TO THE ESCAPE POD! : 5 Ways We Can Refuel When We Are Caregivers Of Children With Critical Illnesses

Museum of Science and History, Jacksonville March 2019

You know those episodes of Star Wars that some people love to watch over and over again where the bad guys are chasing the good guys and the good guys get a string of bad luck and are no longer safe on their own ship? I don’t remember a lot of the details found within the episodes, but I have always felt a sort of jeaolosy for the people in those big space ships who had the option of abandoning ship in a state of the art, escape pod. You remember, when the ship is under attack, or the bad guys somehow get onboard, or they have lost functions for controls or they are carrying precious cargo that MUST make it to its’ destination come what may? The relief that is felt when they run to the escape pod and are quickly disembarked from the main ship and use their cloaking mechanism to reach the safety of some distant planet? You know what I am talking about, right?

No one says: “What a coward, she’s leaving the ship!” Or, “What a terrible human being for leaving in a time of crisis.” NO, we applaud and cheer and are happy that they can get to safety. Now let me make this comparison. The ship is the state of caregiving. The good guys are the caregivers and the hero children they look after. The bad guys are the cancer, the heart problems, the sicknesses that threaten to cut these precious young lives short. Caregivers can take a cruiser to the “safety” of Planet Respite. That little ones we have been entrusted to care for need us to be at our optimum capacity.  How can we do that if we don’t take time to refuel, rebuild or restore ourselves? Let me share the top 5 things I have learned in the past few hellish months.

1. Soul Food Is Good Medicine

As a caregiver to a critically ill child, with little time on my hands, I have to find creative ways to feed my soul. If I fill my soul with positive affirmations and beautiful examples of strength in the face of hardship, I can be better equipped to share goodness with my child. For me, soul food is found in my scriptures and in the daily direction I get through prayer. It is found in the positive reflections shared with me by strong, faithful women who despite distance or their own family challenges, are choosing to walk this path with me. Soul food is found in beautiful art and in all things in Nature. One of the best ways to feed my soul is to sit and listen to my children play. To stop doing stuff and just enjoy the moment. To stop worrying and fretting and driving my family crazy with my ptsd and just be still. I feed my soul every time I look at the birds flying by. Every time I stare at grandmother moon and tell her my secrets, I can feel my soul stretching. I feed my soul when I listen to uplifting music. Music feeds and restores my soul. And when I stand in holy places and worship my all mighty Creator, my soul overflows with healing waters strength.

2.The Power Of Touch

I learned the power of touch from my own matriarchal ancestors. One example is when I was recovering from the traumatic birth of my first child. My mother visited me in the small apartment we lived in. She didn’t have very much time, but I remember that my legs were still swollen with Edema and she brought warm face clothes and gently, lovingly, massaged my legs while I nursed my new baby. It was such a tender moment and I am forever grateful that healing touch was part of my life as a child and that I could access it in adulthood as well. I make sure that everyday, each of our children get to “spend time” together or with me. This is what they call it. Spending time is cuddling together reading a book or cuddling together and watching home videos. For me, it is holding my child in my arms and hugging them until they squirm away. It is holding and massaging the little hand of a child in distress as he explains to me why things are not fair. It is crouching down and hugging a child who has fallen. It is kissing owies and putting bandages on cuts and medicine on bug bites. It is holding hands with my husband and sleeping on his shoulder. It is kissing my children good night. It is wiping the tears from a little girl who feels imprisoned in a state of sickness. Sometimes, it is just sitting beside her and letting her lean on me. She rests her head on my arm and I say to her: “Here I am, and here I’ll be.”

3.Laughter Liberates

There are so many studies showing the link between laughter and health. The saying, laughter is the best medicine, has become part of our family motto. Our son Jimmy has a joke for all of Aven's 'Thank You' videos to little friends who donate to her page. I love to listen to clean comedy. I love this one guy because he makes fun of how many kids he and his wife have. He is super Caucasian and as some of you may know I am married to a Caucasian man. He is also what some might call a Redneck. Because my hubby has often referred to himself that way, I find it entertaining and relatable to hear those funny anecdotes. I also like this middle eastern comedian because my favourite films are international films anyway and I love hearing about different cultures in funny stereotypes and generalizations. It really doesn’t matter what makes us laugh. I have found that on my darkest days (and I would like the universe to take note – there have been an unreasonable amount of those lately and I think I am good, thank you very much!), finding something to laugh about, even if I am just laughing at myself lets light enter into my heart. The light beats the darkness. I laugh even through tears, but I get some relief.

4.Micro-Breaks Will Do

As caregivers, the currency which we trade in is TIME. There is little time for self and even when there is time for self, we tend to resist that human need to rest. How do we carve out time for ourselves when are afraid we might miss something? When we want to be there anytime our child is in distress? When we want to enjoy EVERY moment because we are too painfully aware of how quickly those precious moments can be taken from us? Well, I have an amazing network of women lifting me. One of them shared the concept of micro-breaks with me. Depending on the situation, a microbreak can be a half hour away from the hospital bed your little one is on. You step away and walk to the outside of the hospital and get some outdoor air. Not fresh air because hospitals are usually in big cities with big pollution, but outdoor air. Different air. Air away from the stifling air that creeps into your lungs when you are watching your child fight for their life. I took my first micro break a week after Aven was admitted to the hospital. Between my sister, my mother-in-law and my husband, I was finally convinced to step away from Aven’s bed. I went outside and tried to eat a couple of bites of a salad Aaron found for me on the first floor of the Stollery Children’s Hospital. Later, after we were done radiation therapy and having started chemotherapy, we arrived at home from one of our hospital stays. It had been a long ride with cranky kids and I was stiff and limping. My micro-break was a half hour bike ride back and forth from our garage to the entrance to our gravel alley with a couple of stowaways that made a longer ride unaccessible. As I rode, I let the wind blow away my anxieties and my worries. When we can't take the time away for very long, micro-breaks will do.

5.Find Your Happy Place

When you discover a place on this planet that brings you peace. A place where you can walk into the forest and just breathe and be still. Or a place where you can stare at the ocean and try to grasp what the waves want you to know. If you have a place like I do where you can swing on the hammock that belonged to your grandfather and listen to your grandmother’s stories, go there as often as you can. When you discover your happy place, if you can go there in person, DO IT! If you can’t go there in person, find a way to meditate yourself there. Work on your breathing, tune out all sounds, shut down your mind’s worries, pause your heart’s fears and go there. Your happy place can provide sometimes a physical rest and more often an emotional respite that helps you replenish your storage of positive energy.

Conclusion:

Going through this experience with our daughter's illness and the impact that the energy that surrounds her makes for her quality of life has reminded me of the importance of rest and renewal. It is essential for her that I be at my best, but it is also important for the whole family and for myself. I have come to understand that I don't need to be jeoulous of the fictional characters and thier awesome escape pods because it isn't really a fair comparison. In our situation, we cannot and would not escape from our lives even if we could. We would gladly go down with a "burning ship" if it meant our child could be saved. How many times have I heard a parent of a child with cancer express the sincere desire to trade places with that child. We CAN find a way to take a break. If an overnight "escape" or a longer, week away trip is not possible, we can and should take regularly scheduled micro-breaks. We can find ways to feed our souls, replenish the spiritual reserves in our hearts, provide healing touch to our loved ones, and laugh, even if through our tears.

Ronald McDonald House Healing Garden, JAX

For Updates or to Contribute:
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