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| My sister Emery humoring me, watching over me as I dipped my head in one of Whistler's lakes. Photo and stay in Whistler, B.C. courtesy of my other sister Yancy. |
Background
Those who have followed our daughter Aven’s story for some months know that in January 2019, when we discovered she had a tumor in her brain, we felt completely inadequate and unprepared. For my husband Aaron, who lost his dad to brain cancer several years ago, this news has been traumatic and has presented him with some personal challenges he thought he had already overcome. Because we have experienced different types of grief (which by the way are not always because of the death of a loved one), I know that for me, this time the grief stage of anger has lasted longer than I had hoped. Even if her type of cancer is a curable, we cannot help but feel we are walking around with a sword hanging over our heads. We know that even if the tumor was completely removed, there are some cells that would have been disrupted with the removal surgery. We know that those cells could have gone to other parts of her body. We know that the proton radiation she received even if it was to help prevent the return of the cancer, also has current and long-term side effects. We know that chemotherapy, again used to prevent the recurrence of the cancer, has current effects whose challenges spill onto the other aspects of her life and the lives of her family members. We know that she may have long term side effects that may negatively impact the quality of her life and her ability to reach her full potential.
Self-Care Lessons Learned
The term self-care is often raised in order to counsel or assist us in the grieving process, the logistical labyrinth of looking after a child with a critical illness, and all the other stressors exacerbated by a cancer diagnosis. The ability to achieve even a small amount of self-care is almost impossible if one does not have family nearby.
When Aven was diagnosed, Aaron had only been working at one of his jobs just shy of a month. We didn't and don't have medical coverage through his employment. In his part-time job he was not anywhere near having benefits either. We had only been home for four months from living abroad as volunteers with Cuso International. There were so many things already making life hard, so getting this news sent me into a whirlwind survival mode. It would be several months into her diagnosis that I would come up for air. My few days away from the chaos that is our home, was made possible because of my local community and my support network. Here are some things I discovered:
1. Having TIME away allowed me to deepen my connection to my Creator.
2. Not having me at home for all the behind the scenes things I do, made the family more aware of what it takes to run a home and gave them a greater appreciation for the multiple roles I play in the home.
3. Facing the fear of what might happen if I left even for a short time allowed me to let go of my compulsive control freak alter ego. I faced my challenges with faith instead of fear.
My Village
It would not have been possible for me to get away without the support of a wonderful friend and community member who looked after the children when Aaron was at work. I missed my oldest sons’ playschool graduation, yet he was still an important part of the day because the other moms in the playschool found ways to include him and obtain the pictures for the presentation that they needed, from me in advance. Some of these moms have treated us like family, walking this path with us and sharing their goodness with us. His teacher who has shown love to the family through many acts of kindness, has been such an example of noble service. The principal at the twins’ school and their teacher who visited Aven here in our home after she had her surgery, continued to support the family in countless ways. The students in the Onoway Elementary and in the Onoway Jr/ Sr High School demonstrated tender and thoughtful characters. The members of the community, many people whom I don’t even know came forward and just rallied around us. Perhaps it is because we are in a small community that people’s hearts have opened to us and blessed us with their generosity. Many acts of kindness have not been witnessed by me because I was away with Aven for her treatment in the US, but I pray that the day will come when I can pay forward all the good that I have received and that Aven has been blessed with.
It would not have been possible for me to get away without the support of a wonderful friend and community member who looked after the children when Aaron was at work. I missed my oldest sons’ playschool graduation, yet he was still an important part of the day because the other moms in the playschool found ways to include him and obtain the pictures for the presentation that they needed, from me in advance. Some of these moms have treated us like family, walking this path with us and sharing their goodness with us. His teacher who has shown love to the family through many acts of kindness, has been such an example of noble service. The principal at the twins’ school and their teacher who visited Aven here in our home after she had her surgery, continued to support the family in countless ways. The students in the Onoway Elementary and in the Onoway Jr/ Sr High School demonstrated tender and thoughtful characters. The members of the community, many people whom I don’t even know came forward and just rallied around us. Perhaps it is because we are in a small community that people’s hearts have opened to us and blessed us with their generosity. Many acts of kindness have not been witnessed by me because I was away with Aven for her treatment in the US, but I pray that the day will come when I can pay forward all the good that I have received and that Aven has been blessed with.
My 2 Ts, and a J is how I refer to the two friends who came forward to organize fundraisers for us and the local business owner who went above and beyond anything that we could have hoped for. These women made it possible for us to pay for so many upfront costs that would and may eventually be reimbursed, but which we never would have had the means to pay for.
My high school and college friends; and my friends through my church here and in other communities, who made it possible for the family to be with Aven during the long, hard last part of radiation therapy.
The friend who let me visit while waiting for my sisters to pick me up on our way to Whistler. The friends who took time out of their busy schedules to share time with me and lift my spirit. The kindness they showered me with was therapeutic. The friend who rode the sky-train with me and gave me a ride back to my sister's home. The friend who came to the airport to see me off and sent our little children sweet and much needed gifts.
My mother-in-law who treated me to a beautiful meal by the sea, when I traveled to the land where some of Aaron's people made their homes. For her kindness to her grand-kids and her thoughtful counsel.
My sisters and the sacrifices they made in their own homes to spend time giving me a chance decompress, to sleep, to walk in the forest and to dip my head in glacier fed waters. They cried with me and laughed with me and shared my burdens. What extraordinary women they are and how blessed I have been by their examples.
Then there is the global community that stays connected to us through social media, personal messages and inspired acts of kindness. We have been blessed by prayers lifted to Heaven on Aven's behalf. Prayers that have been given in holy places and that have included all the members of the family as well as Aven.
The friend of Aaron's cousin who left a prayer flag for Aven at the summit of Mount Everest.
The child in my cousin's church that prays for Aven and asks how she is doing.
The forever friends we met while in Florida who continue to care and pray and share.
Friends who do not allow geographical distance stop them from reaching out to us.
There are so many who have shared of their plenty or of their want, in our time of sorrow and struggle; without expecting anything in return. These souls are a gift to us and their names will be forever recorded in our family’s book of love.
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Aaron's dad Larry Martin, listening to our oldest daughter Gigi read. This picture was taken shortly after his surgery to remove a sizable tumor from his brain. They could not remove all of it.
Thank you for taking some time to read this post. To check our fundraising efforts, share our page and follow Aven's journey, check out the links below: https://www.gofundme.com/help-aven-beat-cancer https://www.facebook.com/groups/sunshinegirlaven/ If you would like a resource to help you deal with your grief, the program we have followed in the past is outlined in the following book: The Grief Recovery Handbook: A Program for Moving Beyond Death, Divorce, and Other Devastating Losses, By John W. James, Russell Friedman NOTE: In the field of social welfare, community care has to do with the transfer of care out of big institutions and into local welfare agencies, to allow people to stay in their homes and be looked after by family. For this post, I use the term community care to describe the essential role that community members in neighborhoods, schools, churches and social groups can play when a someone in the community needs support and assistance. |
