Wednesday, February 24, 2010

Its been a while since I have written. My silence in part has been due to just waiting. Seems a little odd to be telling the world about a great miracle and following that by sharing the reality of life in the shadow of that miracle. The miracle of a shrinking tumor...truly a miracle. But honestly not quite the miracle it was perceived to be. For some, it was the reigniting of the hope that perhaps this boy who we all love so deeply might be spared from the ravishing of this disease. Even for me, that hope lives on. I believe My God is able to completely heal this precious boy. I know without a doubt that he can. I also know that he may choose not to. And in that I feel spurred on to a deeper hope. One that is accompanied by a peace that passes understanding. A hope in eternity. A hope that holds me steadfast to my Savior by the declaration that says, " Though He may slay me, yet, will I trust him." (Job 13:15)

The real miracle to me the day the doctor handed me the scans and said "I have no explanation" was not that the tumor was shrinking but that the God of the universe would be so merciful to us and would grant us such tender love. He didn't ask me to withhold treatment. He didn't make me have to live in that moment knowing that I might be withholding something that would prolong his life. The Lord simply had asked me to give him back HIS child. He told me to trust Him. And to leave the outcome in his hands. And he surprised me.

The reality, though, is that Jonathan's condition is not really based on what the tumor does or doesn't do. The reality is that his brain has been severely damaged. It doesn't function right. Living with the reality of a broken brain is actually quite tough. For everyone.

Things are changing. The past couple of weeks have taken their toll. Raging has become a daily if not many times a day event. Jon just can't cope with life. Medication is not working anymore. Everything feels turned upside down. And everything and everyone is stretched to a breaking point.

Maybe he is just sick and its throwing him off. Maybe he just needs some good antibiotics and he will calm back down. But maybe this is becoming a new normal. Maybe this is a sign that something else is wrong. I don't know.

What I do know is that whatever it is, it has caused us to once again look into the unknown and prepare for what could be coming. For me, it is the knowledge that I can not control what is happening. Knowing that once I make that phone call for help, I am no longer in control. Knowing that in the near future I may be faced with letting go of Jon so he can get help kills me. Its not normal. Its not ok. But it is how it is. And I know that God is in control.

1 comment:

Kristy said...

Love you sweet friend and your precious family. Your faith is comforting and encouraging to me. I pray for you, as a mama today. You are a beautiful, loving mama that I am so blessed to call my friend. :)