Kathi’s Women’s Retreat Testimony
This weekend, Kathi is speaking our church’s Women’s Retreat in Buena Vista, Colorado.
This is Kathi’s testmony as she will give it on Saturday night.
I know some of you, right now, are expecting me to talk to you about Maggie, quote a few scriptures about God’s protection and sovereignty, and that ultimately everything ends up ok because God is in control. And while some of that is true, that is not why I’m here and none of that really matters when you are in the throws of a crisis.
When you walk with God from the perspective that He is God and you are a dirty rotten stinkin’ sinner who deserves nothing but hell without the blood of Christ covering your sins, it is scarry. Scarry because you know God is not a Geanie in a bottle who can be controlled with the right prayer, the right deeds, the right sacrifices, etc. He is God and He does not “owe” us a miracle. He doesn’t owe us an explanation. He doesn’t have to let us see the battle from behind the scenes.
What I’d like to talk with you about is what really matters when you are in the throws of crisis, and how important it is to live your life transparently before God. You see, I’d come to know that God is good no matter what, but I had no idea that He was not safe.
Five years ago, my husband and I started noticing some strange behaviors with our 5 year-old daughter, Maggie. She began seeing things, shapes and people began looking strange. When Rob would cook on the grill, we would find her curled up like a baby in the corner of the yard scared of the fire. She complained a lot of being confused, not being able to think. She would wear winter coats in the middle of the summer. She would often get sick at the smell of food, and the noises inside of restaurants made her nauseated as well. She would lay on the couch for hours on end, unable to get up. For the longest time, Rob and I thought Maggie was jerking our chain, trying to get attention. We spanked her and disciplined her. When the behaviors wouldn’t change, we started taking her to doctors. She was prescribed numerous anti-depressants, counselor’s told us that she shouldn’t be homeschooled, they thought Maggie was having an appendicitis, severe stomach viruses, on and on. Maggie continued to get worse and doctors were not able to figure out what was wrong.
I remember sitting with Dr. Analise Spees in August of 2003 going over Maggie’s symptoms, the number of doctors we had been through, and she asked me, probably already knowing where our life was about to take us, “What are you going to do if this is really bad? How are you going to deal with this?” I gave her all the right answers: the Lord gives and the Lord takes it away, God is sovereign, blah, blah, blah. As far as I was able to, I meant it. However, I never had to live that out.
Two weeks later, we went for an MRI. Dr. Spees called the afternoon of the MRI, and in such a calm voice, said “Well, I’ve just gotten off the phone with the radiologist, we’ve had a very thorough reading, lots of radiologists have looked it, and we’ve found one brain tumor, possibly two. I’ve set up an appt for you to meet with a neurologist at 7:00 tomorrow morning.” From that point on , life moved at 80 mph, often times requiring immediate breaking, other times requiring sudden acceleration.
I don’t remember putting the kids to bed that night. I do remember Rob laying in Maggie’s bed, crying and holding her as she slept, sometimes waking up with seizures. I remember thinking “ these kinds of things don’t happen to people like us. Things like this happen to those other people, far away.”
We went to the neurologist the next morning and he basically told us: this is bad and it is going to get really bad. He basically layed out everything that we have been through the past 3 years!
Up until now, we had not told Maggie anything. It wasn’t until Rob sat down with all four kids later after we got home that she would find out what was happening to her and our family.
We got in the van to go home, and Rob pulled over to call Joseph Wheat, our pastor. I was in the van with Maggie. After sitting there after a couple of minutes in silence, Maggie asked me “ Where is Daddy”. Oh, he’s just making a phone call. He’ll be right back.” I remember thinking, I don’t want 3 kids. I want 4. The only thing I remember saying to God that day was “Please give me grace. Help me turn around and smile at her. Help me talk to her without crying or throwing up.”
Rob wrote something about our ride home that gives a different perspective on that ride home, too. Here is what he wrote of that time:
As I walked out of the doctor’s office, my head reeled with information overload. Tears threatened, and I felt sick to my stomach. Life as I knew it had just changed.
With Maggie and Kathi in the van with me, I pulled over to call my pastor. I got out the van and sat on the side of the road – “Maggie has a brain tumor, possibly two, and it doesn’t look good at all,” I began. Then I broke down, sobbing. After praying with my pastor, I hung up the phone, and wept uncontrollably. I had only cried like that one time before, and it was at my Grandfather’s funeral. Now my seven-year-old little girl was about to meet God and walk with Him in a way that most people will never experience. I was scared for her, I was afraid for my family, and I knew I didn’t have the strength to fight this battle.
I don’t know how long I sat on the side of the road. But I knew I didn’t want to get back in that van. In that van lurked a major crisis that I was not equipped to handle. But I also knew my wife and daughter desperately needed me.
From the curb, I looked into Kathi’s eyes. They said it all: Hurt, scared, angry, and needing some strength.
Back in the van and driving home, I could hardly see the where I was going for the tears streaming down my face. Cars melded into each other. Two lanes became one. Grasping for anything I could get my hands on, I picked up a fast-food cup and slammed it against the windshield. Kathi gently touched my hand, and looked desperately into my shaking face. She knew.
Maggie sat quietly in the back seat – alone, knowing something was terribly wrong. I can only imagine what was going through her precious mind. Her “strength” and “care” were in the front seat falling apart in front of her.
None of us said much from the time we walked out of the doctor’s office until we got home. As I pulled up to the house and opened the garage door, the reality of what just happened was beginning to hit me. This crisis was now invading our home.
I walked in from the garage and saw our dear friend Connie at the back door watching our other three kids playing in the yard. Our eyes met as she turned around to look at me. My quivering lips and chin said it all. Her eyes closed and she shook her head in disbelief. “I’m so, so sorry,” she said. Then her own tears started as well.
Innocence was playing outside with no idea of the reality inside. Within several minutes, their world would turn upside down. Fear and the unknown would dominate much of their lives for the next three years. They would need me to be their anchor in this storm.
As I look back on it now, the time I spent sitting on the side of the road became my reality check about who God really was. He was All Good and Powerful before we stepped foot in that doctors office. Would He still be All Good and Powerful now that our daughter was facing death? Would I live out what I believed? Would my faith finally become real to me?
After getting home, Rob sat down with all four kids and told them what was going on. Dax asked “ Is Maggie going to be ok?” Rob said, “ I don’t know Dax. All I know is that Maggie is very, very sick and we are going to take care of her.”
Within 2 hours of being home, Denver Children’s Hospital called us and urged us to get to Denver immediately. We got in the car, not knowing if we were coming home with our little girl. After one of the doctors reviewed Maggie’s scans, they told us “ We don’t know what that is on the scan, but she doesn’t have a tumor and you need to go home and have a life.” The misdiagnoses continued, but as Maggie would tell us later, she knew the doctors were wrong but that she just needed to wait for them to figure it out.
Maggie’s symptoms continued to get worse, and three months later, Maggie was back at Denver Children’s Hospital having brain surgery, after the doctors finally acknowledged that they were wrong – they removed what they could, but six months later, the tumor was growing back and Maggie’s symptoms were returning. Chemo started a month after Maggie’s 8th birthday.
Now, this is Maggie and I 10 months later in the middle of chemo. After lots of screw-ups by doctors and one brain surgery. Little did we know that she would have 4 more to go. At this point, the adrenaline is gone, I’ve cried to where I can’t cry anymore, different people are watching my other three 3 kids daily, and Rob is working till 2:00 in the morning not able to keep up with work. I’m spending 3 – 4 days a week at the chemo clinic, and Zoe, my youngest is going in to hysterics every time someone even hints that they will be sick and throw-up.
When we are home, Maggie is throwing up or having seizures most of the time. I’m cleaning her up, injecting medicine in her port, doing laundry from all the throw-up during the night. When Rob and I would go to bed at night, we would just lay there – with absolutely nothing to say because we both knew where each other’s hearts were. We just needed to be.
This is reality. It is during this time that I desperately had to hold on to what I knew to be true – the things I said to Analise during our meeting were true and I meant them cognitively, but this is the point that it gets lived out and it didn’t look anything like I thought it would. It didn’t look spiritual, it didn’t look surreal. There was no miraculous healing of Maggie. I wasn’t walking around singing “What a Mighty God we Serve.”
I had to hold on to the fact that God was Good in the midst of this pit. I knew it because I had poured myself into Him earlier in life and I was now living from that well. I would go weeks and months and not read scripture. My prayer life would be considered a joke to most of you. My conversations with God, which is what they were, were around folding laundry and crying in to the pile of towels, crying out – that was my prayer life. Basically, my prayers were “ I believe – please help me in my unbelief” Other times, I would tell God that I knew Maggie was His and not ours, and I would beg if he was going to take her, to take her quickly.
I had to hold on to the fact that that God was going to protect Dax, my 10 year old son, as he was dealing with his own struggles. Dax used to be scared to walk in to Maggie’s room in the morning for feat of finding her dead. Maggie used to be his best friend. The Maggie that he used to know and play with is now gone. He is having to get to know this “new” Maggie and it is difficult for him.
I had to hold on the fact that death was not the worse thing that could happen to Maggie. You see, something happens to the core of your being when you sit by the bedside of your daughter, watching doctors and nurses come in, and they don’t know if she will wake up. Something happens to the core of your being when you’ve sent your daughter in for her 5th brain surgery and she wakes up in recovery having seizures. Something has happened when you have finally gotten to the point that you are praying that God either heal your daughter completely or take her home.
In the midst of all of this, God began to give us laughter and joy. It didn’t look like “The Joy of the Lord is my Strength.” It didn’t look like “ Count it all joy when you suffer.” It looked ordinary and very precious.
At the time Maggie was diagnosed, we had a two year-old and a three-year old. Why in the world would God give two babies to a family that was about to live life in a pit for the three years. Why? Because He knew that our family was about to live life in a pit for three years. We would need them. That their joy and laughter would bring a lightness to a somber time.
For example, Rob was putting Anna Kathryn and Zoe to bed one evening, gave them some Dimetapp because they were sneezy. Like a man typically does, he left the top off and put the bottle on their bed-side table. Now, what do you think a two year is going to do with that? The next morning, I’m in the hallway doing throw-up laundry and Zoe walks up to me with the “empty” Dimetapp bottle and says “ Can I have some more of this? It is for my babies? I drank it all and I need some for my babies?” I wanted to turn right back around and keep doing laundry and pretend that I had not even seen or heard that. After I came to my senses, I called my pediatrician who urged me to go to the hospital now. I run down stairs to tell Rob what has just occurred. And guess what? He’s on a conference call telling me “ I can’t hear you or talk to you, I’m on a call. I’ll be through in a few minutes.” I’m going half out of my mind. So, the person who left an open bottle of Dimetapp is at home on a conference call while I’m at the emergency room getting lectured by the doctors on child safety in the home, after spending the previous day at the chemo clinic. On the way home from the hospital, we pass by a WalGreens, and Zoe, who just drank a glass full of charcoal, asks if we can stop and get some more Dimetapp. The only thing I could do is laugh. God has a funny way of bringing humor in to the home, huh?
While Anna Kathryn and Zoe are entertaining us by diagnosing other kids in the neighborhood, checking each other for brain tumors, Rob and I lost ourselves in the wonderful world of DVD TV Shows: Alias and 24. We would stay up till 2:00 in the morning watching whole 4 TV shows at time. It was our escape and it was our time together. We paid for it dearly the next day, but we would put on another one the next night as soon as the last kid was put to bed.
It was during all of this, that something started happening to our family. We became content and ok with the life that God had given us. I even started calling Rob “Job” and our kids “Joblets”. We recognized it as our life, and a life that many folks at church would not understand, and we were and are ok with that. Instead of it driving a wedge in our marriage, we became closer and better friends than we had ever been. Maybe it had to do with the fact that our life was so different than everybody around us, that we only had each other. Through people being disappointed with us, thinking that we were not handling it right. People thinking that we should have the little ones in church every Sunday, and that we should be at church no matter what. Being misunderstood, we had no where to run, but to each other. And God used Maggie’s prolonged illness and the need to change our lifestyle in order to keep her well, to bond us.
Our family has been cared for and nurtured unlike anything I’ve ever seen or experienced before. People we had never met would drop groceries and money off at our door step. We would find checks in our mailbox. People would drop off meals in throw-away containers and insisted on not receiving a thank-you note. I cannot tell you how much pressure it takes off when people don’t expect a thank you note. A song was written, a cd produced, and thousands of dollars raised to help with rising medical expenses and Rob’s lost work. Sunday School teachers would come to our house during the week to teach our kids their Sunday School lesson. Our kids were being watched 3 – 4 days out of the week by many of you. One couple gave us some money and told us to go spend it on something totally unrelated to medical stuff or bills. As a result, we replaced two of our cloth chairs that were had been covered in vomit and gave Maggie a more comfortable place to rest during chemo. The Body of Christ cared for us, provided for us, prayed for us when we didn’t know how to pray for ourselves, and loved us for such a long time when we were not able to give anything in return.
As of our last trip to St. Louis Children’s Hospital 3 weeks ago, Maggie remains cancer free and the doctors are very impressed with Maggie’s progress so far. She’ll be in various therapies for years to come, but she is the happiest that we have seen in a long time. There is a look in her eyes that has not been there for a long time.
Being three years out now from Maggie’s diagnosis, we can look at the wonderful gift God gave us in Maggie’s prolonged illness. He has given Rob and I the ability to look in to each others eyes and not say a word, and simply know what is going on. There is a contentment and settledness with our family now, that wasn’t there before cancer came to live with us. God has cultivated a tremendous spirit of caring and empathy in the hearts of our children. Being around death and pain has been a tremendous blessing for our children. You see, pain and death are not the worse things that God could bring in to your family. They are, in fact, one of the best gifts that God could ever give you.
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