Losing God

As the weeks continued and we began to make plans to take Caleb home, the doctor arranged for several trials of taking Caleb off the ventilator.   These trials consisted of removing the ventilator while still having Caleb hooked up to all of the breathing monitors, and because they were all scheduled ahead of time we would all be in prayer, believing for a miracle.  We could all then celebrate and head home with a "normal" child. 

As my prayers remained strong, my disappointment in God grew.  Each time Caleb was removed from the ventilator only to be put back on, my heart broke a little more.  And each time I felt a little bit more betrayed by God.  I had no doubts that God could fix my boy, and the fact that he wasn't fixing him caused me to feel hurt and angry.  I began to turn away from God, because how could I go to him when he would allow something so cruel to continue that was surely within his power to fix. 

I had loved and tried to follow God my entire life.  As a child my family attended a Catholic church, and I remember spending hours talking with God while I would play with my stuffed animals or play on the swings in the backyard.  As I entered high school, my parents switched to a charismatic church, and I attended college at Oral Roberts University.  Oral Roberts was an evangelist who greatly believed in the power of healing.  I understood what the Bible had to say about healing and faith and God. 

Now though, my faith and my life were not connecting.  How could I continue to believe when everything I was believing in was not working.  I began to question if I wanted to continue in my faith.  I had known no other way, though, and so to turn from God at this point would have left me completely deserted..

As I look back at this time from where I am now, I realize that God was present all along.  I couldn't find him because I was looking in the wrong place.  I believed that the only way God could show up would be in healing my child.  Because I wouldn't turn around and look for God any other way, I missed him.  I now know that God had hand picked Caleb’s doctor.  Dr Rodriquez's first day at the hospital was the day that Caleb was born  If he hadn't been there, Caleb would have been sent to another facility and the entire course of his treatment would have changed.  God was present in all of the amazing nurses that we had.  They became God's hands of love to us, and although I could receive from them, I never made the connection back to God.  The family and friends that reached out also became extensions of God's grace and love.

Over the years I have often grappled with the idea of faith.  At one time I believed faith was to continue to pray for and fight for what I wanted no matter what the circumstances looked like.  I now wonder if faith isn't trusting in God's love and goodness even when the circumstances don't look good, believing that God truly has a plan that is much different than my own.  I believe that had I prayed as Jesus did, "My Father, if it is possible, may this cup be taken from me.  Yet not as I will but as you will," I would have truly been living in faith.  How I wish I had cried out to God and allowed him to bring comfort rather than to hold on to my "faith" and almost lose Him.

The Diagnosis

As the tests began to come back and the idea of an infection in his blood was proven negative,  I began to realize that this would not be just a couple of days extension.  Sending out tests and getting back results can take weeks.  As I was quickly to learn,  hospitals do not run on my schedule.  On the weekends no testing occurs.  Holidays are out,  and in the midst of waiting for answers,  a large snow storm hit Cleveland.  Who would have thought that would have delayed everything,  but it did.  Even though it was only a few days,  it seemed like an eternity when all we wanted to do was bring our little boy home.

 Family began to come in town to visit and we all began to pray for Caleb's healing.  Here is where my faith in God became tricky.  For the only reason that I could imagine that Caleb would be born sick, was so that God could heal him, and show everyone how mighty He is.  I was willing to be part of that plan,  because how much time could it take God to heal him?  I didn't figure very long.   And then we would have an amazing story to tell.  Unfortunately, this wasn't God's plan. 

At the two week mark,  the doctor informed us that they had found a diagnosis for Caleb.  The news was not good, for with this diagnosis, Caleb would be on a ventilator 24 hours a day for the rest of his life.  We were heartbroken , but even as my heart cried out in grief,  my mind reminded me that I serve a big God, and  the miracle would just be that much more amazing. This struggle within myself, to live through the grief, but also hold onto my faith, would continue for the next 2 years. 

 At the time that we received the diagnosis,  the doctor  gave us the option of having Caleb disconnected from the ventilator and letting him peacefully pass away in his sleep. I was both shocked, that we had been offered this choice, and sickened by the thought of choosing to end my child's life. The fact that God was going to heal Caleb,  made the decision a mute point. Bob and I looked at each other and instantly made the decision to move forward with life and to implement whatever interventions would be necessary. 

Although we did not make the decision to have Caleb disconnected from the ventilator,  I am aware of families that have chosen that path.  At one time I may have passed judgement,  but no more.  For in choosing the path we did,  we committed to making sure Caleb's needs are met for the rest of our earthly lives.  We did not know the magnitude of this at the time,  but perhaps some families do and realize their own limitation. Or perhaps they feel removing medical interventions will be best for their child.  With all of the ways that doctors can save lives,  this decision is more and more placed into the hands of  families.  No mother or father wants to have to make the decision that will end the life of their child,  but I respect and honor each and every decision and the doctors that offer these choices.   Just 40 years ago,  these choices would not have had to be made because many or our children wouldn't have survived.  I am not saying that wouldn';t have brought its own horrible grief and pain,  but at least the parents wouldn't have felt the weight of having made that decision.  As medical advances continue,  this struggle between saving life at all costs and choosing when to let a child pass,  will continue.  If you ever have opportunity to walk through these choices with a family,  please extend support and grace,  because regardless of the path they choose, they will forever feel the weight of the decision they have made.