Dear Sister-Mama,
Welcome to the trenches.
I know I’ve said a lot of this before, but today, it needs to be said again: Each despairing, awful pit looks slightly different, but we’re all down here, in here together.
Your emotional and physical survival of everything from the next breath to the next decade will be almost as trial-and-error-ridden as your sweet baby’s treatment journey – just know that right now and know it’s okay too. It’s normal. Well, more “normal” really. Life circumstances just tried to cut you into tiny pieces with words alone – words like “cancer” – and continuing to breathe in these days is a victory not to be discounted.
Self-care when your baby’s in the ICU seems wrong and even selfish, but it’s not, I assure you. No matter how your inner voice wants to condemn you for anything short of laying yourself out next to them in the same pain they’re experiencing, please, please remember that your darling child’s care is only as strong as you are. You are the advocate and the voice, and 99 times out of 100, the responsibility of medications, schedules, feedings, sterilizations, etc, will fall to you. I’ve found it’s much easier to deal with it when I can see straight.
So, with that in mind…
Rest when you can. Trust me, there’s a reason sleep deprivation is used as an alternative questioning tactic in military protocol. When Chase was in treatment, I would have confessed to anything and actually had to stop driving because I was seeing wavy lines and shadows in the corners of my vision. Having a pediatric cancer patient is not unlike having a brand new baby in this way – please try and sleep when they sleep. You’ll need it.
Walk out of the hospital. For real. Even just down to the sidewalk in front of the building and then back. It sounds like the tiniest thing, but if you don’t make a conscious effort to incorporate the outside world in even minuscule ways, it will shrink and then go away entirely – leaving you with nothing but the cancer – which isn’t mentally healthy. And, let’s face it: who among us wants to give this awful terrorist of a disease that kind of credence in our lives? [hint: not me]
Seek a community. Church, friends, family, other cancer patients. Get involved on some level. Don’t let cancer take up all your mental and emotional energy. It doesn’t deserve that much from you. See also: my previous point on world-shrinkage.
See your dentist. Yes, I said it and meant it too. There’s a reason I don’t like to smile with my lips open. When you spend days being shuffled from room to room for appointments and rushing to emergency rooms, you’re just trying to remember to breathe, and maybe if you have an extra second; eat. There’s very little time for thoughts of flossing. So, from me to you: treatment will take it out of you on so many levels, but if at all possible, remember you have a dentist.
Have a mental safety net. Whether you see a counselor, talk to your spouse, or sit down with a dear friend, have someone there to keep you from feeling like you’re going crazy. Cancer is truly a war of it’s own kind. Your body responses will become conditioned to incredible long-term, high-stress scenarios and evidence points to this type of emotional and physical toll not being healthy for the brain. Some universities and medical institutions are even starting to pick up study links between traumatic pediatric care-giving situations and high rates of post traumatic stress – the same thing soldiers who’ve been to war face. This area is no joke, dear sister-mamas. Don’t be afraid to get help. You’re not going crazy. Your life is crazy. And no matter what you’re feeling, YOU ARE NOT ALONE.
There are so many other things I secretly want to throw out for you: go out with friends, have friends come to you, eat chocolate, read a book, cry, laugh, write, take a long walk… But the last thing you need right now is one more person telling you something you need to remember – yet one more alteration you’ll be making to your life. Psh… Chances are good you’ve already experienced enough alterations to last for three life times.
Whether you’re arms will one day be empty or atypically full, life is desperately short. No matter the kind of cancer story you’re called to, it will undoubtedly be a life-long marathon, not a sprint. So, stay the course, dear sister-mama. You are not alone.
All my love from the trenches,
Ellie
