Sunday, October 27, 2013

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.

Monday, October 21, 2013

Home away from Home

Now that we had a diagnosis,  Bob and I were ready to move ahead and get Caleb home.  Except that "getting Caleb home" would take another 1 1/2 months.  At the time,  we couldn't believe that it could take so long to get some training and have our son released,  but  we now know that most children with a diagnosis similar to Caleb's, will be in the hospital for at least 6 months with an extended stay at a rehab facility afterwards..  We had no idea that 2 months was a very quick time to get a ventilator dependent child ready and out of the hospital.

So began life in a hospital.  We moved into the private room, the one we had paid extra for when we thought Caleb was going to be born and home in two days.  We watched as family after family who we had attended Lamaze class with came in, delivered their baby, and returned home.  We also made our first trip outside of the hospital without Caleb.

Family that had come into town wanted to take Bob and me out to lunch.  I hadn't left the hospital since Caleb's birth, and everyone thought it would do me some good to get out for awhile.  Reluctantly, I agreed.  I didn't realize the sadness that climbing into the car,  with the car seat all set and ready,  and not having my son with me,  would bring.  As we entered the restaurant,  I couldn't believe that the world was still going on so normally for everyone else.  People were eating and laughing while my baby lay hooked up to a machine, fighting for his life.  I sat at the table,  surrounded by family who loved me,  but all I wanted to do was get back to the hospital and be near my little boy. I don't know if I ate anything or just made it through that first meal.   For the rest of our stay at the hospital,   times of leaving would get easier,  but they would never feel natural. I completely trusted the care that my child was receiving, but my mother's heart knew that right by Caleb's side was where I belonged. 

As the weeks continued,  word spread throughout our friends and acquaintances of Caleb's illness.  We began to receive calls and offers for help.  Friends came to visit, but it was difficult because only one visitor was allowed in the NICU at a time, and I did not want to leave Caleb's side to go to the lobby or cafeteria for a visit.  The most memorable help we received was a meal that a family brought down on Thanksgiving day.  It so touched me that my friend was willing to leave her out of town family and take time to bring us a home cooked Thanksgiving  meal.  This same friend also offered to do our laundry,  but I was too prideful to have someone washing my clothes.  Each weekend when I left my little boy to drive home and do laundry,  I wished that I had taken her up on the offer.  Another friend came down to the hospital on Christmas day and brought a gift for Caleb.  The holidays were such lonely times at the hospital,  and the selflessness of others who reached out to us during these seasons will always remain in my memory.

 Oftentimes people ask me how they can help others that are in the hospital. Although each families' needs are different, there are a few things that everyone could use:  gift cards to take out restaurants near the hospital,  money for parking or a parking pass,  little gifts of things they can do while in the hospital (magazines,  notepads,  games,  books,  a book of stamps and thank you cards,  snacks, ),  and homemade meals or cookies are always a treat.    If the family has a child that has been newly diagnosed,  don't plan on staying long, as they will want to return to their child.  But if they have been in the hospital for several months,  perhaps an afternoon away will be a welcome relief. 

Bob and I were very fortunate that Caleb was our firstborn.  For families that are juggling other children,  remaining at the hospital for extended stays is not possible.  In order to offer help to these families, I might recommend providing childcare for their other children so they can get up to the hospital.  These families will need all the more help with cleaning, laundry,  shopping,  cooking and normal homemaking tasks. 

Oftentimes,  as families enter into a crises like the birth of a sick child,  they will not have the knowledge of what all of their needs are.  Take the initiative,  and rather than saying ," Give me a call if you need anything," give them some choices of what you can provide and then follow through.    If you don't receive the proper thank you or appreciation,  do not take offense.  Their minds and hearts may be too consumed with grief to follow proper etiquette.   But know that the love and support that you share will help to strengthen and encourage the family.

Monday, October 14, 2013

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.

Monday, October 7, 2013

The Day That Changed Everything

Although we had trouble conceiving,  the rest of the pregnancy progressed uneventful. At 37 weeks, Caleb was ready to make his arrival.  We had the nursery ready, my bags were packed, and we were so excited that we were going to be parents.  All ultrasounds revealed a healthy baby boy,  and so we had no expectations of what was to come.  I can remember sitting in Caleb's nursery,  imagining life with my little one.  One night,  I put my hands on my belly and thanked God for the little miracle that was growing within me.  Just as Hannah had done in the Bible,  I prayed and dedicated this child back to |God.  I felt both his conception and the fact that we had made it so far into the pregnancy was a miracle.  I prayed that God would use Caleb's life to bring Himself glory and that our family would be used to touch others.  Little did I know how God would answer this prayer.

As the contractions got stronger,  we headed off to the hospital.  Once we arrived and were admitted, things began to happen quickly.  I had chosen not to have an epidural,  not because I feel there is anything wrong with having one,   in fact I had an epidural with all 3 other pregnancies,  but because both of my sisters had gone natural and if they could do it,  I needed to prove that I could also do it.  Let's just say that my pride and my need to prove myself,  cost me a great deal of pain.  And for anyone that knows my family,  not one person cared whether I went natural or used all the medication they had to offer. The only positive to this course of action was that I never had to question whether my use of an epidural affected Caleb.  Just this past year I read an article where they were trying to show the correlation between epidural use and an increase in the rate of autism.  I was glad to dismiss that questionable cause in his diagnosis of autism.   

After much pain Caleb emerged a healthy baby boy with apgar scores of 9 and 9.   I held him and looked into his beautiful face.  As he began to fall asleep,  I handed him back to Bob.  Within a moment,  the course of our life would be changed forever.  The nurses noticed that he wasn't looking so well and as they whisked him away, our room filled with specialists.  Soon after,  he was  taken to the neonatal intensive care unit(NICU).  One would think that at this moment I would be in a panic,  but I truly thought it was just a little glitch in the newborn plan.  So I got cleaned up,  ate lunch,  and continued to wait.  When the doctor came in to talk with us,  he said that they were suspecting a blood infection,  which a few days of antibiotics would clear up.  Although I wasn't thrilled with this change in plans,   a few days delay in bringing our little one home wouldn't be too bad. They wheeled me down to the NICU to see Caleb and before I was even allowed in the doors,  I had to scrub my hands and arms.  To this day I cannot walk into a hospital and not feel  a tightness in my stomach at the smell of the special soap they use. Once the hand washing routine was complete,  I was allowed to enter the NICU.  I wasn't prepared for what I would see.  My little baby, that was lying in my arms so peacefully just a few hours ago,  now lay on a bed hooked up to numerous wires with a  tube down his throat that was breathing for him.  It broke my heart.  We sat next to his little bed and didn't even feel comfortable stroking his hand without permission.  Thankfully there was a nurse on staff who saw our hesitancy and encouraged us to touch him.  But picking him up and holding him would have to wait for another time.  I sat next to his bed in disbelief.  How does one begin to process life when everything that you had planned begins to change.   For me , I turned to my faith.  I truly believed that God had a plan for this little boy,  and so I began to figure out what that plan was.  I suppose you could say that this helped to carry me through the next two months, but in the long run,  this became a stumbling block.  The Bible tells us ," Many are the plans in a person's heart,  but it is the Lord's purpose that prevails",  Proverbs 19:21.  It is a very good thing that our future is not revealed to us.  If it had been,  I never would have had the strength to make it through the day.