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…
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.
2. Let Go and Prioritize
3. Release the Illusion of Control
4. Find Something Beautiful
“…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 and for this time we have with her.
6. People Want to Help, So Let Them
That’s our first 6. The list continues in Part 2…
Here are a couple of excellent related articles:
Someone You Know Ill? Watch What You Say and To Whom: How Not To Say The Wrong Thing by Susan Silk and Barry Goldman
15 Dos and Don’ts For Helping A Friend with a Sick Child in the Hospital by Dr. Karin L. Smithson
7 Things You Don’t Know About A Special Needs Parent by Maria Lin
Books I found insightful and useful:
Amanda’s Gift: One Family’s Journey Through the Maze of Serious Childhood Illness by Scott Neil MacLellan