"But God is doing what is best"

You know God speaks to us in some of the most unexpected times in unexpected ways. Today started out to be a very bad day, and it was bad, but there have been some real points of beauty and wisdom as well.

This morning started as usual, until I went to get mom up. She had such a hard time yesterday. She went from walking in the office with me with assistance to barely able to walk inside the house and into the livingroom with Steve that night. Steve had noticed a big change in her so I knew it wasn't just me worrying too much. I had hoped a good nights sleep would do her good and we would wake up refreshed. I was very disappointed to say the least. She could barely make it out of bed and into the bathroom this morning. It took me over an hour just getting her up and ready. I even called the office in tears because I knew I had patients waiting and could not get mom to the car. Our wheelchair broke over the weekend and I sent it in for repairs and this was the day she couldn't hold herself up to walk across the room! Finally she made it to the bedroom door and I put her in the walker with a small seat and drug her around in it. I was so scared it would flip over since it is made to rest in, not ride in! But we made it in one piece, just very late. I worked for a few hours and mom slept most of the time in the recliner. She did crumple to the floor at one point and the nurses had to help her up. Finally, a loaner wheelchair arrived and I relaxed a little bit.

Things progressed throughout the day and I could tell how much mom had declined in just 24 hours. It is hard to believe and hard to go into all the details, but let's just say I had wanted it to be obvious when it was time to quiet fighting and call hospice and today it became pretty clear to me. That is where some of the beauty comes in. I had talked yesterday with the nurse practitioner at the NIH and they said to do emergency radiation. So then I talked with her primary doc and she consulted with the oncologist. They advised against the radiation based on several things. #1 the tumor did not respond well to radiation before and this leads them to believe it will not respond well now either. #2 We could limit her function much quicker by doing radiation and irritating the nerves, etc like the swelling occured in the brain. #3 The oncologist did not feel mom could handle the trips to LR everyday for radiation and would have to admit her to the hospital for treatments and he felt she would not ever leave the hospital. So, I think we all know she does not want to spend her last amount of time in a hospital if that can be helped and I agreed on the non-responding tumor theory (same cancer cells and all). Finally, I want her to be the best she can be for as long as she can be that way. So, we agreed to wait and see what the doc we say at NIH had to say after he got her spine MRI that I overnighted to him.

So, as I was getting in the car this afternoon to go to the hospital to check out the hospice unit while a friend stayed with mom, I just quickly prayed something like how can I do this. It is so hard. I then turned the car on and a beautiful song titled "I wish you were here" came on the radio. For some reason, I stopped to listen and the song went on and said something like: that is where you will find me, when I am finally free to walk the streets of gold and worship our creator. I cried. It is hard to think of the beauty of death when you are fighting so hard for life and I felt God gently nudging me to see things a little more like He sees them. So, I went on to visit the hospice unit and make an appointment to meet with them tomorrow.

As I was driving then the NIH nurse practitioner called and I was telling her all about mom and the decline. I told her we had decided not to radiate the spine and the reasons and that I did not think mom could make the trip to Maryland now. She said she had just spoken with mom's doc and he had reviewed her MRI films. She reported that he too felt that comfort care was in order at this point. I felt this was confirmation for me since they are very aggressive in treating this.

Finally, I was picking Sarah up from practice and began gently telling her about her Mor-Mor and how she was not doing very well. I said you know honey, she may not be with us very much longer. She replied that Mor-Mor would always be with us even in Heaven. I sort of thought this was typical thinking for a kid and went on with the conversation. The she stopped my explainations and said, "But God is doing what is best." I was speechless. This little 6 year old but into words so matter of factly what is the truth. I felt like it was God talking to me directly and saying that He loves mom even more than me and cares more for her than I ever could. He has her in mind and is watching over her very closely even in this very dark moment.

So to say the least, I have cried a lot today and probably will for the next several days or weeks, but God has spoken ever so softly, but clearly. Whatever happens is in His hands and that makes this easier. I am still praying for that miracle and thank everyone of you that are standing in the gap for mom. I feel like you are holding our arms up during the battle. I know it must be hard and I appreciate every single prayer. I don't hear them but they are beautiful to the God who does. He has not forgotten us at all.

Someone wanted to see the pictures. They are on www.fayesupdate.shutterfly.com password God's child (case and space sensitive). I tried to remove the password function, but have not gone back to make sure yet, so you may still need it.

I know tonight's blog is really, really long but I also want to share a poem I found on the web. I hope the credit is right and the words are really his because it came off a cancer message board and this lady found it on a 7th grade girls website that also has a glioblastoma brain tumor. It is written more for a child I think, but remember, mom too was a baby brought into this world by loving parents. It has really helped me see the beauty surrounding me and I hope it helps some of you with your own pain as well.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.