First part written in April…
It has been difficult to write a piece for my blog these past few months. There has been much to say about this journey, but have been frustrated with having to actually think, feel, and then share the continuous impact of this disease. It seems that every time I went to write something that my written words could not even provide enough emphasis of the pain, anger, and fear that goes alongside this journey. I came to a point in this journey where I began to realize that I was internalizing this journey with my son. This experience of internalization meant that I was becoming someone I did not like. I was becoming bitter, easily frustrated and lacked zeal. My peace began to slip away. In January to April, I discovered I needed to reach out for help. I was the one on the other side providing help, so I finally realized I needed to find a release so that I could continue on in a healthy way. This was my first opportunity to truly cleanse from all the pain that I held inside to protect all those around me. I shared my most inner fears of death and the fight that I had to keep holding onto so that my children and my husband did not have to experience most of this burden. I was able to cleanse myself by just talking. I did a lot of talking. It felt amazing and to know that I was sharing with someone that I did not have to worry about burdening them. I did not have to sensor what I was saying in order to protect their emotions. I needed this opportunity. I needed this cleansing. I have realized that I took this burden and carried deep within to be the strength for my children and my husband, but overtime it surfaced as do all our struggles. It took me a little time to realize I was at my most darkest hour and could no longer carry this pain alone. I am thankful to this person for sharing a part of my journey with me by just listening.
I strive to make this journey full of happiness amongst the sad memories so that life will be less chaotic and unpleasant for our children. In addition, I strive “literally” each day to be at peace with our life and to continue trusting God. This evening I was sitting in front of my computer and was triggered by a picture of lost friendships and the realization that life will forever be different. This life is invisible to outsiders of this disease. Unless, you are invited in to see such pain, fear and questions, outsiders could say that this fight is over and we have won. I wish that this were true as I sit here today. Everyday, I question when will this fight be over that I don’t have to look at my son and my daughters to question all that exists in their present and future lives. The questions that won’t go away and I have to be okay with all these unanswered questions until the return of Jesus. I struggle with hating this world, but trying to find love in a world where I turn the news on to hear such hatred surrounding God’s children whom he made in His image. I know that I want to love this world, as there is so much to be done before Jesus returns.
To be cont’d…
Today, June 28th, 2011…
I never posted the first part of my blog, as it was unfinished. Symbolic of my life’s journey…unfinished as there is so much to do and people to help. I am glad for that. I am honoured that God has called me to help those who are suffering.
I write today because I need to find my release. Today, Gabriel received his Lumbar Puncture. I really hate, despise these days out of all days of treatment. It is the day that I have to watch my son be forced to sleep, to watch his oxygen levels so that he is still breathing, to watch to make sure his heart is still beating and that he wakes up. I hate that I have to force him to wake after being “asleep” for too long. “Asleep” is really a pseudonym, as I don’t really see this as asleep when forced. I have had two scares during these procedures of oxygen levels plummeting, alarms going off and having a hard time waking him. I don’t want these days anymore.
Today, was even harder as I walked by one of the walls at the outpatient clinic to discover a little boy that we have known since the onset of this journey died. A little boy that my son played with and a little boy that my son prayed that would recover and not have to go back to the hospital. How do I tell my son that Sebastian lost his battle to cancer at only 7 years of age?
Update about our Journey
Gabriel continues on maintenance treatment receiving chemo every evening at 10:30 p.m. Sadly, maintenance is considered less than what he was completing during the intense phase of his protocol. Envision this…When you are going to sleep we have to wake our son ever so slightly to give him his chemo every single night.
In addition, he visits the hospital every two weeks to receive a medication through his Porte-a-cathe to prevent a serious form of pneumonia and once a month to receive another form of chemo called Vincristine through his Porte-a-cathe. Every month for a straight five days he receives another oral medication, which is a steroid that helps stop the production of cancer cells. Then, we have the horrible Lumbar Puncture days when he still receives chemo injected into his spinal cord.
We are finally getting close to completing the chemo regiment. This end is June of 2012. We are looking forward to this aspect.
However, please know that this does not end the fear that Mike and I will be experiencing at that date and onwards after completion. We will forever have to give our fear over to God. The end of treatment means concerns of relapse, concerns of what chemo has done to his body and mind, and what the future will look like. We will need continued prayer to take this fear from us that it does not debilitate us as parents. Gabriel will need continued prayer. Nonetheless, I do want this journey to be behind us, and I know one day it will be. I am confident and trust our Heavenly Father that this will happen.
Smith Family Updates
We have made some changes in our life that have brought much happiness. We have moved to Woodstock. We have found our home that we will forever stay, raise our children and hope one day will see our grandchildren come to visit. We have been creating such cherished memories for even such a short time that we have been here. We have made such wonderful friends/family at our home church that together they pray and share our journey with us. We thank them for this so much for their prayers and support.
I have been blessed with spending much more time with my cherished best friend. She has given me much by just being here, listening and making me smile and laugh.
Gabriel has been attending school and doing extremely well. He is also playing soccer, which he is also excelling in too. He is our brave, strong and determined boy that fights an amazing fight. You would never know that he was ever diagnosed with cancer. He is my hero and hope one day he will come to know this of himself.
We are looking forward to camp Trillium the end of August and our trip to Disney world the end of September through Make a Wish.
My girls are getting so big and are developing their own interests. Simone loves ballet and playing with her stuffies. She has become addicted to Build a Bear. Simone is so affectionate and loving toward everyone. We love her spontaneous hugs and how she goes around the table to tell her siblings and us how she loves us each individually. She enjoys telling stories and singing to us. She has a humourous side to herself that shockingly surprises us at the most unpredictable moments.
Yasmine is now 20 months and is quite silly. She is determined in her own way. She has been practicing putting on shoes and pants at such an early age. She prefers to do everything for herself and gets quite angry if she cannot try first. She loves to make us laugh and will try to find whatever she can do to make us howl. Currently, she likes to roll her shirt up so that she can make her tummy do a wave motion. She has also been known to randomly pull out some dance moves that puts everyone to shame.
We have come a long way since day one of this journey on February 10th, 2009. I am proud of our children and I am blessed that I have been given such amazing children. Even though this journey is long and difficult, I have learned so much. I have become stronger in-person and in my faith. I pray that one day this journey and my blog will help others in both big and small ways.
July 18, 2011
It seems strange as this journal/blog continues and I seem to struggle at selecting the post button. I have finally realized that logging my journey has in itself been a process of self-reflection and of honesty to those who read my blog. I am thankful for this opportunity to create a blog, but have been trying to determine why posting seems to be more difficult. Perhaps, I don’t want to continue visualize the fearful moments of this journey or that I don’t want to remind others about our journey. This question remains. I will continue to ponder why posting has been difficult. To end this blog and finally my post…I thank God that through this difficult journey I have come to see a greater love in our Heavenly Father that can only shine through when we allow Him to be apart of our journey in a closer and deeper walk. This relationship also contains those painful moments when questions are unanswered, but it is through Faith that we gain an acceptance of our circumstances as one day we will rise to see no more pain, trauma, heartache, sadness, anger and conflict. I look to that day earnestly knowing that there is much work here on earth to be done before Jesus returns. I know many of you wonder how to help our family. An individual at the Relay for Life in Woodstock made a great statement on how you can help...He said (not in his exact words) "We can do the medical stuff because we know this so well, but what we need from those around us is the emotional support. We need people to hug us and to just listen to us. This is all we need." I share this same sentiment.
I hope you are all blessed each day and look to the Heavens for strength and guidance. Thank you once again for taking your time to read my blog. Blessings to you all!