SELF-CARE MADE POSSIBLE BY COMMUNITY CARE: Why I Love My Community And Support Network

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.

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. 

Please forgive me if I haven't mentioned some names, or missed sharing about so many others who have helped us. I am compiling the names as I discover them. There are many who have donated to us anonymously.  We thank you also.

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.

The children were delighted when a friend sent the family a care package by surprise. They are still playing with all the goodies she sent. 

One of the 5 medications Aven is taking to combat the negative side effects of chemotherapy. It costs $97.40 and lasts 5 days. She has been taking it since her surgery in January. 

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.

T'WAS THE NIGHT BEFORE CHEMO...and all through the house, not a kidlet was sleeping, or even my spouse.

Welcome : If you are reading this blog for the first time, you should know that one of our twins was diagnosed with brain cancer in January of this year. While not intending to only write about my experiences while she is on her journey, the past few posts have been about her because this is what my life revolves around right now.

Background : 

When I was a teenager, my favourite day of the week was Sunday. We didn’t always get to eat dinner together as a family but on Sunday we did. After church, mom and I would cook dinner. If she didn’t need my help, I would sit on a little bench my dad made me and just talk to her the whole time she was cooking. All the kids would be home on Sundays and we would be talking to my parents and each other. After dinner was over, we would stay at the table spending time as a family. Mom would get tired of sitting on hard chairs so she would go to the living room to sit down. And all her kids (and my dad) would follow her to the living room and keep chatting away. Then mom would get tired of sitting in the living room and she would go to her room and lay on her bed. (As if to signify, she was done and needed her space). But all her kids, and sometimes my dad, would follow her to the bedroom and lay on her bed with her and keep talking her ear off. It was as if that space which she inhabited, wherever it was in our home was the most sought after place. For me, it felt as though we had this goodness being around her and felt safe and loved by her. Nobody wanted to go to bed and we lingered near her or in her room as long as she allowed us. She would finally get tired of all the chatter and send us to bed.

Mom and Dad's Bed :

Last night I remembered my mom. Our family had a bit of a crying festival as we discussed Aven’s treatment and what the next few days would look like for each person in our home. I am certain that there hasn't been a time before, when all the kids were crying at the same time. That is what happened last night and they each had their own reason for doing so. We let them cry together and we cuddled them and gave them an abundance of hugs and kisses. How did it start? It was the blessing. Aaron gave Aven a blessing of health and comfort and anointed her head with consecrated oil. As he blessed her, something beautiful happened. We felt this peace in our hearts and Aven and Lily both began to cry at the same time. The Spirit was so strong. The twins stayed near each other and held hands. They didn’t want to let go of each other. As we talked more about some of the children’s concerns, without noticing it, Aven and Lily mirrored each other's movements. It was so neat to witness. Then, the rest of the children each got a blessing of comfort from their dad. We shared what things gave us strength and Aaron shared his testimony with our family. There was such a peace in the room and it reminded me of the days when I would join my siblings on my parent's bed. They lingered. They wanted to stay in our room, on our bed. So we let them. We carved some time out of a crazy schedule and for some lovely moments forgot our worries. We slowly transitioned them to their own beds. We felt grateful that such a tender moment was felt by all, even if soon after, the boys were fighting for the millionth time that day... 

I asked Aaron to take the picture above because I wanted them to have a picture to go with this memory.

My Hopes :

I want to believe that these tender family moments help Aven. I hope that she remembers the love in our family when she has to face harder days than she has already faced. I hope that she remembers the power of the bond that we have. I hope that the prayers given and the blessings promised continue to strengthen her. I pray that Heavenly Father hears the prayers raised to heaven from all of His believers who pray for Aven and for our family. And I hope that all the children we have met (and those we haven't met) who are fighting their own battles, can also be blessed.

Last night was not the typical sending off I was expecting to have. But I am learning that all I can do is plan, prepare and have hope. We have felt God’s hand in our lives and I can be sure that the things we are experiencing will be used for our good. We will rise from this. We will learn what He wants us to learn. We will be stronger.

https://www.facebook.com/groups/sunshinegirlaven

https://www.gofundme.com/help-aven-beat-cancer

REFLECTIONS FROM AN ONCOLOGY MOM: What Not To Say To Me Or My Child, And What To Say Instead

As I reflect on the end of Aven’s proton radiation therapy treatment my mind turns toward what awaits her in the following year. She will undergo chemotherapy next. Until now, thinking of home has brought bittersweet feelings and I have not had the luxury of crying to make myself feel better. I MISSED my babies! I wasn’t here to hug and cuddle on her twin, whose heart is so fully made of gold that she is a certifiable treasure. I haven’t been here for when the little boys have scraped their knees or have had night terrors and looked for me in my room only to find my side of the bed empty. I have missed my firstborn’s concerts and milestones in school. I haven’t been here to listen her fears or to help her solve her problems.  

For almost 2 months my heart has been split in two. It has ached for Aven as she worked so hard to get through the radiation positioning and side effects. At this center she was the youngest child to have done proton therapy in the face down position without the use of anaesthesia. She maintained such a positive outlook and shone her light so bright. I also ached for the ones who stayed behind, for all that I missed, and for the emotional price the entire family has paid.

My goal was to suppress my feelings of anger or bitterness or guilt so that when my Aven looked into my eyes, she could see the best part of me shining back at her. In those moments when she looks to me for comfort and security, it feels like a special angel is dispatched to assist me. Perhaps it is the supervisor of the angels that surround us, for we have been lifted by the divine intervention that daily we seek. So it feels like a particular, vetted, expert angel arrives and boosts my spirit, magnifies my ordinary effort and strengthens me so that I in turn may strengthen her. It has been my hope that she sees strength and faith when she looks at me. If she does, I win a small battle within myself.

Because I can’t be with her all the time now like I was in Florida, I made a list of things I hope people will review/consider as they engage her and engage the family. Maybe we can have earthly angels around us in the form of friends and neighbours and faith community. Maybe we can all work together to build up, not burden her spirit.

Some of these things have been said to me in her presence and some I have been asked on my own.

WHAT NOT TO SAY and WHAT TO SAY INSTEAD:

1.       Is it terminal? Please be considerate of what we (or if reading this for someone else, other parents) may have shared with our (their) child. Don’t put us in a difficult position because of your insensitivity.

Instead say: I would like to know more. What is the correct term for her condition?

2.       What are her chances? I wonder if people think that parents of children with worse chances of survival are more deserving of sympathy than those of children with better chances. CANCER SUCKS. It doesn’t matter what kind it is.

           Instead say: I am here for you if you need to talk.

3.       How is she doing (with a sad face)? Please don’t think that putting on sad face when speaking to a child with cancer or a family or caregiver of a child with cancer is an acceptable expression of empathy. Be careful what perspective you share. Children are very aware of how others view them. In Aven's case, the energy that surrounds her impacts her own outlook tremendously.

           Instead say: How was your week? Regular face, the way you would speak to 

           anyone else regardless of their circumstances.

4.       You are so strong. I know this is meant as a way of complimenting either the child who is undergoing treatment or the caregiver. Consider that they may not feel strong and by saying that you may be adding another “to be” to their already mountainous pile of what to be right now.

Instead say: Is there anything I can help you with at home? Our son's playschool teacher  dropped off food and treats for the family while I was away. What a way to brighten and cheer those that had to stay behind for so long. Our friends and neighbors have given the children rides, our church family has shared food and offerred support and blessings. Our friends, the Morans, played an important role in supporting my mom and the family. One time they took the kids for dinner at McDonalds for a fun treat which helped distract them from missing Aven and I. These and many other kind acts and offers of help have been touching examples of what to say and what to do.

5.      I could never handle this. Really, so you would let your child handle it on their own if it happened to them? WE DON’T HAVE A CHOICE. When a child is diagnosed with cancer, there is no other choice other than to fight with them and advocate for them.

           Instead say: Have you been made aware of resources for your family, for this 

           difficult time?

6.      My nephew (substitute anyone you know) passed a few years ago of leukemia (substitute any life threatening illness). NEVER SAY THIS TO ANYONE GOING THROUGH THE BITTER PILL THAT IS CANCER! (An Uber driver started to tell me about her departed nephew in front of Aven and I quickly re-directed the conversation. (I was shocked that anyone would think this was acceptable).

           Instead say:I will pray for you and your family.

           Family and friends from diverse faiths have been praying for Aven. Her ward (church group) here at home had a fast for her one Sunday. We have heard of little children who don't evenknow her personally, pray for her. Family and friends traveling have put her name on temple prayer rolls and church prayer lists. Those things lift and sustain Aven and our family.

7.       What happened to her hair? I will answer with: Why is your foot in your mouth? Please don’t call attention to something my child may already be feeling self conscious about.

Instead say: You have a beautiful smile. Or, I love your brown eyes. There were some kind ladies at the Ronald McDonald House in Jacksonville, that always complimented Aven on her smile or on her lovely eyes. She always walked away feeling happy and bright after she spoke with them.

8.       You need to make sure she eats only healthy food so she can beat it. First, don't raise the notion that there is a chance she won't beat it. Sometimes people have also said, she looks great, she will fine. Don't minimize or be dismissive of her struggle. But regarding food: OBVIOUSLY, I am going to feed her with the best food I can afford. I am also going to let her be a kid and sometimes eat things that are just for fun or comfort. 

Instead say: What does she like to eat or drink? My friend Dena, who is a leader of the girls’ group at our church had the little girls (it’s kind of like girl guides but with church stuff in it too) make different smoothie recipes for Aven when she had just had surgery and was struggling to eat. That was first class and another loving example of what to say (and do).

9.       Going to Florida for treatment is like a mini-vacation. For some families this may be true. Especially if they can all travel and be there together in their own separate rental, have enough funds that they can do cool stuff with the entire family and do not have stressors at home waiting for them. Indeed some of the adult patients at the UF Health Proton Radiation Therapy Institute who were empty nesters there with their spouses to undergo some type of treatment, did really enjoy other aspects of being in Florida. We heard that on Wednesdays at the patients and their familys’ luncheons.

For us, it wasn’t so easy. Everyday was hard. Everyday she wished her siblings were there with her. Everyday she asked for her dad. Everyday I tried my best to cheer her up and introduce her to little friends that kept her mind occupied and her heart lifted. Although it was hard, we did have some happy moments and make some lovely memories. She made friends from different states, countries, and from different stages in life. It was heart warming to see the hand of God in our lives and to see the wonderful people placed in our path through HIM.

We were blessed to have had some neat experiences and visit some interesting places thanks to the generosity of strangers and donors to both the Ronald McDonald House (RMH) and the UF Health Proton Therapy Institute. I tried my best to coordinate fun things for Aven to look forward to after her treatments. She loved the Kids Zone at the RMH and the healing garden on the 4th floor. But being so far away from family took its toll. We count it as one of our biggest blessings to have had the opportunity to reunite the family when Aven needed their love the most.

So before telling us that what we experienced was like a mini-vacation, Instead acknowledge -                                                                                                                             

If speaking to Aven: That must have been hard to be away from your family and school and friends.  When she responds, follow with something like: I am glad you are back!                                                                                                                              

If speaking to me: That must have been hard to leave your 2-year-old and the rest of your children and Aaron behind. When I respond, give me space to confide in you or not.

All of us at one point or another have said things without thinking. It is not the end of the world and is not worth losing friends over. Most people are genuinely trying to be helpful. I have this NEED to protect Aven and writing these things down and sharing them in the hope that it may help her in her interactions with others, is a way for me to feel some comfort. I have been managing every aspect of her life 7 days a week, 24 hours a day for almost 2 months, a large part of it on my own. I have kept her near me wherever we have been, so that I can hear what people are saying or asking her. That way I ensure to cut off any less effective or insensitive comments. But she is ready for back to school, she is ready to re-integrate into her life. We went for a bike ride yesterday and we stopped 5 times because we met people who care for her or who have grown close to the family during this challenging time. This post is meant to be helpful to those around us and to anyone who is faced with this situation in their lives.

 

All the children get to keep the masks they have to wear during proton radiation therapy. On her last day, Aven was excited to show her family her mask.

Click on the links below to learn more about Aven's journey or donate to her GFM page.

https://www.facebook.com/groups/sunshinegirlaven

https://www.gofundme.com/help-aven-beat-cancer