Thursday, August 2, 2012

I cannot have Peace…when I Fear

Another day has come and gone as I sit at my keyboards to express authenticity of emotion and thought about this journey.  I so often begin my posts with emotion and pain, but this evening I want to begin with my blessings.

Our children have blessed us with expressions of love during times I have felt like crying.  The simplicity of either my son or daughters' hug as they wrap their little arms around my neck, always makes me speechless and appreciative of the gift of children.  The unexpected laughter from my children over menial tasks and routines, that causes a ripple effect of laughter to all that are within a short distance.  Our life is described as one of simplicity and isolation, but our children create a world of fantasy that wraps us with love and admiration.  To love life at its fullest is to observe and replicate that of a child’s simple worldview when life becomes so complicated.  Our children are the most important reminders in this world of why we love, respect, empathize and strive to do good, seek peace and love.  Most importantly, our children remind us of our Heavenly Father’s love.  If, we as parents, can love our children as we do…how much more does our Heavenly Father love us.  This thought gives me chills.  Our children bless us even in times of pain, anger, sadness, frustration, and fear.  Our children argue as any siblings do…our children test boundaries as all children do, but I know that my priority as a parent is to teach, correct and emulate Jesus Christ so that my children will grow to be healthy, caring and honourable adults that will one day glorify God. I want to glorify God by instructing my children as God instructs me.

There are many days when my humanness leads to destructive thoughts, which proceeds to an emotion that controls.  This emotion is fear.  Fear has remained a constant battle over this journey, and one that I have tried daily to not succumb to.

I must take a moment to share a destructive pattern that I fell into during this journey, and may be a common theme for others who have a child fighting a life threatening illness.  I fell into a trap, where I needed to be strong at all times for everyone.  When Gabriel was diagnosed in 2009, I decided that I would fight the best fight I knew how.  I would characterize myself from 2009 to 2011 as robotic when it came to medical care.   As 2011 approached, I began experiencing the compounding emotions suddenly as my body no longer was able to hold on any longer. I stopped sleeping.  I walked around anxious, and fearful.  I have shared my emotions in all my blog posts, but the emotions did not feel as raw until 2011.  I did cry and was angry, but something happened in 2011.  I began experiencing all those emotions (anger, fear, sadness, frustration) at once, and they felt more real then previously.  I decided it was time for counselling, as I could no longer cope.  My first session I shared my story as though it was a book I just read as I had so often in the past.  The next session, my counsellor began asking me the hard questions that I was never prepared for and never said out loud.  Not once did I ever voice this sentence to anyone…until that session.  My counsellor asked me what scared me the most that was causing me to fear?  I looked at her and could no longer hold back my tears.  For the first time in an audible voice I stated, “I am scared my son will die.”  I cried uncontrollable for a long time.  She let me cry.  I needed to cry like that as I held that pain in for so long, as I did not want the sense of losing control.  I learned something at a deeper level that reinforced the clinical education I had received prior to my journey with my son.  We need to be real.  We need to experience pain.  We need to talk about the pain when it happens.  We are not out of control when we do, but are strengthened even more when we allow ourselves to experience emotions at its truest form.  Today, I take all my emotion to my Father in Heaven so that He can hear my pain.  I cry…I get angry…I ask the whys…I seek Him through reading and studying the Word of God.  The bible guides my footsteps. 

I want to touch a little further on this post about why fear is so pronounced each day in this journey.  We live in a world of statistics, and science.   As parents, we read to determine the best course of medical treatment. We meet with teams of doctors to trust that the care they provide will protect and cure our child.  We hear and observe what cancer does to children.  It is in our face.  You have to ask yourself that when you see the destructive nature of cancer and of treatment…”how do you not fear?’  This journey encompasses sadness as the reality that surrounds us.  We observe the suffering of families who lose a child to either cancer and/or treatment.  We meet families whose child suffers further from organ damage as a result of the treatment that was to cure them from cancer.  A parent does not know the journey until it envelops you completely, and you have to be prepared for the unpredictable.  All at the same time being strong, peaceful, and caring for your other children.   No parent could ever be prepared for this journey.  We are not prepared to watch our child suffer.  Just as I was not prepared to claim vocally that what I feared the most was losing my son. 

I have learned many times over that fear causes me to lose sight in God’s amazing hands upon my life.  Fear robs me from everything that God has to offer.  I would honestly state that this has been the most difficult test and difficult lesson that I still struggle with today as I write this post.  Basically, cancer + transplant + unpredictability=fear.   I fear because of the unknown within the realm of cancer and a bone marrow transplant. When I stay attuned to God’s Word my fear dissipates and peace enters.  But, Satan quickly lures my thoughts during this journey and there are times I am not prepared.  I find myself on my knees once again asking God to quicken my life unto Him.

I know that victory cannot be won as long as I serve the problem of letting my thoughts control me.  Matthew 6:24-25 states: “Ye cannot serve God and mammon.  Therefore I say unto you, take no thought for your life.”  Immediately after that Jesus said, “No man can serve two masters,” He said, “Take no thought.”  I am learning that I falter when I serve my thoughts.  Isaiah 55 says for us to “forsake our thoughts, and by the Word, take God’s thoughts.  Furthermore, 2 Corinthians 10:5 says “ to cast down thoughts that challenge the Word and bring into captivity every thought to the obedience of Christ.”  My all-consuming thoughts that create fear do not serve God hands upon my son and my family.    Jesus is whom I want to serve.  Not my thoughts.  I need to continue walking in Faith in God’s Word for myself, and my family.  I pray that this will be my path. 

An Update

I want to keep updating my blog posts about my son, as I know there are some who do not have a Facebook account. 

Gabriel has been discharged repeated times to only be admitted once again.  Gabriel has been fighting low oxygen levels, respiratory infections, and CMV reactivation.  He is doing exceptionally well in spite of the battles that continue on this journey.  We are hearing him recite the phrase “I am bored” often.  I would rather hear this phrase as it means he would prefer to be doing something more exciting, and perhaps, has more energy to do just that.  Gabriel continues on multiple medications both orally and IV.  We hope as the middle of August approaches that his medications will be reduced as we anticipate returning home in September.  Our outstanding concern is that he has a reoccurring concern with low oxygen stats.   A Respirologist has been referred to Gabriel in hopes of assisting with these concerns.  At this point, our primary doctor believes that radiation has caused problems with his lungs.  However, there is no consensus as to what continues to lower Gabriel’s oxygen.  We hope to have this medical issue investigated further.  He is not in any increase safety risk, but his baseline has changed significantly when he is sleeping.  Gabriel has not had a fever for over two weeks, and we are very thankful.   We are thankful that Gabriel continues to move forward, and thank God for his continued protection upon our son as this season continues.

Please Pray for the Following:

1. Pray the Gabriel will be well enough to eliminate steroids
from his medication regiment. (steroids increases his
risk for in particular..CMV, but also
controls Graft versus Host Disease).

2. Pray that CMV reactivation no longer occurs.

3. Pray that Gabriel will not see any further complication
from his Graft versus Host Disease. He DOES NOT get Chronic GVHD, which can occur now or anytime after 100 days post-transplant.

4. Pray for healing over any respiratory conditions that the
medical team is struggling with diagnosing.

5. Pray that there will be no permanent damage from
radiation and chemotherapy.

6. Pray he will forever be healed from Cancer.