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

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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.

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