SANCTUARY, I need sanctuary!: Finding peace when there is change.

 

Peggy's Cove, Nova Scotia

INTRODUCTION:

It all started with the question: “Mom, what does sanctuary mean?”

I answered my little boy’s question using words and examples he would understand. When he seemed satisfied with the new information he had just learned, I went on to reflect on his question the rest of the way home.

HOW MY MIND WORKS:

What came to mind was movies I have watched where the protagonist seeks sanctuary in a cathedral and somehow the soldiers chasing her dare not enter. Then my kaleidoscope style of thinking jumped to varying images of buildings or spaces that offered protection. The image of Quasimodo in the Hunchback of Notre Dame, the Swan Sanctuary in Victoria, BC, the bird sanctuary somewhere in the middle part of Vancouver Island, monasteries the served as a refuge for different at- risk individuals throughout history. Finally, my mind landed on the different places where I have sought and found sanctuary.

A HOMEMADE WISH TRIP:

The first time I sought sanctuary during my trip across Canada with a truckload full of kids and pulling a trailer behind us was in a place called French River. We were traveling through Ontario. We had taken a wrong turn when trying to find our campsite, so we were driving later than usual. There were no safe places to stop and spend the night, and the kids were exhausted but plugged in (meaning I was letting them have their media devices). I was quickly looking for alternative spots to stop and I came across a motel that looked like it could work for us to park for the night. When we arrived though, they wouldn’t let us stay. As we were turned away, I felt a twinge of pain in my heart. Even though our situation was not even one percent the same as the sweet couple we think about every Christmas; still, I remembered that the young family was turned away over and over. I wondered what was running through Joseph’s head back then? I wondered what Mary felt as she braced herself for another rejection. As the Christmas season arrived, I continued to ponder on what sanctuary means to me and what is it that I consider a sanctuary.

When placed in the situation of experiencing houselessness and having our temporary accommodation when camping turn into our permanent accommodation, I felt so inadequate. What in the planning stages sounded cool and fun and adventurous, during implementation took so much extra energy. An expert spinner as I had to spin difficult things to Aven and the kids during the past couple of years she was in treatment, there I was again spinning. Trying to shield the children from the difficulties we inevitably had to face. Trying to “make room” in the scarcity of our space. That day in Ontario,

•    after a long, stressful drive, and
•    having gotten lost, and
•    being co-pilot in the dark, and
•    having a different comfort level with speed than our driver,

I took the rejection very personally.  I felt such a heaviness and I felt like such a failure.

And as we tried to figure out our next steps, Aaron remembered that we had driven by a church. I hadn’t seen it because I was stressing out about driving in the dark. I told him we should go and see if the parking lot of the church looked ok for us to park for the night. When we got there we noticed a parish house attached to the church on the same property. Seeing the light on at the house, Aaron and I were prompted to go and ask if we might be given permission to stay in the parking lot. The pastor came to the door tentatively as anyone might be whose door is knocked on late at night. He seemed nervous, likely concerned about who was standing on the other side of the door. This pastor embodied the love of Christ and seeing strangers at his door asking in a sense for sanctuary, he did what all true followers of the great Redeemer should do or aspire to do. He did not turn us away. He let us stay. We camped out at Paroisse Notre-Dame-De-Lourdes in French River, Ontario. How blessed we felt! What a needed respite from worry and stress! What a blessed opportunity to sleep in a safe place! What an opportunity to rest the night and drive with confidence in daylight, rather than at night in a land we had never set foot on. Is it a coincidence that he was still awake at 11 pm? No…, I am certain it wasn’t. The children old enough to know what had happened when we took the wrong turn had decided to pray just as Aaron and I had.  Our prayers were answered that night. This meeting in this place is etched in my memory forever. It seemed like every place we ended up, whether by design or by accident, God found one of his servants to bless us. There was someone to brighten our day or lighten our load.

Paroisse Notre-Dame-De-Lourdes, French River, ON

Here are a few more examples:

There was the college student we met in Vegreville, Alberta that took our photo by the giant Pysanka, even though these days people are afraid to make contact with each other or hold a stranger’s phone for instance. It meant so much to me that she took our photo.

There was the stranger from Lanigan, Saskatchewan who heard my husband asking the cashier at one of the gas stations in town if there was a water fill station we could go to. The campsite we stayed at had shut their water for the season so we only had what was left from the previous campsite and our regular drinking water totes. Without hesitation, and not knowing us, she offered to let us fill our tank at her home. Her husband who is the owner of a hardware store came to the house from the store. He noticed in his home’s security camera that a huge trailer had pulled into the driveway. No worries she said, drive safe. Her name is Marni. I left a blessing for her and her home and family in my secret prayer to the Lord.

Marni and her husband own this place, Lanigan, SK.

The gas station owner in Montmagny, Quebec that called the tow truck company when we got our trailer stuck on a pole and it had to be pulled sideways.

The retired Spanish couple in Ottawa that stopped to talk to us about our trip and gave us some tips on places to see.

Parliament Hill, Ottawa, ON

Niagara Falls, ON

My aunt and uncle who welcomed us into their home and made us all feel so loved with their kindness. As we left, my aunt loaded up our truck with supplies we might need and any food we could carry in grocery bags. She sent presents for the children to open at Christmas and a card with a gift for the three adults in the family. I left a blessing for my aunt and for my uncle and their family.

Tio Sarbe and Tia Carla, with my treasures

My future cousin-in-law who found a place for us to park the trailer that wasn’t too far from my uncle and aunt’s home.

My cousin and his beautiful wife who I hadn’t seen since their wedding day. Neither they nor I had met each other’s children. We were invited to dinner at their home, and it was such a warm and welcoming place. Their children all teenagers and young adults were such amazing humans! We were thrilled to know them. Their kindness and generosity were heart-warming and uplifting. We left a prayer and blessing for this beautiful family as well.

Hugo and Maria, and their beautiful family. I was a bridesmaid at their wedding.

The Maple Leaf Campground owner in St-Leonard-Parent, New Brunswick, who let us stay even though the campground was closed for the season! We left good wishes and we promised to return one day.

Maple Leaf Motel and Campground, St-Leonard-Parent, NB

BLAST FROM THE PAST: HURRICANE ALICIA

But getting back to my time seeking sanctuary. Probably because our stay at our church during a time of crisis is a key memory of my childhood, it was an easy move to seek the church in my adulthood.

There was the time when a hurricane tore the roof off our apartment when we were living in Houston Tx. I was terrified huddling on the hallway part or our apartment with my siblings as my parents rushed about getting a few things packed for us to take with us. A member of our faith came by to drive in front of us on the flooded roads because my father’s sedan likely would not make it without having someone ahead guiding us and helping part the waters. We reached the chapel where we attended church on Sundays. This church leader let us in and made sure we were settled in for the night. I remember there were a few families there, all seeking shelter, sanctuary during the terrible storm. The safety of the church brought a peaceful feeling amidst the raging winds and showers outside. Our parents showed us that the church was our refuge during a storm and could be a refuge and sanctuary from other kinds of storms as well.

The Church of Jesus Christ of Latter Day Saints building, New Glasgow, NS

We hope that our children learn the same lesson. We hope that they know where to turn when they experience struggles, and we hope that they find strangers and friends who care.

BACK TO THE PRESENT:

On our trip across Canada, the next place we needed sanctuary was when we got to the outskirts of New Glasgow, Nova Scotia. That was supposed to be our stop for a few months and our attempt to live off grid. Aaron had sourced the location and had been in regular communication with the lady who was supposed to host us. As we crossed the Nova Scotia border, I started to feel like something might not be right. I told Aaron how I felt but he brushed it off thinking that I often overanalyze things. We started traveling to the location that was supposed to be our temporary home and came to a blocked off road and construction signs. Our host hadn’t told us about this obstacle. It would have been nice to know so we could re-plot our route. We ended up having to go on this long, windy and narrow detour. We took another wrong turn with this huge trailer and got to a dead end street!!! I had to get out of the truck and help Aaron back into a stranger’s driveway so we can turn the trailer. They make driveways thin here and there are ditches or culverts on either side. And there we were, trying to get our trailer out! IT was nuts! But we finally managed it (I am sure because of a merciful God in Heaven). Even though by this time my senses were on high alert, we continued our route. I again mentioned my mounting concern about the place we were supposed to end up in. I asked Aaron to check if our host had responded to any of our messages for that day. She hadn’t. Yet, we pressed on. We had come so far. When we arrived at the destination, we put our 4-way flashers on stayed on the side of the road. She had previously told Aaron in that she thought we could back into their driveway. Knowing exactly how I was then feeling Aaron walked into the property to check it out on foot first.  That is when his heart sank and he came to the same conclusion that I had come to 3 hours earlier. This was not going to work. They hadn’t cleared the land like they said they would. There was no level area to put the trailer on and what land there was had holes and uneven ground everywhere! Our trailer would bottom out if we tried to back in or pull in there! We were very disappointed and very tired.

It was getting late and the sun was starting to set. Knowing that the nearest town with a church building from our faith was in New Glasgow, we drove in that direction. We prayerfully arrived at the church building and parked the truck and trailer at the back of the parking lot. Our kids were getting hungry so I started to make dinner while Aaron went inside to find the church leader in the area. The only people in the building were doing family history, but they called the New Glasgow branch president for Aaron. Within minutes, President Macdonald arrived at the church. He was calm and collected…cool as cucumber. You would think that he got a request from a member family traveling across Canada with a truck full of kids and a 29-foot trailer all the time! This loving disciple of Christ let Aaron plug our trailer in at the church and told him we could stay the night at the church parking lot so we could regroup and start to implement plan B. It was too late to keep driving so we set up for the night and got all devices charged up with the church’s power. As Aaron moved our trailer to a better location in the parking lot, the branch president invited the children to a church activity that coming Friday night! He stayed with us until Aaron was done moving the trailer and offered to ask around in his group of members to see if anyone had a spot to rent to us. This church building, this sanctuary was home for a few days while we finalized our new temporary place.

DAVID:

In the end, we found an amazing host in a place called Upper Branch just outside of Bridgewater, Nova Scotia. Among the many things he is, this man is a business leader, community activist, entrepreneur, philanthropist and haskap berry farmer. His heart is made of gold. His business partner put us in contact with David. Because of him we have a soft landing in our experience with off grid living. He has gone above and beyond what we hoped, and we have been given time to try a few different scenarios as we wait for Spring and the next leg of our journey. This sanctuary is a peaceful retreat.

FOR THOSE WE LOVE AND WHO LOVE US:

We know that how we are living is worrisome to our family and to some of our friends. We know it isn’t mainstream as our daughter’s neuropsychologist diplomatically put it. And it seems an odd choice for people with the cloud of cancer hanging over their heads. We know that it is tough, and I can’t sugar-coat and say it is otherwise. We know that if we had come on the trip earlier in the year it would have been easier. But MRIs can’t be pushed back in most situations, let alone Aven’s, so we stayed in Alberta long enough for her latest scan and then came to explore the rest of Canada! We are trying to seize the moment. Why wait?

We are blessed to be close enough to the IWK Health Center in Halifax whose oncology team is going to work with the team at the Stollery Children’s Hospital in Edmonton. After all, it is the same country. There are similarities in health care between provinces. It isn’t a perfect health system here or anywhere but there are checks in place so that someone like Aven doesn’t fall through the cracks. And Aven has an army of family and friends wishing her well and praying for her healing.

She is having a blast. She LOVED visiting family in Markham, Ontario. She asked if I would let her stay with my aunt Carla and uncle Sarbelio through a summer vacation! The children are getting to see different ways of living. They are learning that they can be just as happy with a cupboard of selected toys as they were with a room full of toys. They are learning survival skills from a dad who loves them and daily works hard to give them what they need. They are developing friendships and adapting to other customs and slang. Although they are going without some first world comforts, they are little fighters who don’t give up. The three middle ones have started a club called Mom’s SOS (a mother’s helper service) and they hand out coupons to any young mother with a baby or small child with the hope that they will be called upon to “help” another mother.

They were “road-schooling” but requested to attend a school here to experience something they haven’t had a chance to experience in almost 2 years. Boy, did they luck out! They are attending a small rural school with amazing teachers, teachers’ assistants, cafeteria staff, administrators and health personnel. The school has fantastic playgrounds (a must for Martin kids), a teepee in the field and a forest to explore in! When the principal was talking about the school, she just had to mention forest playground and I was in. I finally trusted the universe with my children once more. I let them go into a school and spend time with amazing people like the ones from our beloved Onoway Elementary School. It wasn’t easy and I felt a little triggered from some things in the past with Aven, but I managed.

Ready for their first day of school, NS

A FRIEND FROM MY PAST:

At church I reconnected with a talented woman who was my friend when I was in the young single adult ward (singles worship group) in Burnaby, B.C.! I didn’t know she lived here!!! In the church group we ended up in. Coincidence? No. I don’t think so.

She introduced us to her beautiful family and invited us to an outdoor dinner at her home. She put me in contact with a family that can potentially mentor us as we learn about off gridding. There are families who have included us in activities for the children, invited us to their homes even though we are such a large crowd. We have been welcomed by a kind and loving group of members. Recently a retired couple came to our aid when Gigi and I were in a single car accident. Because of the weather, there were no cabs available to bring us to where we are staying. The tow truck driver dropped us off at a Timmy’s and this couple left their home on a terrible driving day and came to pick us up and drop us back at our trailer! So very kind. As always, the people in our faith have made the difference between feeling the sting of isolation and understanding that while we may feel alone, we are not alone.

Trunk or Treat organized by members of the Bridgewater Ward, Wileville, NS

ONE FUTURE FAMILY GOAL:

Our kids would love to keep traveling outside of Canada, but that is not a possibility at this time. Maybe when Aven is at the 2-year scan phase. Maybe when the world is rid of the pandemic or the governments are able to manage it mor effectively. Maybe then.

This trip is allowing the family to reset. To feel liberated. Like traveling to Latin America as a family, traveling across Canada as a family was on our bucket list. And more than most, we have present in our minds how short life can be. How very precious is our time on this earth and how important our experiences with our children are. It hasn’t been easy. We seem to always have unexpected things happen in multiples. But just as our challenges are many so are our blessings. I can see the different outcomes and consider our possibilities. There are things that continue to weigh on my mind and to weary my heart. But everyday I get to look out at the field where the berries are wintering and the forest where the wind lets the trees be still or offers them a melody to dance to. I connect with my thoughtful friends from back home and am blessed by new friendships out here. I lean on my mom and sisters. I talk to my God. I cherish my kids. I persevere with my eternal companion. We continue to choose each other.

MY SANCTUARY:

I understand how sanctuary can be a place, like a temple or church or place of worship. It can be a country that offers asylum or a safe location that offers a welcome. And for me, it can also be a people. My sanctuary is wherever my family is.

This year instead of decorating a tree, we got to decorate a fence!

References: 

South Shore Farms

Maple Leaf Motel Campground & Restaurant

The Church of Jesus Christ of Latter Day Saints

Larson's Home Centre, Lanigan SK

Pariosse Notre-Dame-de-Lourdes, French River

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.

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