Thoughts, thoughts and more thoughts...

We have been absent from the blog. Absent because it was hard to share what we were feeling. Absent because we have not known what or how to share. Over the next few days we will try and catch you up. And probably, though no promises, bring you on the last steps of this journey with us. Right now we will jump back about a week. As Frances was coming to terms with her thoughts, she wrote the following around the end of June. As you read this, keep in mind that she writes with a computer controlled by her eyes, clicking on each letter individually by blinking. A LOT of thought and time went into this. Hopefully it will help you understand how she came to this decision. Hopefully it will help you:

I spend a lot of time thinking about my life and my death. I am in a weird place. The only reason that I am alive is because of life support machines. I am secure in my faith. There was a time in college when I accepted Christ's death on the cross and the blood he shed as an atonement for my sin and I asked the Holy Spirit into my heart to work within me to guide me in the ways of God. I know that when my earthly body dies, I will be with Jesus and that will be in heaven. I can in effect choose when I want this body to die and get a new pain free body in heaven. But that is a difficult choice to make. There is a kind of constant turmoil in my heart and in my mind. When have I given my family enough of me? When have I endured enough pain? When is my job here on earth finished? What else do I need to do? What other life do I need to touch? When is the time that Jesus is calling me home?

I grieve over the milestones and such that the girls will not have Mommy with them. I wonder who will take my place when they get married, since no one is supposed to be seated after the mother of the bride has been seated and who will determine when to stand and when to sit since the people follow the mother of the bride. I wonder if I have passed this nasty disease's gene to either of my girls. And if so will there be a cure before they are diagnosed with it. And will they choose to be tested for the gene mutation before deciding to have children of their own.

Often it seems that the girls only come in to see me when they are told to and the adults only when they have to. Meanwhile the world and in many ways my family continues to go on with their lives. How much am I holding them back by continuing to live? At what point am I being a disservice?

So often I am left to my own thoughts and so often my eyes well up with tears and I can do nothing about it on my own.


Some of you may be wondering how I can be so sure. Let me tell you. I believe in the Bible and I see it as truth, I see it as applicable today and for many tomorrows.

"Whoever believes in the Son has eternal life, but whoever rejects the Son will not see life, for God's wrath remains on him." John 3:36 (NIV) I do believe in Jesus Christ, God's son, therefore I will have eternal life.

"Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house there are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." John 14:1-3 (NIV) Jesus has promised that he is making a place for me in heaven. What a wonderful thing to contemplate!

"Yet to all who received him, to those who believed in his name, he gave the right to be children of God - children born not of natural descent, nor of human decision or a husband's will, but born of God." John 1:12-13 (NIV) God is my father, but he does not take the place of my earthly father and they can both be called Daddy. Wow!

"Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5-6 (NIV) When I trust in Jesus he will show me which way to go. There have been many times that he has guided me and at least once save my life. Quite a few years ago when we lived in Ohio, we took a trip to Watkins Glen, New York on our motorcycles for a rally. It was a long drive mostly on freeways and the last thirty miles or so on twisty backroads. Scott liked to take the twisty roads a little faster than I, so would be a little ahead of me. As I was driving through the corners, I started to feel that something was wrong with the shock. I might have figured that we could look at it when we got to camp where we knew there would be a repair shop, but i could tell that God was telling me that I needed to stop quickly to see what the problem was. So I told Scott that something was wrong and I needed to stop and check it out. He found a nice gravel lot and stopped and in a few minutes I pulled up next to him and turned the bike off. As soon as I got off the bike and took weight off the bike the bike fell onto the back wheel and the shock fell to the ground. The eye bolts were still connected to the bike but the main part of the shock was sheered off at both ends. Had I not stopped, it could have come out and probably caused me to crash and injured me or killed me. I thank God for his guidance.

"This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved him, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another." 1 John 4:9-11 (NIV) God loved me well before I was even born. I try to follow Christ's example by loving those around me. I am not perfect and do not always do the things I am supposed to do. Most importantly Christ took all of my sins on himself when he died on the cross. He paid the penalty for my sins. There is no greater love than that.

You may find this amazing; God loves you no matter how many sins you have committed or how long you have turned your back on him or how unworthy you feel. If you believe in Christ and the sacrifice he made on the cross for you and for me, then you can ask Jesus to be with you and ask him to forgive you for your sins and thank him for paying the price for your sins and ask the Holy Spirit to come into your heart to guide you for the rest of your life.

Here is a simple prayer that you may use. "Dear Heavenly Father, I believe in your Son Jesus Christ. I am thankful for him having paid the price for my sins on the cross. Please send the Holy Spirit to dwell in my heart to guide me. I love you God. Amen" If you have said that prayer, the best way to get to know God is by reading his word, the Bible (I would start with Matthew), and attending a church regularly. Tell any Christian friends about your commitment to God and let them be excited with you. May you find peace from your Heavenly Father and joy for a lifetime of learning about God and his promises.

If this has made a difference in your life, we would love to hear about it! Following are some additional verses that are meaningful to me.

Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new. 2 Corinthians 5:17 (NIV)

Whoever believes in the Son has eternal life, but whoever rejects the Son will not see life, for God's wrath remains on him. John 3:36 (NIV)

Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and thieves do not break in and steal. For where your treasure is, there your heart will be also. Matthew 6:19-21 (NIV)

Now it is God who makes both us and you stand firm in Christ. He anointed us, set his seal of ownership on us, and put his Spirit in us as a deposit, guaranteeing what is to come. 2 Corinthians 1:21-22 (NIV)

Let us not become weary in doing good, for at the proper time we will reap a harvest, if we do not give up. Galatians 6:9 (NIV)

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 (NIV)

Do not judge, and you will not be judged. Do not condemn, and you will not be condemned. Forgive, and you will be forgiven. Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you. Luke 6:37-38 (NIV)

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7 (NIV)