Since publishing Part 1 of How We’ve Coped and Found Peace we’ve had many opportunities to test our own advice. In late April, Jenna’s belly became very distended, a condition called ascites (fluid around her abdominal organs caused by liver damage), and had to have a procedure to drain the fluid (a paracentesis). That was 2 unexpected days in the hospital plus 3 new prescriptions added to the wide array Jenna already takes, to keep the fluid under control. Shortly after, Jenna’s liver doctor told us it would only be “a matter of time” before Jenna will need a liver transplant.
From the beginning the doctors have said a transplant was a possibility but they were hoping her liver would regenerate once her chemo treatment was finished. Unfortunately, we’re maybe halfway through her chemo. To hear them now say “It’s only a matter of time” has been an entirely different thing to process and accept. It’s taken over a month for me to get over the shock and feel like myself again. Even now my head spins if I think about it too much.
As I mentioned in Part 1, we are not experts at coping and are often derailed, as we have been the last 2 months. And there are so many others who’ve had much more traumatic and heart-breaking experiences and I can’t say they’d agree with us. My intention in writing this is to help another family going through a similar experience. With that in mind, here are more ways we’ve coped while our almost 1-1/2 year old daughter has gone through chemo, and still found peace, sometimes…
7. Find Answers to All Your Questions
When we received Jenna’s diagnosis last September, our lives were turned upside down. We’ve had tons of questions… about her diagnosis and treatment, about our past decisions, and about “Why is this happening to us?”
Getting answers about her diagnosis and treatment isn’t always easy because we don’t always know what to ask or understand the answers. But it’s important to try to understand at whatever level we can and keep asking questions until we do. The answers, while not always clear or concise, are logical, factual and unemotional. When I don’t understand what is happening to Jenna, or feel confused about her treatment, my mind takes me away from her, and I don’t like that and I don’t think she does either.
Then there are questions like “Could we have figured it out sooner?” “Would anything be different if we did?” “Did I do everything I could to figure out what was wrong?” These questions about the past often lead to guilt and regret if not handled carefully. And the distraction of these questions unanswered in our minds can be lethal so finding answers is very important. Often the answers are ambiguous. Sometimes concise. Either way, when dealing with the past, I have to be willing to forgive myself, and accept that I did the best I could at the time. There’s nothing I can do to change the past and what is important is being here now for Jenna. As Thomas Moore so eloquently wrote in his book Dark Nights of the Soul “…if you’re busy struggling with the past, you won’t be available to the present.”
Asking “Why is this happening to us?”, while a common question to those who are suffering, can be answered two ways. One answer can lead to self-pity and role of victim, the other to empowerment and growth. We try to stay with the latter where we can create positive, empowering answers. For example, we could say this is happening because it’s helping us become more compassionate, or showing us what we’re capable of, or teaching us to go with the flow, or to strengthen our family more. Or we can simply say, “It just is.” We can find something positive in our circumstances, or just accept the situation as it is. It’s out of our control anyway. (See #3 Release Your Illusion of Control in Part 1)
No matter the question, if it’s not answered or the answer is disturbing me, my attention is not on Jenna or my family, and that doesn’t work. Getting all my questions answered clears my mind and helps me deal with what is happening now and what will happen in the future.
8. Learn Something New
After years of treating almost all our illnesses holistically, we are now immersed in the world of conventional medicine, and oncology and organ transplant of all things! The first couple of months of Jenna’s treatment were overwhelming, to say the least, and I didn’t understand much of anything. But asking lots and lots of questions helped (as I said in #7). I also noticed getting answers made me feel more confident and calm.
Now when I’m at the hospital I make a point to learn something new, whether a medical term or committing another staff members’ name to memory. Having some understanding of the medical world, whether related to Jenna’s treatment or not, boosts my self-esteem, which is nice. I better understand what is happening to Jenna and feel less stress caring for her at home. And when we go to the hospital, I feel more comfortable knowing many of the people who care for Jenna. And, bonus, I actually have control over learning new things!! (See #3 Releasing Your Illusion of Control in Part 1)
9. Find Something to Look Forward To
This journey with Jenna is an odd mixture of monotony and unpredictability. The somewhat predictable pattern of blood draws, clinic appointments, treatments, daily medications and tube feedings often feels monotonous. Yet the possibility of infection, fevers, ER visits, delayed treatments, and unexpected procedures is unpredictable and out of our control. Add to that the many, many months of life revolving around Jenna’s treatment and care, and the underlying fear of treatments not working, etc., and I feel burned out and weary. Exhaustion to the core, at every level.
Jenna’s condition has affected our whole family. Conversations between my husband and I often revolve around Jenna, her blood counts, her next appointment, her meds, etc. What we can and cannot do as a family has revolved around Jenna’s condition for many months. Sometimes that is all there is. Jenna’s treatment. One mother in a similar situation aptly called it “living in the cancer world.”
Breaking out of our “world” has become more important than ever. We must get out and live life, refuel and renew ourselves, so we can take care of our sick child. Also so we can carry on in our “world” without going insane.
There are daily things I looked forward to, those things that I could do to take care of myself without leaving the hospital or home. Jenna was often so sick I did not want to leave her for even a minute. Those were the days when taking a quick shower or brushing my teeth were things I looked forward to.
Other days, especially hard days, knowing the day would eventually be over and I could escape into the oblivion of sleep, even for an hour, was enough to keep me going.
Having other people take care of me is very renewing too… My sister bringing treats to the hospital, my husband bringing my favorite dinner, or a text or call from a friend just to say “I’m thinking about you.” The mornings my mom watches Jenna each week are my lifeline. I can catch up on laundry or spend time doing whatever I want!
Dates with my husband are more challenging, because I still don’t like to leave Jenna for long, but no less important. During the most intense part of Jenna’s treatment, we rarely went out at all. While she was in the hospital, eating lunch in the cafeteria was a big date for us. In between hospital stays, my mom would tell us she would be coming to watch the kids, she’d give us money and tell us to go somewhere. (She has been amazing through all of this!) Doing something easy like seeing a movie or going to a favorite restaurant was a good date. We enjoyed each other’s company and had something different to talk about without having to exert a lot of energy.
Family outings have been challenging too. With Jenna often neutropenic it was too risky to get out. And the energy it took to pack her feeds and medications was too much. It was easier to just not go out, to instead rent a movie and sit at home.
We have found a wonderful source of support though, which we are very grateful for – HopeKids. HopeKids is a non-profit organization that plans events and activities and offers a support system to families who have a child with cancer or other life-threatening disease. This wonderful group plans over 20 free activities each month. All we have to do is show up and have a good time. Last month we took our son to a scuba diving activity. Earlier this month we attended a private after-hours event at the zoo. These are the kinds of wonderful things offered by HopeKids. Our son especially looks forward to these events and we are often able to do things we couldn’t afford otherwise.
Whether you find things to look forward to in the day-to-day monotony of treatment, friends or family take care of you, date your spouse, or find an organization like HopeKids, it’s really important to have things to look forward to while your child goes through chemo to help you renew your spirit and energy.
10. Be Gracious
We’ve experienced so many emotions going through treatment with Jenna, often at the same time, usually very intensely, and combined with an overwhelming feeling of helplessness. Add periodic doses of shock and terror and you get a glimpse of what our lives have been like for 9 months. When you’re going through this kind of intense, overwhelming experience with your child, where you have little to no control, it’s easy to feel overwhelmed and take your feelings out on others.
And it’s certainly easier to lash out. However, it does not feel good and doesn’t change anything about the situation. Being gracious, while sometimes more difficult, feels better. When I say be gracious I mean be kind, courteous, and pleasant. To yourself and to your child’s medical team. Because you are doing the best you can and so are they and you are partners in caring for your child.
Sometimes you can be gracious. Sometimes you just can’t. I’m not suggesting you pretend to be pleasant when you feel completely opposite. If I couldn’t be gracious, I would follow my mom’s advice: “If you can’t say anything nice, don’t say anything at all.” Those were the days I said nothing to the doctors and nurses unless they asked me a question. I didn’t feel good about being so aloof, but at least I didn’t lash out at them, and sometimes that was all I could muster.
Finding an appropriate outlet for your intense emotions is important. For me, writing all my thoughts down in a journal helps me process and decompress. I’ve filled almost 3 notebooks in 9 months. Other parents prefer to scream into a pillow, exercise vigorously or pray. Talking to someone who can listen objectively is helpful too. Our hospital’s oncology unit has a team of social workers who are great listeners and a wealth of knowledge, compassion and resources.
I never ever want Jenna’s medical team to think I’m not grateful for what they’ve done and continue to do for Jenna and our family. I don’t want them to feel dread or tension dealing with me. I want genuinely kind, caring, loving energy to surround Jenna. That is why I strive to be gracious to all those amazing people who care for her (including me and my family). ; )
11. Find a Personal Belief System
This might be a touchy subject but I feel it’s important to mention because it has played a big part in my being able to cope with what is happening to Jenna.
One of the many questions commonly asked during trauma and struggle is “Why?” It’s a deeper question than “Why is this happening to me?” like I mentioned in #7. The question I’m talking of here involves God (or a higher power)… “Why did God let my child get LCH (or cancer)?” or “Why am I (or my child) being punished?” or “Why did God let my child die?” or, in general, “Why does God let children suffer?” In my experience, it’s difficult to answer these questions without feeling angry or guilty or just sick. The thought of children suffering for any reason is heart-breaking, sometimes sickening. But to think God caused it, on purpose, is abominable.
Without going on a tangent, I’ve had experiences before Jenna was born that rocked me to my core. My past belief system had presented God as a cruel, disciplinarian, who doled out punishment to those bad people who deserved it. I found no peace or comfort with these beliefs. After many months of therapy, reading and reflection, I found a personal belief system that has helped me.
Here’s what I believe. (I’m not trying to convince anyone, just sharing.) I believe that life is chaotic and completely random. Disturbing things happen to people, young and old, everywhere. I don’t believe God causes any of these events, nor does He/She want them to happen. He/She has little control and may even feel sad watching us suffer. I believe that God and angels can bring comfort and try to affect outcomes by trying to influence people, but overall they have little control. When I pray, I watch for subtle answers and that is all. Some people may think that’s really sad, but it helps me cope with Jenna’s illness and treatment. I don’t feel angry at God for making this happen or feel I’m being punished (or my sweet little girl). This is just one of those chaotic, random events and we get to choose who we want to be in the face of it all.
12. Stay in the Present
Our daughter is fighting a disease that could kill her. Her prognosis is good, yet we just don’t know. Things change all the time. Three months ago they said her liver would most likely regenerate after her chemo was finished. Now “it’s only a matter of time” before Jenna will need a liver transplant. We have no idea what will happen and the doctors can’t say for sure either.
If I think too much about what has happened (“I should have done something different”) or what could have happened or what might happen (“what if…”) well, I just freak out. I’m not one of those who can easily imagine a positive outcome, (luckily my husband is) so it’s just better for me to stay in the present… Right now. Today. This week. This month. That’s it. Otherwise I’m terrified. Worried sick. Devastated.
If I start thinking about what might happen, I can bring myself back to today – today Jenna is well enough to be home (or whatever is true about today). Then I feel calm again.
Sometimes this just doesn’t work though. There have been times when Jenna wasn’t okay. She was really, really sick and the only thing I might be able to say about the present is – Jenna is alive and getting amazing care here at the hospital.
Sometimes we’ve been so scared we are in the present because we can think of nothing else.
Comfort may not come as easily to those families whose child did not survive. All I can relate it to were the dark days when Jenna was so very sick. Breathing in and breathing out were the best I could do to stay in the present. And perhaps that is all that might help a broken-hearted family.
Whether you have a sick child or not, staying in the present will bring calm and peace. Don’t waste this precious life on regret, worry or dread. As Martha Graham said, “All that is important is this one moment… Make the moment important, vital, and worth living. Do not let it slip away unnoticed and unused.”
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Here are a couple of excellent related articles:
Five Ways to Support Families Dealing with Childhood Cancer
and
Someone You Know Ill? Watch What You Say and To Whom: How Not To Say The Wrong Thing
Books I found insightful and useful:
Amanda’s Gift: One Family’s Journey Through the Maze of Serious Childhood Illness by Scott Neil MacLellan
Dark Nights of the Soul: A Guide to Finding Your Way Through Life’s Ordeals by Thomas Moore
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