October 29, 2001

The other day I was driving through a wealthy neighborhood, I noticed how many gazebos, benches, hammocks, swings, big beautiful trees to sit under there were, things I call "memory makers". But nobody was out there. There were no children sitting on benches with their dads. There were no mommies reading to little ones under trees and on hammocks. Such possibilities. So many life changing talks waiting to be had. So many missed opportunities. I know why. All the mommies and daddies are waiting for the perfect moment to go out to the bench, hammock, swing to just "be" with their children. But the demands of life are too strong and perfect moments are too hard to find. I am learning from empty gazebos. When I see a place that could be a memory, a moment of life changing proportion I am going to stop and get in it, sit on it, swing on it, sit under it and just "be". You know why? Because I can.

About a week ago Levi and I were driving along the road. He started crying from the back seat. I said, "Levi, what's wrong?" He said in a whimper, "I just need to hug you" (sweet, precious little man of mine). I pulled over in a neighborhood and parked on the side of the street and got out of the car, opened his door and we hugged. Cars drove by and people stared, they slowed down and tried to figure out what I was doing. But we were busy. We were making a memory. It was beautiful. I almost missed it because we were so close to home. I almost said "can you just wait until we get home?" But that would have been a big mistake because those kind of moments don't wait. You have to grab them while you can. Now, every time we drive by that neighborhood he yells out "hey, that's where we hugged, that's where you stopped and hugged me!"

Just 7 months ago Levi was perfectly healthy as far as we knew and if he had cried and said "I just want to hug you" I probably would have been more "practical" and said, just wait a few more streets until we get home and then I'll hug you. But not now—I know that we might not make it to the next street so we stop right away. Not just for Levi but Caleb, Jonah and Graci too. Isn't that who Jesus was? Didn't he stop at any given moment to "be" with people? His disciples probably thought it would have been more practical to wait until the time was more "appropriate." But not my Jesus, no, right away was good for Him. He didn't want to miss the moment. And neither do I.

A PAINFUL CONVERSATION SHOWS THAT I MISSED A FEW MOMENTS ALONG THE WAY:

Caleb - "I wish Levi didn't have a brain tumor."
Me - "Me too, what are your reasons for saying that?" (I was just wanting to see his heart, not knowing what I would see.)
Caleb - "Well, I'm tired of seeing Levi hurting and I don't want him to have cancer anymore. And so you would love me more again."
Me - Painful silence.

We talked more about it later and I reassured him that my love for him had not changed. But you know what? All he knew is that most of my attention goes to caring for Levi and he felt left out. You know what's worse that someone being "dis"enchanted with you? Someone that is "un"enchanted with you. And I think that's what he felt. I was just too busy to show them that they are so "cool" to me. We have made some changes around here, good ones. Our house is a little messier (okay, alot) and we're late alot. But we're feeling alot more loved lately.

October 22, 2001

I know it hasn't been that long since the last update but I feel like the last one was such a downer I had to tell you something good. On Thursday I talked to the doctor to find out what I should do about the broviac not working properly. She called back and left a message saying I needed to take Levi to the emergency room to get it looked at and possibly have a new line put in. The thought of that overwhelmed me so much that I went outside, laid out a blanket in the front yard and laid down with Levi and Graci and just acted like nothing was said. I stayed there for about 4 hours. I kept thinking, "I really need to go to the emergency room." I couldn't imagine putting Levi through another 7 hour day in the emergency room. I prayed: Lord, you say in your word that your mercies are new every morning. But I kinda feel like it's the same ol' thing the last few days. I can hardly hold my head up. Oh Lord, please show me your mercies anew, I need it so bad.

Later that day we talked to a nurse who told us to try a new way to get the blood out. It worked!!! I have never been so excited to see blood!!! The next day was definitely full of His mercies... Levi woke up with more energy than usual, the lab work went smoothly, I got flowers from my friend (Leslie Johnson) the card read, "To cheer you, even a warrior needs a lift" It was as if it was from the Lord Himself. I also got an e-mail from a lady whose mother was getting treatment in Houston with us. She had gone through a really bad time when they didn't think she was going to make it. But now she is continuously getting better and stronger. Then I got a card from my sister-in-law, Betsy. On the card she wrote this verse: "The Lord longs to be gracious to you and waits on high to have compassion on you... blessed are all those who long for Him." Isaiah 30:18 The whole day was filled with little "acts of love" from my Heavenly Father. So blatantly from Him. I could never deny that He is active and working in my life. His mercies are new every morning. It's as if He lets me feel the pressures of my circumstances so tightly only to push me to cry out to Him for help so that He can shower us with His blessings. He has shown Himself to be personal and active and so faithful. Who could deny His goodness? Who could deny that He is a God that acts on behalf of His people?

"...and for this reason I kneel before the Fatherland pray that you, through our lives, would be able 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... To Him who is able to do immeasurably more than all we ask or imagine... to Him be glory in Christ Jesus throughout all generations, for ever and ever!

Thank you all so much for going to the throne of grace on our behalf. We felt it like you would not believe. Blessings to you.

jeff and jami

October 18, 2001

On Monday the 15th we had a rough day. The whole night Levi was frustrated. When I would stand him up to go to the bathroom he couldn't stand. He has been having trouble for a while. But it was different; it was much, much worse. He would put his left leg down and fall, immediately. It was completely useless. When we got up in the morning he was really slurring his words badly. I couldn't understand anything he was saying. Somewhere around 10:30 am he started saying he had a headache. Usually when he has headaches they only last a few minutes and then they're gone. But this time it lasted more than an hour and he was wrenched in pain, he wouldn't even touch his head. I made a few calls and started packing us a bag just in case we had to stay the night. I must admit at this point I was wondering if we'd ever leave the hospital. He had gotten so much worse overnight. I was afraid of what the day would hold for us. Jeff came home and we went to the emergency room.

We had a CT scan which showed nothing had changed. Then we had blood work done to see if maybe his electrolytes were off balance and causing this. But the results came back normal. This was good, but a mystery as to why his symptoms were worsening so rapidly. The next day we talked to the doctors at the clinic in Houston and found some answers. According to them the tumor was breaking down. When it breaks down it causes swelling which causes pressure. We had to up the decadron (steroids) a little to keep the swelling down so that he could tolerate a higher dose of the treatment. They told us before this that he would get worse before he got better. But at this rate I wonder if he'll ever get to the "better" part. He is very frustrated and even angry right now. He has to say things 3, 4 even 5 times before we can understand what he's trying to say. He often asks when he's "gonna get better" He is getting so tired of it all. It's so hard to watch him be so frustrated and not be able to help him.

We are so incredibly weary of the constancy of it. With every day there seems to be a new battle. Yesterday we couldn't get any blood out of his broviac. I tried for an hour or more. But nothing. Then, I had a nurse come over and "poke" him but he's so swollen from the steroids she couldn't get a vein; she tried his arms and feet – but nothing. Today, I have to make mega phone calls to find out what my next move is. I'm drowning in my "to do" list. I am so overwhelmed today. Oh Lord, How much longer? We're so tired. We did get a catheter for Levi so that we wouldn't be getting up every hour in the night. But last night it leaked and we were up all night anyway.

So, now you know why this is such a depressing update, I'm running on empty in the sleep area. Yesterday the verse I was clinging to was: Isaiah:64:4; "Since ancient times no one has heard, no ear has perceived, no eye has seen any God besides you, who acts on behalf of those who wait for Him." I really love that description of Him. We are trusting that even in the small everyday battles that we face He is refining us and strengthening us. The verse I will claim today is: Ps 94:18&19, (this is good) "When I said, 'My foot is slipping, ' your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul." Please pray for our whole family, we're really at a "low point" today. Thank you. We love you.

jeff and jami

October 12, 2001

The MRI was Wednesday. The tumor is basically the same size, maybe a tad bigger the radiologist said. That was good news to us. His symptoms are basically the same. He is just so heavy (he is 60 lbs now). He is in a wheelchair now because he can only walk a few steps (very wobbly steps) before he is exhausted.

We have had a few "setbacks in hope" in the last few weeks. The neurosurgeon told me that we needed to decide if (in an emergency situation) we want to have a shunt put in or not. In other words: Do we want to just cut to the chase and let the inevitable (death) happen sooner since a shunt will only buy time. When he said that I was shocked. I couldn't believe we were at this point of decision making. My feelings toward God were "Okay Lord, you can step in at any time now." Sometimes I feel like I am crying tears of blood because they come from so deep within my soul. It's funny, I used to complain to Jeff about how crazy my life was. I would say, "we need a million dollar life insurance policy for me because if anything ever happened to me you'd have to hire about 50 people to do all I do around here." Now the list of things "to do" is a mere shadow of the new one. But I have discovered that there is something far worse than too much to do… not enough to do. I sometimes say to Jeff, "You know I think I would be a really great mom if it weren't for all these kids and their needs." Ha ha ha ha. But that's not funny anymore.

In this last 2 or 3 weeks the Lord and I have had long conversations. Some good and some bad. But He has heard me and comforted me. His grace has come to me in waves. I'll have 2 or 3 days when I feel as if my heart will burst from the pain. During those days I blindly pursue Him and His word because I need His promises to get through the day. Then, the next 2 or 3 days I feel the burden lifted from me. At that point I have a new understanding of Matthew 11:28-30 "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls. For my yoke is easy and my burden is light." Sometimes I turn to Him and learn from Him because He is definitely teaching. Other times I turn my head like a rebellious child as if to say, "I don't like you and what you're teaching, your ways are too hard. How could You let me see this happen to my baby? How could You?…I bury my face in the carpet and cry. I don't want His comfort, I want to wallow in my anger and sorrow… but His words come to me and comfort me anyway… "Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed. Says the Lord who has compassion for you." (Isaiah 54:10). Our mountains are being shaken. And we will choose His unfailing love, His covenant of peace. "He knows the way that I take; when he has tested me, I will come forth as gold. My feet have closely followed His steps; I have kept to his way without turning aside. I have not departed from the commands of his lips; I have treasured the words of his mouth more than my daily bread" (Job 23:10-12). Lord, let this be true of me. Forgive my childish ways. Give me the strength to grit my teeth and clench my fist in the face of adversity. To stand firm in You… "Because the Sovereign Lord helps me, I will not be disgraced, Therefore have I set my face like flint, and I know I will not be put to shame. He who vindicates me is near." (Isaiah 50:7). Lord, let my love and faithfulness to you be in all circumstances, not just the blessings. Let me always "…look to You, the rock from which I was cut" (Isaiah 51:1)

A SWEET THING: Caleb's football coaches gave Levi a jersey (#17). Then, they had their team huddle around him. One of the dad/coaches prayed a powerful prayer for him. Then, all the boys lined up and Levi rolled in his wheelchair and gave them "high fives". Then, Monday at practice Frank and Steve (the coaches) brought #17 stickers to put on the back of each of the guys helmets. What a precious way to honor Levi. We are so grateful to the Lord for giving Caleb such special coaches.

jeff and jami

October 3, 2001

We had a little "bump in the road" yesterday. Levi was having a bad headache all day. When I took him to the doctor his vital signs were bad. His blood pressure was 122/90, his respirations were 52. When Jan (doctor/friend) checked his eyes she could tell that there was pressure in his brain. So, we went to the hospital to get an emergency CT scan and an X-ray. Jan and I were thinking that maybe I had come down on the steroids a little too quickly and it was causing this reaction. He also has a cold so the combination could cause swelling in his brain. I was really nervous because he was drooling and slurring his words, he was falling a lot and his left hand was hurting now because it was drawing up so tight. But the CT scan didn't show any acute change, the chest X-ray was good and the blood work was normal. What a relief! So, now we're just working on getting rid of the cold and we'll have to up the steroids again. We'll schedule the MRI a little earlier than originally planned. So, it will probably be sometime next week. …yesterday constituted a bad day…

But, the really cool thing was this: before any of this happened yesterday I called my Mom and asked if she could come help me because I felt overwhelmed with it all. She came over right away (I have an awesome Mom) and hung out with the kids so that I could workout (relieve stress). When I run I listen to praise music so that I can "focus" on eternal things. Well, it was the best run I've had in a long time. But more importantly it was a great time with Jesus. He clarified some things I had been praying for guidance on and he just loved on me. I felt like He was preparing me for something. I even thought "Wow, I wonder what is going to happen soon that the Lord is giving me such a huge measure of faith and comfort?" I was totally overwhelmed with the knowledge that He is in control and that His ways are good and with purpose. I was thinking, after my time with Him…

1. How addicted I am to His word; He gives me a "high" (something that gives such pleasure is usually sinful in our worldly ways, but not Him, He gives a pure and clean pleasure with no guilt).
2. How I depend on Him to get me through the day and He is never intimidated by the depth, width and length of my cavern of need.
3. How I get up in the morning in great anticipation to what He will be talking to me about that day
4. I am a willing prisoner to His Love, His bondservant (yet I've never been more free); like the woman at the well, He confronts me with the sins of my heart but loves me anyway and even gives me honor and dignity in His confrontation; His ways are gentle and kind, not harsh and hateful as the world thinks.
5. Where would we be without Him? Nothing could ever compare to the promises we have in Him. My soul is satisfied as with the richest of foods; with singing lips my mouth will praise Him (Psalm 63:5).
6. His desire, in our "storm" is to sanctify us, not to sink us.
7. In the last 6 months we have learned this to be true:"Jesus is all we have, He is all we need and all we want. We are shipwrecked on God and stranded on His omnipotence." (Vance Havner)

I know this was just a blob of unorganized thoughts but I hope somewhere in there you were blessed by His ways. It was my intent to give you a little glimpse of how He "is" in dark valleys. So that if you are ever afraid of the valleys that lay ahead, afraid that you couldn't handle it, you will be comforted in knowing that He is handling it. He has not left us or forsaken us. He has blessed us. He is working out His perfect plan in us. He is molding us into His image. He is still good, He is helping us to see His bigger picture …and it's big — really, really, really big.

jeff and jami

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