I had a really incredible week last week, first in DC and then in NYC. I was in DC for the second meeting of the Patient Engagement Committee at the Cystic Fibrosis Foundation. The CFF really did an outstanding job gathering this group of patients, parents, doctors & other clinicians, pharmacy reps, insurance companies and drug companies to work together on solutions for enhancing the relationship that each has with the patient to improve outcomes and save lives. I enjoy all things related to these meetings.
The second trip I made last week was to NYC for the kick off meeting of their Clinical Data Research Network. They have brought together the brightest and the best in NYC from 5 of the major medical institutions to share ideas and data to create a network of robust clinical and patient reported data that will help to improve both health and care across the city. Ultimately, this network should serve as a model for the rest of the country and the value of collaboration and data transparency will become evident to all.
When the meeting kicked off, the principal investigator put a picture of her 18mo old twins on the screen. She said that every morning she asks herself if all of the work that she is doing is more important that spending time with her babies. And while it is definitely a balance, she believes that the work she is doing will be so instrumental in changing healthcare for the better that she makes the sacrifice. I thought about the question for a little bit. It's not easy for our family when I am working at Children's or taking phone calls at all hours of the day. When I do travel for a night or two, it sends our family into a little tailspin as they try to figure out where the lady who runs the show has gone. My amazing husband does a fantastic job of keeping everything in line when I am away, but everyone is out of sorts when one of us isn't there. We are a team, the 6 of us. And I thought about whether or not all that I do is worth it, worth leaving my family for, for an hour or a day or even just a dinner. The answer for me is yes, it's worth it because this is what is going to save his life.
Some other random thoughts about my days....
I have good days and I have bad days (more good than bad), but I always keep going, trying to figure out what can be done so that I don't lose him. In January when we were getting bad test results, I was running out the door when I slipped on some ice and bit it in my driveway. I wanted to scream and curse the world but I had to keep going. After school, everyone is tired and crying, wanting drinks and snacks and attention. I must get a breathing treatment started. I must call the pharmacy and the hospital to update our insurance information. In perpetual motion, I step on a plug. OUCH!!!! Again, I want to cry and curse this cruel world but I have to keep on going. Start dinner, do homework, bathe children.
Everyday at 3pm I put on my shoes and some old jeans, a free fleece that I "won" fundraising. I'd love to look nicer like the other moms at pick-up. I wish I had time to do my hair and makeup, money to buy fashionable clothes, cute boots. But I spend most of my money on a babysitter while I'm out shouting from the rooftops "We have to do better. We have to move faster. What can I do so that I don't lose him?!"
I dig hopelessly through a bag of candy hearts while running out that door at 3pm, because when I give my 5yr old a candy heart that says "My Girl" on it in the lobby of her school, the smile that overtakes her tired little face makes my day better.
We have to leave for Girl Scouts. Only one has shoes on. Only one is missing pants. Luckily no one has to get out of the car for the quick drop before we return home to pull together a dinner and then head back out to pick her up because it's only 19 degrees out and those chubby pantless legs have got to be cold. Sometimes I think we look homeless - mismatched clothes, hair uncombed. Our house usually looks like squatters have inhabited it. Do I wish it was cleaner? Hell yeah I do! But this girl is out of time and energy, and at the end of the day there are just more important things in life.
As we sit down to eat, the phone rings. Vietnam Vets, wondering if we have anything to donate. "Yes!! Bring your truck, come in and take whatever you want, spring cleaning simplified", I think. I agree to a donation, but then think about when I will find the time to dig through the ruins to pull out a bag of toys that we don't use anymore, or a pile of clothes that we've outgrown. I'll find something for them.
When I have to say no to a social event or a fundraiser or any other kind of fun activity in my life it's definitely not because I don't want to do it. I want to go out with friends. I want to have some drinks, stay out too late, laugh. But being less than 100% when I wake up the next morning sets me back more than just that one day.
So much of what I do really is stuff that I want to do. I love doing what I'm doing, and I wish I could do so much more. I hate having to prioritize treatments and appointments and phone calls over the fun stuff, but we do what we have to do for our family right now.
I know that was very random, but just wanted to get some thoughts out. Oh yeah, and my heart is still beating for anyone who cares. More cardiology follow up in the next week(s) but until then we will just keep on keepin' on.