Thursday, November 21, 2013


I look at the face of my children observing innocence and curiosity in all they do.  However, my children's eyes also hide a journey of fragility.  They have stories of loss, trauma, suffering, and fear.   These experiences have brought questions beyond their years.  I have seen the impact of this journey now that the hospital visits have become less.  My children's vocabulary is medical language and fears of serious medical concerns aligned with normal childhood infections.  I have observed anxiety and fear by questions or thoughts shared.  As a result, my children have been attending counselling to help them heal from this medical trauma.  How do we escape the pain of this journey?  We carry this journey so close to the surface, that any trigger related to childhood infections, bruising, bodily pain expels a flood of emotions.  Our family has been seeking restoration from this journey through involvement in sports, working, small getaways, and school.   This involvement conceals a lot of trauma, but the reality of this journey it will always be apart of us.  I believe it is a choice on how we make childhood cancer apart of our lives as a family and as individuals.  We can choose to let this cancer journey rob our joy or we can aspire to do great things with what we learned about the deficits of paediatric cancer.  I am coming to realize that as much as I want to continue raising awareness there is pain that will go alongside as I see other families suffer.  The empathy created is unmeasurable.  I want to reach out to each family to give them hope and offer a set of ears to listen to their pain.  I want to advocate for change in a system that needs further research for better treatment outcomes for children.

Recently, I changed our community Facebook page to "Smith Family's New Journey: Childhood Cancer Awareness," but the change came with hesitation.  I want this journey to be over completely, and sometimes I want to run from everything to do with childhood cancer.  I don't want to be reminded everyday of the "what ifs," and the reminders that statistically my son will have medical issues as he grows, and perhaps, secondary cancers.  I want to help change the reality of childhood cancer for other families, as it is this feeling of fear, panic, and anxiety that I don't want children and parents to experience.

Since our son's transplant, we have transitioned to roles of normalcy.  We work, we play, our kids are in school, and we have been laughing a lot more.  Our son continues to attend the hospital every six weeks for proactive care.  The reminders of suffering resurfaces every time we step into the corridors of the hospital.  Recently, I was reminded of how painful this journey has been when our son spiked a fever alongside a backache and a headache. I feared the worst.  All symptoms would were very similar to a CNS relapse.  The fever continued Saturday, Sunday, Monday, Tuesday, Wednesday, which we then rushed to the hospital.  At this point, I was not sleeping.  I was scared, crying, and wishing this journey never had to be ours.  We have already been walking this journey for 4.5 years.  I did not want the reminders that as long as I live I will forever have to worry about my son, and potential concerns for my daughters.  Every trigger from the last four years resurfaced.  I fought hard and prayed that this emotional pain would leave.  How does one make this emotional pain leave without leaning upon the only one who can take it?  It is walking in constant faith through prayer, and reading scripture that this emotion is bearable.  Faith is not faith, unless you choose to trust God in the difficult times.  It is easy to say you are walking in faith when you are not tested.  It is during this greatest storm that faith is tested and built.  I don't have the answers to this reoccurring journey and the fear that surfaces in the unexplainable.  I do know without a doubt that God will be glorified in this journey.  This life on earth will be unpredictable and never the same, and therefore, I cannot put trust in fleeting moments.  I walk trusting that "Jesus is the same yesterday, today and forever (Hebrews 13:8)."

The one attribute caused by this journey is the intense and unfathomable emotion.  I have wanted to walk this journey being authentic about my emotion.  This pain is the reality of our human experience.  However, I have seen believers in Jesus walk a hidden emotional journey as it is the perception it does not represent someone walking a journey of faith.  I do not believe that walking an authentic emotional and thought provoking journey is identified as lack of faith.  As we look at the scriptures in the bible, we see Jesus clearly experiencing emotion.   In the book of Isaiah it speaks of Jesus as "a man of sorrows, and acquainted with grief."  It is recorded three times where Jesus was weeping in the New Testament.  First, in John 11:35, states that "Jesus wept."  It means to shed tears.  Jesus tears were connected to the death of Lazarus.  There are many thoughts as to why Jesus wept, and one view is that Christ wept out of sympathy for those whose hearts were broken.  Is it not comforting to know that Jesus shares our feelings?   Second, Jesus wept over his enemies when he contemplated what would happen to Jerusalem.  He audibly wept (Luke 19:41).  Third, Jesus wept for himself in the dark hours before the crucifixion (Hebrews 5:7).  Jesus in his tears stated "My God, my God, why hast thou forsaken me?"

My journey as a mom to a little boy fighting cancer has caused raw emotion from the fear observed and the fear of the unknown.  There has been many unanswered questions posed to my heavenly Father.  These questions will go unanswered, but it has never caused my walk to be swayed to an alternative path.  God's hands have been over my son, and my life since I first began walking with Him.   I don't understand why cancer, and then protection over my son's body during treatment when he did not contract swine flu from myself and he was neutropenic.  I don't have the answer to why Gabriel fought pneumonia when he did not have an immune system awaiting engraftment of his unrelated donor's marrow.  I have the same questions as many believers and unbelievers.  Nevertheless, I pray and seek God to direct my path to show me His will.  I continue to seek His face to gain strength and peace in the unknown future.

The life we all live is fragile.  We never know what tomorrow will have for each one of us.  I keep a blog to write my authentic emotion and this fragility.  Why would I want to remind myself of the fragility of life?  It reminds me in this fragile state that God is the only way to walk with freedom.  Freedom from fear.  Freedom in worrying about the future.  Freedom from suffering and pain of the past.   He bears all things for us when we allow Him.  He is my freedom from allowing this authentic emotion to fracture my faith.  Thank you Jesus for taking our pain to the cross.  You give us freedom so we can live to be a light for you as we help others that suffer.

Heavenly Father,  I pray...

Be with the families that are hurting and suffering from loss.
Be with the families that are fighting cancer alongside their children.
Give them strength to wake each morning with renewed peace.
I pray their hope is restored as they seek you heavenly father in the pain that they are suffering.
You are strength in a life that is filled with moments of loneliness and pain.
We don't understand why children must face cancer as it seem unfair, but I pray that those who get stuck in this question will continue to seek you.
I pray this question does not cause them to seek alternative paths that move away from you heavenly Father.
I pray that you continue to remind each person of your love and to continue knocking on their heart.  Your gracefulness and patience is shown through you ability to never leave our side when we do so much to forsake you.

Thank you for your grace, love, patience, and dying on the cross for our sins.