Guest Blogger Chris Perez knows first hand that even the littlest action can have a big impact. The Pediatric Congenital Heart Association offers many ways to get involved. Click on any of the following for more information or to get involved: volunteering, contacting your lawmakers, sharing your story. By working together, even the smallest of actions can help Conquer CHD.
Can You Hear Me Now? Good.
Remember this guy?
Yes, I’m bringing back the Verizon Wireless Guy, who used to walk around saying “Can you hear me now? Good.” It was all about the strength of Verizon’s network and the ability to be heard clearly wherever you are.
Stories about heart warriors are always struggling to be heard in a busy and noisy world. Still, they need to be heard, and we want them to be heard. As a heart parent, I’m sure you’re connected with lots of other heart parents and it seems like they’re doing some spectacular things like speaking at conferences or even traveling to lobby with government. And you…you can barely get out of the house. You just want to be heard. Well fear not, heart parent: you can still be heard on a smaller – and still VERY important – scale.
It’s OK to Start Small
While your first inclination is to go BIG – this is about your child, after all – lots of big things start small. Doesn’t a fire start with a tiny spark? So maybe you can’t make a trip to Washington DC or to your state’s Capital to do some lobbying. All is not lost: you can still do it at home. Start with your Mayor or City Council. Schedule some time to tell your story and see if your local government can help pass that story along. You’ll find that they love to hear from their constituents and possibly even have much more time to listen to you than someone in a larger level of government. I remember reaching out to the Mayor of Charlotte regarding a proclamation for CHD Awareness Week and in a week or so I actually received one in the mail, which was really awesome!
Local news is a great way to share your story too: tv news, the newspaper, and even those smaller, local papers are great. People complain that the news is full of bad stories, but I promise you they love good news just as much as you do. There’s a weekly paper in my area that has done a really awesome job of sharing my son’s journey and people do, in fact, read that stuff!
If you’re shy and those things aren’t for you, then maybe you should consider starting a blog of your own. I can attest to the power of the written word only through a blog: it’s given me an opportunity to connect with people throughout the world. And all you have to do is type! Likewise I encourage you to share your story with the Pediatric Congenital Heart Association: just go to http://conqueringchd.org// and click on “Share Your Story,” and off you go. You never know how your words can uplift someone who needs it.
Weaving yourself into the lives of others is a great way to share your story in a meaningful way. Of course, I definitely encourage you to stay involved with the efforts of the PCHA: educate yourself, share with others, and advocate for more CHD research. Take some time to look into local groups as well: maybe it’s a patient/family advisory committee through the Children’s Hospital, a support group, or a local chapter of a group like Mended Little Hearts. These are opportunities to support and be supported and I can’t stress enough the importance of this. My local group is called Camp Luck and they do amazing work that involves supporting families and running a medically-supervised camp for heart kids. They hold lots of events throughout the year where my kiddos can come and play and you know you’re in the room with family: everyone understands you. We’ve had the chance to meet some really cool people and when we get to share in our experiences, we find we get stronger.
Maybe – just maybe – you have some extra time on your hands. What to do with it? Volunteer! There are a lot of heart parents who volunteer at their local hospital and it’s a wonderful way to give back. There is tremendous value in being a volunteer, both personally and to the organization you’re supporting. People also listen to volunteers: if you’re passionately involved at the Children’s Hospital, for example, it can open doors to sharing your story and helping people out because that passion will show!
Make Sure Your Opinion Matters
Ok Heart Parents…let’s be honest with one another here. After a hospital stay, you get home and work on getting back to normal. In the mail comes…dun dun dunnnn…a survey. You throw it away, don’t you? Come on, admit it!
Well I have some news for you…these surveys are important…REALLY important!
You see one of the big changes in healthcare today involves the patient experience. There’s the realization that people come into the hospital automatically expecting excellent medical care. Duh. I mean you don’t go in and say things like “I hope they operate on the correct knee today!” Good quality care is a given, and it’s something that healthcare has been touting for years. While that’s still important, healthcare is realizing that patients and their families have to actually be treated like human beings. Have you had a rotten experience in the hospital? Tell someone. Feel like you don’t matter as a parent? TELL SOMEONE! Hospitals now have staff who handle these things day in and day out…and it’s not a mindless complaint process: they dig into data and look into root causes of problems in healthcare…and ultimately they work to fix that culture so the complete and total experience in the hospital is the best it can be.
So where do you think the hospital staffers get their data? You guessed it: SURVEYS! That’s why they’re so important: if your hospital is awesome, tell them they’re awesome…it really goes a long way. If it wasn’t the best experience, say so in your survey, because nowadays a lot of federal reimbursement for hospitals is tied to patient experience scores and goals. So it’s in their best interest to give you the best experience possible. Now that doesn’t mean you should demand ridiculous things from your medical team, but rather they should be treating you with human connection, empathy and compassion. They should communicate, they should treat you as if you were their loved one, they should include you in the whole process. If they don’t, speak up!
Help out your local Children’s Hospital by filling out your surveys and providing good, honest feedback…it’s how your story can help them improve!
It Only Takes a Spark
What does it take to have an impact with your story? Not a whole lot. You don’t have to go big or go home: you can start small and let the fire build. I really want to encourage you to reach out to local media or local government, get involved in your community, and make your voice heard through surveys!
Chris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012. He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes. You can visit Chris’ blog at http://hlhsdad.com.