone from such a mountaintop in my faith just a few years earlier to this faithless, broken mess?
At this point, I desperately wanted to be reconnected with the people from the church where Kaylee's healing service had taken place. I didn't care about what they were saying about me, how they had treated me, or about the discord that Satan had so craftily created among us. They shared the same viewpoint that I did concerning disease. I needed them! But the reality was, I had been cut-off from this congregation. The isolation and rejection that I had been feeling for quite some time, never felt more real than in that moment.
During one of my trainings on diabetes, God revealed something to me that helped me better understand the weakened condition I was in. The trainer began to explain to us what doctors believe happens to someone with type one diabetes. She explained that Barret's pancreas had likely been attacked by some sort of virus or bacteria at some point in his life. She went on to explain that his immune system had become "compromised" (confused), and instead of targeting the foreign invader, it had begun to target and attack Barret's pancreas, ultimately destroying the pancreatic beta cells that produced insulin. Up until that point, I had never heard auto-immune disease explained exactly like this. And in that moment, suddenly I understood my own condition. I had become "the pancreas"!
Following Kaylee's healing, my faith had been at an all time high. I had immediately felt a calling on my life to share Kaylee's story and to encourage others to never give up fighting for their (or their children's) healing through fasting and persistent prayer! I felt called to share all of the things God had shown me, and to testify to the power of love and unity that I had witnessed on the night of Kaylee's healing.
Yet almost immediately following this calling, I had become a target. Every time I attempted to move forward in this calling on my life, the enemy would strike. Not only was he bringing up the brokenness in my life, my past mistakes, my many weaknesses and shortcomings in my own mind, he had begun to build a case against me, using these very things, within the church as well. Because the attack was coming at me from both directions, it had impacted me more than I realized. I had lost my confidence, my strength and my focus.
So once again, this is why I feel so compelled to share our story in its entirety. If this happened to me, I know it has happened to others within the Body as well. I can't help wonder how many miraculous testimonies or critical callings have been shut down because of the enemy's divisive tactics within the church. Had I never had the opportunity to become a weaker, disregarded member of the Body, I would never have fully understood. You see, although all of us have a need to feel loved and supported, those at the greatest risk of being completely shut down are the weakest among us. As I had learned throughout the time of Kaylee's healing, it is those whom most of us disregard, the invaluable "broken violins" who God desires to use in our lives! If they are shut down, we will all suffer the consequences.
"The eye cannot say to the hand, 'I don't need you!' and the head cannot say to the feet, 'I don't need you!' On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it." I Corinthians 12: 21-26
I do believe that our testimony and the calling I feel on my life is meaningful and purposeful. If it wasn't, Satan wouldn't have come after me the way he did. Yet although it has been very difficult at times, I praise God today for allowing things to play out exactly the way it did. Not only did He demonstrate to me the value of the weakest among us, He allowed me to walk in their shoes so that I would fully understand just how debilitating it is. I learned that when you're already weak and broken, when those within the church join in the attack against you, you start to question yourself. You start to doubt your calling and your purpose altogether. You wonder if you got it all wrong. Your strength and your confidence is terribly shaken, especially when the attack is coming from those who are meant to be your support system and your defense. How can you believe in yourself, and the calling you feel on your life, when the attack is coming through those who are suppose to be Spirit-led?
I did not choose the calling God has laid on my heart, and to be completely honest, this is not a calling I would have chosen. I would much prefer a more glamorous, less controversial calling. Yet, when I was reminded in that hospital, once again, of God's heart concerning those who are held captive by life-long, debilitating disease, I knew that I had to pick myself back up, put on my "full armor", and continue to stand firm against the enemy's schemes. This is not about me; it's about God! When God lays something on your heart, that urging just won't go away.
As Christians, we have the responsibility to be an "immune system", to build up and support the Body as a whole. In order to be able to do this effectively, we must recognize the difference between what belongs in the Body and what does not. This is not always easy. There will be false teachers. There will be wolves in sheep's clothing and those who desire to divide the Body against itself. There will be various interpretations to scripture, different theologies and viewpoints, weaknesses, strengths and gifts. The only way to function, and to be an effective, healthy immune system is to be completely humble (realizing that we do not have all the answers), to value and love one another unconditionally, and to do our best to be Spirit-led. We cannot do this on our own!
The two-fold message within our testimony concerns the need for homeostasis and unity, both within our physical bodies, and within the Body of Christ. If we don't recognize the value of each and every member within the Body, we will never be the whole, fully functioning Body of Christ God intended for us to be. If we are not a whole and healthy Body, we are not going to experience the healing and miracles that God desires to do here on earth. The two go together.
As of today, Barret has not yet received a complete healing from type one diabetes, but we continue to pray daily for his full recovery. Every day of his life is a on-going battle to try and maintain homeostasis and balance within his wounded, broken body. The lack of stability within his body often leads to chaos in his every day life. Just as I anticipated, it has made his academic struggles even more challenging. In fact, everything in his daily life is more difficult because of this unwelcome disease.
Yet even so, I choose today not keep my focus on this setback in his life, but instead, to use it as a continual reminder of the calling God has laid on my heart for the sick. There are so many out there who are far worse off than Barret! People's lives and callings are being completely shut down due to the consequences of debilitating disease, depression/mental illness, etc. God is not the author of this evil, and as the Body of Christ, we have got to wake up and recognize what is happening to our beloved, invaluable, indispensable members. We have got to be the effective support and defense that God has called us to be. This begins, first, with the recognition of what belongs in the Body and what does not. It is a dangerous perspective within the church to view disease, or any consequence or form of sin or unrighteousness, as something merely intended to glorify God through. Jesus did not ever take this stance concerning the sick. Our response and concern for the sick should be no different than his was. He is our example! We may not always receive the healing that we are praying for here on earth, and there are going to be times when we do not understand, but this should not keep us from fighting for others the way God has called us to. Remember, When one part suffers, every part suffers with it.
"Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourself fully to the work of the Lord, because you know your labor is not in vain." I Corinthians 15:57-58
Thank you for taking the time to read my blog. I hope it has been a blessing and encouragement to you. Please continue to pray for us, as we share our personal testimony, that God will use it as He has intended. My heart's desire is for God to be glorified through our testimony and for others to experience the love and healing that we experienced on August 18th, 2008. For those of you who are struggling with sickness and disease, I want to encourage you to keep fighting! Keep believing! I want you to know that God has not forgotten you! He has laid you heavily on my heart! You are never without hope. He is on your side and He is fighting for you! As much as I love my son, it does not come close in comparison to how much God loves you!
"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord" Romans 8:39-39
