Part I of a two-part post from Ron:
Well, it St Patrick’s Day, and I can honestly say we have one strong paddy lying in the PICU at Johns Hopkins. Tyler is an astonishing individual who has overcome insurmountable health crises since he began his cancer journey in early September 2011. I remember the joy and excitement Dianne and I felt after Tyler’s bone marrow transplant (BMT) was completed. It was such a relief to be on the other side of the BMT. Four and a half months of on and off chemotherapy and all the health ramifications associated with cancer treatment were finally behind us. We were so thankful to God that we made it this far and that we were getting our healthy son back. Yes, there were always thoughts of the inconvenience of all the required outpatient follow-up appointments and having to relocate to the city post BMT, but we assumed our son would be with us and we could all get back to some level of normalcy in our lives; that was enough for us to celebrate.
If you have been following CaringBridge and all the wonderful journal updates from Dianne, you know that we didn’t even come close to that assumption. Tyler has been in the PICU fighting for his life every day for 5 weeks. What started out as mild veno-occlusive disorder (VOD) and mild/moderate hypotension quickly cascaded into life threatening renal, hepatic, and respiratory failure. If you are like me and most men I know, you skim over e-mails, posts, articles, updates, etc., without really grasping the entire meaning, spiritual, or emotional content. Please go back and read the journal updates in their entirety; believe me, it’s well worth it. Rarely do I post on CaringBridge due to the fact that my lovely wife does such an excellent job updating everyone. However, today and tomorrow I feel compelled to write about my experiences over the last 5 weeks and particularly the events that happened on March 15th/16th.
I have been watching my son deteriorate before my very eyes for some time now. I have had to deny him water when he was begging me for just a sip of liquid. I have had to watch him hallucinate while under severe sedation. I’ve watched his already depleted body turn to frailty, then turn diseased, all along praying that God heals my son.
I started out thanking God for the technology of the ventilator that is keeping my son breathing, and the dialysis machine that is pulling the fluid overload off my son’s body due to his kidneys malfunctioning. I started out trusting the skilled staff working with Tyler and found comfort in having my son cared for at a prestigious institution like Johns Hopkins.
So when Tyler’s treatment team pulled us into a room on 2/15/12 and stated that he would most likely not live through the weekend, I believed them, while praying harder for God to heal my son. The first time Tyler’s blood pressure dropped to dangerous levels, staff turned it around in 20 minutes. The second time, it took about an hour. Then, after having a medical procedure, it took 3 hours to stabilize Tyler’s blood pressure, and on another occasion it took almost 6 hours. Based on this, I concluded that my son was headed for certain death unless God intervenes, so I prayed even harder for God to heal my son.
I’ve watched lab values swing up and down to critical levels, each day trying to gauge whether there was more blood in his urine than yesterday. Each day I desperately am hoping that we could finally wean him off the current ventilator, only to be eventually disappointed as the weeks passed. After a while, the prayers changed from healing my son to praying that He minimizes his suffering. My quiet humble prayers then turned into prayers of frustration and desperation. I began begging the Lord to make a decision even if it meant ending Tyler’s life, thus ending his suffering.
Meanwhile, staff who had been engaging and enthusiastic about turning my son’s health situation around, had become more silent. I started to notice the frowns, broken eye contact, and the deep breaths from staff as they address my son’s condition. A physician told me that I am placing too much stress on myself and that the problem will resolve itself in a few days, while getting a soft pat on the back. Another staff person asked me if I have had any conversations with Tyler as to what he would want in this situation. Another physician asked me to think about making Tyler more comfortable. I reached the point of bargaining with God to take my life and spare my son’s life.
I kept thinking that all of this is torturous, and wondering where’s the will of Christ in all of this. Certainly it is not God’s will for my son to suffer from the effects of fighting Leukemia, or to deteriorate day in and day out until death takes over. I have always been annoyed with the premise that everything that happens on earth is ultimately God’s will, and now I was sliding down the same path. I had to remind myself in situations like these that these thoughts are a result of my own spiritual immaturity or weakness.
As a child, it was simply theological ignorance. All the negative implications of the world and the human condition simply exist, and even though my own spiritual walk hasn’t always lived up to my expectations, I have comfort in knowing that in all things God works for the good of those who love him, who have been called according to His purpose. The key word in the verse is knowing. I know it not because I read it, or the pastor said it during a sermon; I know it because I live it. Only God can bring good from disease or someone’s death. There is a great comfort in knowing, that if my son dies, it will not be vain. If my son dies, it is not because it is God’s will; only if God intervenes would it be God’s will.
From a logical or linear point of view, a person would then ask, why doesn’t God intervene in situations? If He has the power to intervene and doesn’t, it must be His will for the situation to happen. Do you see the problem with this level of thinking? If you go down this path, everything becomes God’s will; it is not biblically sound.
By now, my tearful prayers were for God to simply do something, anything; just please do it! That brings me to my next post on March 18th, about the day I witnessed a miracle before my very eyes.
Ron