July 27, 2001

Obviously, there aren't many medical changes since my last update was about my childhood memories* instead of Levi. But actually it was a little bit about him. That whole thought about memories started because I had a few minutes to complete some thoughts. I wonder… if the smell of corn on the cob reminds me of all that wonderful time in my life, what will this hard time smell like in the years to come?

Lately, I have been going through a time of despair. I know that this should be a time of relaxing since his symptoms are not worsening. But, we went to the mountains last week and the change of scenery opened my mind up to what is really going on inside my heart. When we're home in the busy-ness of life it's easier to hide my "stuff". When I feel angry, frustrated, confused, anxious, fearful, guilty, resentful, rage, despair… I shove it back deep inside where it came from. I don't have time for them. I'm very busy trying to be normal. In the mornings I would take the (big) boys to a day camp. The drive home was about 35 minutes of solitude. I would just drive and think and cry and drive and think and cry… I had to deal with all the emotions inside… Memories. I remember my childhood and the purity of it. Then I wonder about my children and what they will remember. What will become of them? Will they live that long? Or will I bury one of them before they have a chance to make many memories? When I watch them sleep I cry because they are so peaceful. They are so beautiful. I wonder if there is anything more wonderful than knowing that they are safe and warm and resting. Then a new thing comes into my mind. Something that I never thought of "before". The best thing about watching my children sleep is the hope that they will wake up. My mind makes me think about the possibility of them not waking.... I know that's so depressing, but what can I say — that's how I think these days.

Then I make myself stop. Okay, there are hard things in life but let's focus, Jami. From whom does our hope come? Jesus. Okay. Regroup… His promises are worth lifting my head to look at. I must pick myself up by the bootstraps and praise Him. I must choose to swing the pendulum of my emotions to the side of hope rather than despair. I will sing for joy at the work of His hand. I must turn my eyes to him and let the things of this world dim in the light of His glory. Remember, He will never leave me or forsake me. His promises are eternal and cannot be taken. Even death has nothing on us. You are God, you are life and I will worship you forever. Into your hands I will commit myself, my family, my children. You knew them when they took their first breath and you know the day they will take their last. You are life. I will plant my feet on you, my Rock. Today, I choose you and your promises. But, tomorrow is coming Lord, please help me to choose you again. You know me and how I tend to concentrate on the negative. Balance me, anchor me. Just hold me.

I know that I might share too much of my heart and soul. I realize you might be thinking, "Why does she always bleed on me?" But please indulge me, it's therapeudic for me. Thanks for listening.

If you haven't noticed I love a good "quote" to sum up a thought! Well, I've been making up my own along the journey. Here's one that I realy like. "Life is not about BEING the person God has called you to be. It's about BECOMING the person God has called you to be." So, bear with me… I'm know I'm far from "being" but I am busy "becoming."

~jami~

* Ed. note: Since this did not seem to be a real "update" it appears as a separate page: "Thoughts from Jami"

July 14, 2001

Well, here I am again, I have brought myself here to this computer about 20 times in the last 2 weeks to give an update, but to no avail, I am completely speechless. I have never seen love like we have experienced. Father, somehow give me the words to express our gratefulness adequately.

My first thought is to mention everyone's name that has given so graciously their time, love and passion. But then I feel so overwhelmed I want to give up. So, I will focus on one today. The giver of all gifts, the creator of kindness, the one who has waited and still waits to bless without measure. The one who knows the depth of depravity in my heart but is still bent on giving me everything He has to give.

I keep a journal of the lives of my children. It's nothing glamorous, it's just a bunch of spiral notebooks tattered and torn dripping magic marker on the front with the words "Love Letters". One night I was crying because I just loved my children so much I didn't know what to do with it. I felt so unqualified to be trusted with the hearts and souls of these eternal beings. What if something happened to me? What if I died before they were old enough to know how much I loved them? Out of that dark night was born the book of "Love Letters" I started out with telling them how we came up with their names so that they would know that they were set apart from the beginning. God specifically gave us their names. Joshua Caleb (To enter Gods promised land because of his faithfulness) Samuel Jonah (A strong prophet and an evangelist {Jonah actually means dove}). Anna Grace (Anna (in scripture) was a woman who prayed and fasted in the temple until she died) and Grace for what God has drenched us in) They have become their names and we are eager to see how He unfolds the rest of their lives. Right now we are watching Levi become his name. David Levi (a king and a priest). We were at church having Levi dedicated when a friend (A godly woman named Jacque Tyre) came up to us and told us that God had a "special" plan for Levi. That was nice but she went on. With deep conviction in her eyes she said, "Did you know that the two names David and Levi together mean 'to praise God with his life, TO DRAW OTHERS TO GOD'.

At that moment we knew there was a plan just like there is for our other children but we were thinking that it would be when they were older. The more I see God work the more I want to be right in the middle of what He is doing. Don't you? The more I look back at my life and the lives of others I see His hand not to be mistaken for coincidence or mere fate or good karma …The Lord God Almighty is with us. Let the records show that we acknowledge the One true God, The God of the Bible, The Lord Jesus Christ to be the author of all good things. He is all that my heart can live for. As I focus on His character I become dizzy. Which way should I go to praise Him? Should I praise him for allowing us to feel his presence through our despair, I mean He promised He would always be with us, never forsaking us but He never promised us we would FEEL His presence, that's icing on the cake. Should we praise Him for keeping our hearts in pursuit of Him? Because we can receive no glory for that, we depend on Him to give us the desire to know Him. Should we praise Him for a tumor in the center of Levi's brain? Do we dare praise Him for the dread of every mother from the day a child is conceived? I do! I worship Him now because He is ever working in my heart. I praise Him because He has chosen the lowly (of which I am one) to be immersed in love and kindness. I am worthy of no such thing. I praise Him because I have had the honor of seeing Him in the faces of my friends and family.

While I was at the concert last night, drenched in His presence I was thinking, "this is the gospel" A gospel of high proportion, more real than I have ever heard or seen or felt. Saint Frances of Assisi said "Preach the gospel at all times. If necessary use words" Last night we saw it in the lives of Facing East, Allen, Bebo and Dicky We also had the privilege of hearing the best that words had to offer. A brilliant display of mental pictures that helped my feeble and inadequate mind to "see" Him in an even deeper and more personal way. The more we drink from the "bucket" of God the more we want. I left thirsty for more of Him last night. May it always be so …He has shown Himself alive, He speaks to us, He runs after us, His hands lay hold of me…

~jeff and jami~

p.s. If you missed the concert I am sooooo sorry. But if the chance ever arises again don't miss it. You'll be blessed. I promise.

July 2, 2001

It's 11:30 at night. Everyone is sleeping. I was just thinking how the Lord gave me a gift tonight that most people might not appreciate as much as I do. Tonight, I had a "NORMAL" thing happen. Levi wanted to sleep in his room tonight. He hasn't done that since he was diagnosed. I walked him up to his room, (just like I used to). I tucked him in and we prayed together, (just like we used to). I started to walk out of the room, (just like I used to). He said, "Mom, will you sing some songs?" (Just like he used to). One thing was different. ~ ME! ~ I used to hate when he asked me to sing. That may seem harsh but since I have 4 to tuck in, pray for, love on and talk to about the issues of the day.... extra curricular night time activity is not good. Especially with Levi. He would hold his chubby finger up in front of his face and say just one song mom. So, I would sing one song. Then I would start to leave the room and he would start to cry and say noooo, that wasn't the song I wanted. So, I would sing another song. Again, it wasn't the song he wanted to hear... It took around 45 minutes and 10 songs to get him to sleep. When he was sick, I would have given just about anything to hear him say, "mom, will you sing just one song?" It's been a long time, but tonight, June 30, 2001 I heard those words I longed to hear again. It was BEAUTIFUL.. I would have sung to him all night long but he fell asleep after only 2 songs. ~~ Lord, help me to appreciate the little everyday things more. I know (now) that they aren't "everyday" for long.~~

~jami~

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