Archive for May, 2013

Tomorrow morning Jenna will have her 4th biopsy procedure. Or is it her 5th? Or 6th? She’s had so many in the past 8 months I’ve lost track. I’m trying not to think about that point where we’ll hand her over to the anesthesiologist, someone we may recognize but don’t really know, and wait and wait and wait, to be with her again.

You’d think by now I’d be used to at all this, but I’m so not. Even though we’re 8 months into Jenna’s treatment, I still often feel overwhelmed and afraid and powerless. But there are things we’ve been doing that have helped us cope and find peace during this ordeal. I’ve been compiling this list for a couple of months. I thought if we could help just one family going through a similar experience, it’d be worth writing. So, this is the first installment…

Let me just say, we’re not experts, and not saying these will work for everyone. These are just things that have helped us, a lot of the time. We’ve been derailed by plenty of things… middle of the night trips to ER, sleepless nights, extended hospital stays, unexpected procedures, collection calls, unsuccessful treatments, new diagnoses, even a headache or helping our son finish his homework. Sometimes the stress is just too much to manage and there’s nothing to do except feel it… With that said, here are our Top 6 strategies…

1.  Rest

At 20 months, Jenna still wakes often at night and has never slept through the night. So I still follow the advice I was given when she was born: sleep when your baby sleeps. Not sleeping well night after night, compounded with the stress of her treatment, leaves me exhausted. When I’m exhausted, it’s much harder to take care of Jenna, myself and my family. I feel hazy, impatient and often depressed, my body hurts and I get headaches. Rest is imperative. Sleeping of course qualifies as rest and so does just lying down for a while. At our house, the opportunity to rest trumps almost anything else.

TiffJennaJan2013

2.  Let Go and Prioritize 

I can’t possibly get everything done that I used to and take care of Jenna. It’s been necessary to let many things go that I used to be able to do, including my work. We’ve had to prioritize and delegate to keep our sanity. Under the circumstances, prioritizing is quite simple… What’s more important? Holding Jenna when she doesn’t feel good or doing dishes? Taking a nap with Jenna or folding the laundry? Spending one-on-one time with my son or mopping the floor? Having a date with my husband or cleaning the house? Easy. The most important things right now are taking care of our family. Period.
Of course, there are things that still need to get done. My husband has to work. Meals need to be made. Our son has school and other commitments. There are still plenty of things that need to get done that we do ourselves. But we are continuously evaluating what is most important, what can be delegated and what we can let go of for a while. (See #6 for help with delegating)

3.  Release the Illusion of Control

Watching Jenna fight this disease, what she has to go through, is often disturbing. Her chemotherapy treatment, the tests she has to have, the medicines she has to take, her reactions to drugs, the length of our hospital stays, Jenna’s getting through this, all are completely out of my control. I remember when the doctors suggested she needed a feeding tube. I was so upset, and fought them for days until I realized I didn’t want to lose control of another thing. I wanted to feel in control of something, anything, at a time that I felt completely powerless.
I find when I’m feeling upset it’s usually over something I have no control over… Not sleeping, my son’s grumpy mood, the insurance not paying bills, my husband’s work schedule. Writing everything down I want to control but can’t, helps me get out of my head and makes it easier to let go. The reality is, I have control over almost nothing and the sooner I come to terms with that, the sooner I feel calm and peaceful again.

4.  Find Something Beautiful

I love this quote from the book “Eat Pray Love” – “…when you sense a faint potentiality for happiness after such dark times you must grab onto the ankles of that happiness and not let go until it drags you face-first out of the dirt-–this is not selfishness, but obligation. You were given life; it is your duty (and also your entitlement as a human being) to find something beautiful within life, no matter how slight.”

I can focus on how hard this is (and I do more than I like to admit) or I can look for happiness and beauty wherever I can… Jenna’s toothy grin. An unexpected hug from my son. Holding hands with my husband. Kindness and generosity from strangers.

Another way of approaching this is by being grateful, or as we tell our son, having an attitude of gratitude. To help me stay in a grateful, positive mindset, I’ve signed up for a daily gratitude journal through grateful160.com. Each day I receive a “nudge” to “count my blessings.” It’s free so it’s worth a try. There is always something to be grateful for… Big fluffy snowflakes. Spring flowers. Jenna’s care team. The dishes being done. My husband. My son. Jenna having a good day…. Now you try…

During the first few months of Jenna’s treatment, my husband took on a 30-Day Gratitude Challenge, sending a heartfelt greeting card everyday for 30 days. He found that during all the craziness each day he could stop, think about someone else and what he was grateful for about them, and simply send them a card.

Jenna has a life-threatening disease. We can hate this whole situation (and often do) and some days it takes a lot of effort to find something beautiful, to be grateful for anything, but it’s worth the effort. And if there’s nothing else, we are always grateful Jenna is alive.

5.  Perspective
There is always someone who has it worse off than us. So many people tell us “I could never do what you’re doing” or “I don’t know how you do it”. We feel the same about many others. All we have to do is look around, especially when we’re at the hospital. We don’t have to look far to find someone going through something that makes what we’re going through seem easy.
6.  People Want to Help, So Let Them
Asking for help is difficult sometimes. We want to be able to handle everything ourselves, be self-sufficient and independent. But when we realized Jenna would be in the hospital for a while and in treatment for many months, we quickly knew we were in over our heads and asking for help became necessary. At first, I didn’t know what exactly we needed help with, I just knew we did. Eventually I was able to articulate what we needed and kept an ongoing mental list so when anyone asked “What do you need?” or “How can I help?” I could give them options. Man, it felt good! And things were taken care of because people wanted to help!
Once we were sort of in the swing of things, we didn’t need as much help. But people still wanted to help. And people who don’t live nearby felt particularly helpless. So we setup a donation account* for Jenna. At first, I felt weird about asking for money. But then I realized how powerless many people felt seeing us go through this and not being able to do anything. The donations poured in and we have been so touched by friends, family and even complete strangers’ generosity. And, frankly, we have needed the money. In spite of insurance, it’s been shocking how the expenses and bills have piled up. Finding ways to let people help is important, even if we feel uncomfortable asking.

That’s our first 6. The list continues in Part 2

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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

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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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*Since publishing we’ve had people ask about our donation account so I’m providing the link here.

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