Family advocates for children in Washington, D.C.

familyphoto211

Angela, Paul, Anna, Hope and Abigail Petr

With summer approaching, it is easy to be cheerful, but my family is feeling especially blessed and content. We are traveling to Washington, D.C., as family representatives of Children’s Hospital of Wisconsin, and in doing so, have been reminded of our many reasons to be grateful.

It was a little more than four years ago that we delivered our beautiful twin girls, knowing the chain of events to follow would be trying. One of our twins was diagnosed with a complex heart defect in utero and all research led us to seek help from Children’s Hospital. Wonderful professionals held our hands and prepared us for the road to follow. The diagnosis was crushing, but it would have been unimaginable without the support and reassurance we received from the talented and compassionate team at Children’s Hospital. We felt it a near miracle to discover that of all the heart centers in the world, Children’s Hospital in Milwaukee presented the best outcomes for children with our daughter’s condition. We named our daughter “Hope” because we were given so much of that.

We are advocates for Children’s Hospital for some obvious reasons, and for some less obvious reasons, too. The Herma Heart Center at Children’s Hospital does tremendous things and has outcomes no other centers can boast worldwide. Most importantly, we were given “Hope” from special people, not because it is their job, but because they are incredibly committed, passionate and self-sacrificing people.

We leave for Washington, D.C. today and feel honored to meet with legislators with the goal of sharing our story and thanking them for past and continued support. After all, Children’s Hospital relies on support from many to provide the outstanding services available to everyone. Many of you reading this could tell similar stories, and for that reason, we feel especially privileged to be acting as representatives. We will do our best to communicate the story we all share.

We hope our visit advocating for Children’s Hospital will be successful. We certainly are excited.

Learn more about National Association of Children’s Hospitals Advocacy Day.

~ The Petr family, guest bloggers

Comments

Family advocates for children in Washington, D.C. — 6 Comments

  1. Children’s Hospital of Wisconsin will be immensely proud of how well your family will represent them in D.C. Your family’s story is amazing and we know those three girls will charm our nation’s capital! We can’t wait to read more about your trip.
    -The Pingels

  2. The Petr family sends a warm hello from Washington D.C. After a long but uneventful (we like the uneventful part) day of travel, our family had a remarkably fun afternoon and evening getting settled and oriented in our nation’s capital. From a child’s perspective, it was a huge day. We drove two hours to the airport before the birds were up, flew to D.C. in the airplane, took a shuttle to the Metro, and then rode the train to the hotel on Pennsylvania Avenue. Planes, trains, automobiles and more. Beyond that, we were able to squeeze in a dip in the pool, which we all know to be the most important consideration when staying at a hotel, at least if you are under the age of 12.

    Almost by accident, we stumbled upon the Washington Monument, the Mall, the Capital Building and the Smithsonian. Tomorrow may hold the National Zoo, the Natural History Museum, and who knows what else. Most importantly, though, we plan to have breakfast with Herb Kohl, and hope to share our experiences with him and thank him for past support of Children’s Hospital. Our sweet Hope and her proud sisters will do their best to charm him and show him what his support means to families like ours.

    We watched as other families from across the country arrived at the hotel, and as we always do when at Children’s Hospital or related events, we feel grateful for how well Hope is doing. We swam in the pool with a girl who had lost much of her hair, likely from chemo. We saw children who are much more affected by their illnesses on a daily basis, and they are so very brave. A special understanding passes between the parents, when they notice Hope’s scar on her chest, where it has been opened three times to repair her unusually plumbed heart. We understand hardship and worry, too. We have been so blessed to come out the other end with a daughter who keeps up with her loyal twin sister, loves dancing, butterflies, puppies and pickles.

    So, today was a good day. We look forward to expressing our gratitude to our legislators tomorrow and Thursday, because it is one very small way we are able to pay it forward, and feel good knowing Children’s Hospital will continue to improve the lives of so many. After all, we will never forget, we were given “Hope.”

    Until tomorrow, thanks for reading. Good night, all.

    Angela Petr

    P.S. Anna, our seven year old, still thinks we are meeting Obama. I love the optimism. One never knows!

  3. Petr Family,
    I am a mother of children who grew up receiving loving care at Children’s Hospital. I am also a nurse, working in the Special Needs Program & the Family Resource Center. I had to take a moment tonight, after reading about your family’s trip to D.C., to thank you for sharing your story. My sons only had a story because of the outstanding care they received from Children’s & our community. And so, I am very touched to know your family traveled to D.C., to advocate for our hospital and to represent all of our stories.
    Thank you and best wishes.
    anne
    P.S. I am going to cross my fingers that Anna meets President Obama!

  4. Like most who visit Washington DC, we are feeling very inspired. The monuments will do that to you – and just the immensity of the architecture and design is overwhelming. Anyone who has been here can attest to these things, so I am not saying anything new. But truly, the greatest source of inspiration today came from joining 37 other families in celebration of our children, our common denominators. We met these families for the first time this evening, which was a night my girls will always remember. They will remember having their faces painted, caricatures created, photos superimposed to look like we posed with President Obama, the magician and crazy dancing.

    What I hope they will remember most is the group of wonderful, unique and vibrant children they met tonight. They danced with kids who were in some ways strangers, but in others, friends. Each child offers a story about their life, and how much they were helped by special people at Children’s Hospitals across the country. All families present can tell stories of both hardship and joy, all ending with gratitude for a place like Children’s Hospital.

    Each family came to Washington DC to share incredibly poignant stories with legislators, drawing awareness to pediatric health care needs and to offer thanks for past efforts in support of Children’s Hospitals. Today we did this with Senator Herb Kohl. We attached Hope’s sweet little face to Children’s Hospital and what it does for families. Abigail, Hope’s twin (4 years old), also told Senator Kohl she would like to play for his basketball team (he owns the Milwaukee Bucks, if you are not a Wisconsinite). He wondered if he would get a discount if he signed her now.

    Tomorrow is a big day. We plan to meet with Senator Feingold’s office, Congressman Sensenbrenner’s office, Congressman Kagen’s office, Congressman Obey’s office and Congresswoman Tammy Baldwin’s office. I hope the girls can hold out that long. There will be a big carrot dangling out there, which is likely the National Zoo. And some good snacks along the way.

    I have been extraordinarily impressed with the professionals from Children’s Hospital of Milwaukee who traveled to DC with us. They have been so kind, treating us like royalty. Their jobs are so critical, and we are thankful such capable people are “on the job.” Their work goes well beyond helping children who are sick and need treatment. Of course that help is offered. What many of us do not see is the work that happens to prevent childhood illness in the first place. It is inspiring to see such a group of committed professionals. The effort put forward to improve health care for children is tremendous, and we will all be affected by such important work. On a different note, we were also impressed by how much they cared about our kids. Taking care of our kids was a group effort today, and their thoughtfulness is much appreciated.

    We look forward to another fulfilling day, and will be happy to feel like we played a small role in assisting such an important institution, which is Children’s Hospital.

  5. Good evening from Washington DC. Our day started off early, with a full slate of scheduled meetings. We met with the offices of Senator Russ Feingold, Congressman Jim Sensenbrenner, Congressman David Obey, Congressman Steve Kagen and Congresswoman Tammy Baldwin. It is so encouraging to see the work they all do to support Children’s Hospital. During a time such as this, when historic health care reform is debated, it is critical to remind those in positions of influence to remember pediatric health care needs. Hope is a perfect example of a child who has benefited from highly specialized pediatric care necessary for children across the country. We were surprised to learn that at Children’s Hospital of Wisconsin in Milwaukee, 40 percent of patients are on Medicaid. What’s more, many health issues causing hospitalization could have been prevented with better routine health care. There is much work to do, and it is an exciting time to do it, as health care reform is at the top of President Obama’s domestic agenda.

    We have been consistently impressed by those professionals from Children’s Hospital. Their commitment to their job is admirable. We took turns carrying the girls around Capital Hill, passing them from one tired set of arms to a fresh set of arms while passing through the labyrinth of passageways underneath the Senate and House. Thank you to Jennifer, Michelle, Jody, Erin, Tom and Bill on Capital Hill. Your kindness and interest in our girls was appreciated. We Petrs all received quite an education, and feel privileged to have witnessed our legislators in action. It is quite inspiring. When in a representative’s office, a bell rings when there is a vote on the floor. It was a busy day, with dozens of votes cast, and it got to be so old hat that Anna, our oldest, would say in a humdrum voice, as if she is on the Hill every day, “another vote.” A great way to learn about democracy.

    We made some new friends, and have been honored to represent Children’s Hospital. On our part, it is easy. It feels good to think we helped in some small way, but we know our family gained more from this trip than we offered, feeling very uplifted and inspired. We look forward to finding ways to contribute on a more local level. Coming to D.C. will do that to people. That’s how our system is supposed to work. We’ll give it a try.

    So, tomorrow is all about fun. Our tour of the White House, which is quite coveted, is at 8:30 a.m. That’s Anna’s most likely chance to meet Obama. Keep your fingers crossed. After that is the National Zoo. Pandas and a baby gorilla. What a day. Following that, it is home again, home again, jiggity jig. We have three tired girls, and some sore feet, but we are glad for all of that, because this trip will go down in the books as a truly amazing opportunity.

    Signing off from our nation’s capital, thanks for following along.