The post below from 11 years ago came up today on my Facebook page. It serves to remind me of a most desperate time in our family’s lives when our youngest son was facing serious health issues caused by Inflammatory Bowel Disease. This was only the first of life threatening events he would face over the next 11 years. Almost one year later to the date he nearly bled to death after a procedure where an arterial vein was accidentally clipped.
My heart begins to beat faster as I read my thoughts from 2013 and I relive the horror of those days. How could someone so young, become so ill, so quickly? It is IBD, and the myriad of other complications and chronic health conditions that sometimes accompany it, and tragically IBD has no cure.
For my son, it is accompanied by auto-immune pancreatitis, which has led to diabetes; the steroids that he has been given over the years to control inflammation have led to bone deterioration; the five different immune suppressing drugs he has worked his way through can all have horrible side effects including cancer. Three of these drugs proved ineffective, one he had an extreme allergic reaction to and we are praying the current one will show some effectiveness.
Eleven years, and sometimes I still think that “from this side it looks like nothing is happening”… He has been hospitalized annually for months at time, with bowel obstructions, bleeding, inflammation, pancreatitis, and sepsis. I have worried, fretted, prayed and pleaded with God. Some days I think he has closed his ears to my prayers.
I think those things, but I don’t believe they are true. I remember examples in the bible of men, men like David, Job and Paul, all men whom God loved and men who honored and loved God; yet they still suffered. Even, after all these years, I still believe God is in control and he has a plan for my son’s life.
May 19 was World IBD Day. It is a day set aside to bring awareness about IBD and to support the 10 million people worldwide that live with this disease. I will continue to pray. I pray for a cure. A cure so no one has to suffer any longer.
June 6, 2013 – For the past few days sitting quietly contemplating the events of the past two weeks, I have tried fitting the pieces into place. Where the huge decision we faced two weeks ago was to commit to the Remicade treatment. How insignificant that decision seems now. Only three days later Josh was facing major surgery and a few days after that a second surgery and then third surgery to control bleeding – to the point his life was in the balance.
When the bleeding started again three days later Josh again was rushed to ICU. There nurse Steve was methodically checking drains, monitoring his heart rate, drawing blood. Inside I was panicking, remembering Friday evening, wondering why they weren’t starting the transfusions because Friday it had taken so long to get the blood it seemed life was ticking away.
I, trying to remain calm, said to Steve, “you know from this side it looks like nothing is happening.”
He reassured me. He said that they had Josh’s blood type on hand, that if he needed they could get it within minutes, that they want to check the hematocrit levels, monitoring the rate of output on the drains, access whether the bleeding was slowing — do things carefully and in timely manner. Make sure every decision is based on the least risk to Josh’s health. In the end, they did give Josh more plasma and blood; and with that the bleeding stopped.
So I’m here thinking about all of these things and I hear my words to Steve: “From this side it looks like nothing is happening.”
I think sometimes I do the same thing with God. I pray about situations, the future, what God’s plans are for my life and sometimes from this side it appears nothing’s is happening; but I understand that even though it appears that nothing is happening, God is in control. He knows all the details of our lives. He knows all the pieces that must fit together perfectly. He knows when we need life sustaining blood and when more extreme intervention is needed. He also knows when we just need to wait as he watches our vitals, checks where we are losing strength and then he refills us.