Thursday, November 21, 2013

Fragility

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.

Amen


 


Tuesday, June 4, 2013

1,572 days I Have lived and Breathed Cancer, but...

I look at my son everyday as a brave and heroic little boy, who has journeyed for half his life to defeat cancer.  This journey was long, this journey was traumatic, this journey will never be forgotten, and will always remain as a shadow upon our family.    The question and/or comment from people "that we can put this behind us forever to be forgotten."  I must share that I wish this to be true, but this journey will forever be apart of who we are.  There are doors that remain open with potential risks from treatment.  The headaches..."is this cancer?" The bruises on any of my children... "is this cancer?"  Memory loss..."is this from cancer treatment?" Learning disabilities..."is this from cancer treatment?" Organ function/failure..."is this from cancer treatment or is it cancer?"  These questions  speak to just a few of the continued concerns.  The questions...the fear... the unpredictable future...to bear this shadow for the rest of a parent's life for their children, without ever wearing this for your children to see.  How does one carry such a burden, but to live fully.

Hillsong sings a song that speaks to how I live fully so I am not held in bondage to the questions, fear, and unpredictable future that cancer has caused in my family.  Jesus will one day return, and this pain will never be present again as though it never happened.  I surrender my fears, pain and heavy heart to the only one who can carry this burden without fail.  He is the one that has provided me with peace when I felt like life here on earth was hopeless and dreadful.  He brings me laughter and joy that envelopes me. I have seen God's hand move throughout my life as a child to an adult.  He has never left my side.  His beauty is expressed in this world in many forms.  He provides this inspiration for me, even when I turn on the news to hear of others pain and hear of the stories my clients share. 

[Verse 1:]
The skies lay low where You are
On the earth You rest Your feet
Yet the hands that cradle the stars
Are the hands that bled for me
[Chorus 1:]
In a moment of glorious surrender
You were broken for all the world to see
Lifted out of the ashes
I am found in the aftermath
[Verse 2:]
Freedom found in Your scars
In Your grace my life redeemed
For You chose to take the sinner's crown
As You placed Your crown on me
[Chorus 2:]
In that moment of glorious surrender
Was the moment You broke the chains in me
Lifted out of the ashes
I am found in the aftermath
And in that moment You opened up the heavens
To the broken the beggar and the thief
Lifted out of the wreckage
I find hope in the aftermath
[Bridge:]
And I know that You're with me
Yes I know that You're with me here
And I know Your love will light the way
[Chorus 3:]
Now all I have I count it all as loss
But to know You and to carry the cross
Knowing I'm found
In the light of the aftermath
I lift my hands to heaven to thank my Heavenly Father to be an enduring light upon my feet as my path was guided by Him.  I lost sight on Him when I only saw what was in front of me, but when I closed my eyes to this trauma and looked to Him...I FOUND HOPE.  My faith in Him, and not what I was presently walking was the only way I was equipped to be steadfast and strong.

I write this post 1, 572 days later, which is how many days it has been since my son was initially diagnosed with High Risk Leukemia with a MLL Rearrangement (markers with both AML and ALL).  This is equal to exactly 4 years, 3 months, and 22 days. It is also how many days to his re-birthday.  June 1, 2013, was the day we celebrated our son's re-birthday.  It is the day he received his bone marrow transplant.  It is the day we celebrate him for fighting a fight with love, positivity, and hope.

Thank you God for always being here to carry us through this journey.  I continue to seek your face and pray for continued health in my son.  I pray that one day he will share his testimony to encourage others and glorify you Heavenly Father. 

Happy 1st Re-birthday my wondrous and amazing son!  4 years, 3 months, and 22 days...fighting cancer... One year post-transplant...   I am a proud mommy!  I love you my son!  I love my Girls!  I love my husband!  My family endures...



Monday, February 11, 2013

My husband...on our Son's Cancer Journey

There has been many times I have wanted to express my thoughts about one person in my life who has seen me at my worse and my best during this journey.  This person is my balance, my equal, my life, and the person who picks me up when I have felt despair.  He is my soul mate.  He is my husband.

My husband is a man who is quiet and solemn.  He is a man of great thought and wisdom.    My husband is one that does not like attention, and there has been many moments that I have wanted to share much about my husband as I have posted my thoughts and emotions about this journey.  However, I have hesitated until now as I know he likes his privacy.  But, today, I want to honour my husband on this anniversary day of our son's diagnosis. 

Many people do not see my husband's true character.  He is the funniest person I know.  He makes me laugh at the most inopportune times.  He is a father that goes beyond the call of duty.  You will find my husband playing make believe, playing games, making crafts, telling stories, and just having child-like fun.  He is also a father that cares and tries to listen to his children's thoughts and emotions.  God has blessed me with my husband Michael.

We have certainly had our ups and downs as all husband's and wives do, but as we have journeyed together we have become closer.  There have been many moments when I have feared, cried, worried, and my husband came to encourage me.  He has held me and let me cry.  He allows me to be what I need to be in any given moment, but without letting me fall.  My heavenly Father guides me, gives me faith and peace that surpasses all understanding, but there have been days where this journey has been difficult.  My husband has been by my side during those days to encourage my heart.

We have balanced each other during this journey as though we have practiced this dance.  During days of difficulty for my husband it was my time of strength, and when I felt weak my husband was there for me.  We have perfected this dance over the last four years, but sometimes we stumble when there is unknown territory.  However, it will never change the fact that Michael is the person who I am forever glad to have my by side through all adversities.  I am glad he has been by my side during our son's journey with cancer.  He is and will forever be the most wonderful man, husband and father for our family.  Thank you Jesus for this gift of marriage.  You have brought us through much together and I pray we continue to trust and rely on you.  Thank you to my husband for being my partner during this journey that has effected us physically, mentally, emotionally and spiritually.  We can conquer everything together, as a family of five, and most importantly, with trusting God in all that we do.