My dearest Fellow Parent and Partner in the Awful Fight,
First of all, you are so brave. Even when you feel like a huddled, sobbing child yourself – never forget, you are fulfilling your role as the lover and caretaker of your child and you are just so, so brave.
There are so many places I could start, and in truth, this could probably be a volume rather than a letter, but I’ll try and keep it short as I know you’re probably already on overload.
First off, they almost never tell you that sitting hunched and weary next to a hospital bed is going to feel not only normal, but appropriate and right, and leaving the room (let alone the floor or the building) might fill you with all sorts of things, not the least of which is dread. Nobody tells you that it might feel strange to breathe and function in the normal world when your baby is attached to IVs and monitors for their life. But do it anyway. Give yourself a place to breathe as if your own life depends on it – even if it’s forcing yourself out onto the city street with shaking knees and eyes filled with tears for just a minute or two.
I know it feels like life is ending, but it isn’t, so try not to let it close in on you. Your perspective has been drastically, irrevocably altered, but it is not gone altogether. Fight against your irrational fears (because trust me, there are plenty of rational ones in our scenarios), and keep pushing into it all to find your “normal” – a sliding-scale word that will likely henceforth only be referred to with quotation marks in your life. Some days, going to the cafeteria for a coffee is going to feel like the pre-cancer equivalent of cleaning your whole house and running all the errands. Victory is sweet.
Also, If you find yourself able to go see one doctor for yourself – make it a dentist. Do I sound crazy? I probably am. It’s hard to think about teeth at all when your baby’s hair is falling out or their nourishment comes through a tube in their veins. Sometimes you spend the day in the hospital and are home for only a few hours before going back and sitting in the ER until 2AM. On these days, self care of any kind feels counterintuitive, but trust me, you don’t want to deal with all the cavities when you resurface from treatment in two or three years, so if you master the whole “leaving the hospital thing”, go see your dentist. I’m saying these crazy things because I care, really.
Next, or probably in truth, even before you go to your dentist, find your “circle”. When it goes public that your child has cancer, a lot of people will want a piece of you and your story. People you haven’t heard from in decades will come out of the woodwork just to let you know they love you and are praying for you and want to do something for your family. It’s amazing and a little embarrassing that something so awful brings so much “special”. However, not all these people are in your fight for the long haul or will speak into your life (as opposed to taking a piece of it), so find your long haulers. One, two, six…the few, the trusted, the prayer warriors, the 24/7 texting-phone-always-on-friends who say they love you no matter what, will help you no matter the time or demand, and only give advice when you ask. These are your people for the marathon. They will be, as my dear friend Judi says: your “stretcher bearers”. Because you will need the holding up – desperately.
Speaking of needs… it’s okay to be a hot mess. We live in the generation of perfect parents with all things filtered and pinned and the truth is that it’s all too easy to forget that life is messy. No one parent can do all that is thrown at them in a day, let alone all that is expected, and then you add a cancer diagnosis to this guilt-riddled scenario? Well, say goodbye to sanity! Okay, so perhaps that’s a slightly dramatic comment, but I really mean the heart of it. We are broken human beings trying to care for other broken human beings and our bodies are fearfully and wonderfully designed, but year after year of extreme stress, emotional turmoil, sleep deprivation and facing terminal situations all take their tole. I guess what I’m getting at is this: there are many ways to go through this journey, so don’t look to the parent next to you – look to yourself, and don’t be afraid to get help if you need it. Anxiety, depression, and stress are real and devastating on an emotional and physical level. We were never created for this and anyone who Facebook memes you to just be strong…well, it’s nice, but the truth is we’re weak…and that’s not all bad. If you learn anything from cancer, let it be this: life is too short and too precious to be anything other than raw and authentic. Don’t pretend. You’ll be amazed how often your struggles are shared and your words identified with – because we’re all broken.
There are so many other little things I’d love to tell you…from the secret to finding washing machines in the hospital to making time for spiritual renewal, but for now, I’ll close – simply reminding you again that you are so brave and you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.
Signed with love from the trenches,
Ellie
