I was hurrying from my classes the other night, on the way to the launch of Wendy’s cartoon at the Boston Society of Architects. There were roughly seventy people there, all there to support the endeavor that took over two years to create, from start to finish. There were some of Wendy’s doctors, some college friends, some neighbors. There were the architects who worked on the cartoon, some administrative types from Massachusetts General Hospital, and other parents from the Family Advisory Council. Wendy brought a half dozen of her closest friends, and wore her Christmas Tree hat to celebrate both the cartoon and the season.
If you told me ten years ago that this is what my life would look like, I would tell you that you were patently insane.
Ten years ago I was living in a small Vermont community, with a perfectly healthy, almost-three-year-old daughter. I had been to Boston for two weekends in my life. I had never heard of Massachusetts General Hospital, knew exactly one architect, had never met someone who had received an organ donation, and had only heard of e-coli from the Jack in the Box outbreak from 1993.
One year later, my almost-four-year-old was fighting for her life, on more pumps than would fit on the pole, with no clear answer what was causing this massive infection that had weakened her heart as well as all of the damage done to her other organs. She spent every holiday in the hospital that year and we lived on and off in Boston for a year and a half in hotels, apartments and hospital rooms.
It just goes to show you that you never know what life is going to throw at you.
Now, we live in a different town, we have different jobs, we have additional friends. I’m on the Family Advisory Council at MGH, we open our homes to strangers through Hospitality Homes, and I’ve met amazing advocates for patients and families in the world of health care.
It has been a very long road, but here are some things that I’ve learned.
Don’t pray for deliverance. Pray for strength.
Make decisions from facts and not fear. When you know you are looking to fight another battle, figure out what you need, and then make it happen. That’s the reason we moved, to be closer to the hospital. We knew that big battles would come in the future, and we wanted to be as prepared as we could possibly be.
Ask for help when you need it. There is an ethos in place that we shouldn’t ask for help, but the fact of the matter is that we all need help sometime, and you need to be able to clearly define what you need when you are going through a crisis. People who love you want to help you, but they don’t know how. Help them to help you by telling them exactly what you need.
Let yourself feel the feelings, and give them a name. If you’re scared say so. If you’re angry, say that too. If you’re nervous, figure out why. Once you name your feelings, they have less power over you because when you name them you are no longer ashamed to be feeling them, and shame makes all of those negative feelings double. Be prepared that others will be surprised when you give a name to these feelings.
Even when you are going through hell, listen to others’ worries and fears. Really listen. They have hard times too. Even when you are going through your worst days listen to the stresses of your friends and give them the space to express them. That is friendship.
Be grateful, even when it’s really hard. Find things to be grateful for. Be grateful for the small steps. Be grateful for the people who support you. Be grateful for the sunrise. Tell people how much they mean to you. Thank people for small actions. It will help the everyday crap that you have to slog through, because we can escape a lot of things, but not bureaucracy and bullshit.
Be open to new experiences, even when they’re hard and you are worried or scared or nervous. I actually have to say to myself, “I am open to this moment. I am open to this experience.”
Give back. When you’re ready. When you can. With what you have.
Know that hard times are going to come. All of our roads are bumpy. But while I don’t believe that everything happens for a reason, I do believe that we do the best we can with what we’ve been given, and then we’re grateful for that too.
Teach your kids that these things are important, and not just with actions, but with the words that go along with them. It encourages you to be a better person and a parent when you actively remember that your kids are watching, they are listening.
Life happens, adulting is hard, coffee helps.
And finally, I’m not sure that being the parent of a chronically ill kid ever gets easier. It is always scary. There is always a feeling helplessness. The difference is, now I know it can be done, whereas before I thought it might be impossible.
That is perhaps the greatest lesson.