In my “Inspired Pittsburgh Mommy” series, I feature Pittsburgh mothers who have started unique grassroots-type projects within the city. These projects directly benefit the greater good of Pittsburgh and improve the lives of our children, families, and/or other mothers. The series is my humble effort to create a positive, supportive environment among Pittsburgh mothers. I hope that it will a) help make these projects a success b) motivate other mothers to help support these projects and c) inspire other mothers to make their own dreams a reality. An introduction to the series can be found here.
This time in my “Inspired Pittsburgh Mommy” series I am featuring a local mother named Patricia Vince. Patricia is the founder of Zachary’s Mission, a nonprofit organization helping families with critically ill children in Pittsburgh hospitals and other patient care facilities. I first found out about Patricia and her project from the well-known local blogger and recent Best of the Burgh winner, John Chamberlin of Ya Jagoff.
“She would be a perfect interview for you,” he said. “So much of what she is doing with Zachary’s Mission is influenced by her own experience as a mother.”
As is usually the case, Ya Jagoff was spot-on. I met with Patricia for a conversation at a local coffee shop recently. We laughed. We cried. We really hit it off. And I learned about Zachary, her gone-much-too-soon son, who died at 2 weeks of age from a rare congenital heart defect.
“When your child dies in your arms, it changes you completely,” Patricia told me. “What you choose to do with this experience will define the rest of your life.”
What is Zachary’s Mission?
Our general mission is to help families who have critically ill children in Pittsburgh-area hospitals and other acute care settings. After our experience with Zack, we have firsthand knowledge of the hardships that these families experience. We want to ease their burdens. We want to help them retain some quality of life. And we want these families to understand that others have been through a similar roller coaster and have come through, stronger than ever.
How do you specifically help these families?
Zachary’s Mission has several core components. The first is the distribution of Zack Packs. Zack Packs are custom-made backpacks filled with quality toiletry items, an insulated snack bag filled with goodies, and a beautiful journal. Since many families with sick kids never know where they are going to be (in both a physical and an emotional sense), it is incredibly helpful to have some nice creature comforts and snacks on hand to improve quality of life. Also, we discovered that writing in a journal can be a very therapeutic process when your child is ill or dying.
Besides Zack Packs, we also provide a number of other important services. We make home-cooked meals for families. We provide them with gas cards, cafeteria vouchers, and parking passes. We pay their utility bills for them. As one mother told me the other day, “Most people don’t understand how much comes out of pocket when your child is in the hospital.” The financial assistance aspect of our organization is very helpful to many families.
We also run therapeutic scrapbooking and photo sessions to help families remember their little ones. We have even been known to offer some out-of-the-ordinary assistance like organizing birthday parties or doing Christmas shopping for families.
Which families are eligible to receive assistance through Zachary’s Mission?
We have helped families whose children have a huge range of illnesses from extreme prematurity to rare genetic problems to serious heart defects and everything in between. We don’t limit our services based on any particular factor. However, we do work with social workers and staff to identify families with the greatest need. Any family is potentially eligible if their child is receiving care at the Children’s Hospital of Pittsburgh, The Children’s Home and Lemieux Family Center, West Penn NICU, and the Children’s Institute.
How can members of the community become involved in Zachary’s Mission?
We have had a recent request to dramatically increase the number of Zack Packs that we distribute at local hospitals. In response, we are going to need some community help! We always need people to run toiletry drives, stuff Zack Packs and volunteer at our events. Email us at email@example.com to get in touch about volunteering. Also, you can follow our Facebook page or Twitter account to find new opportunities to get involved. We also invite community members to attend the Zachary’s Mission Gala on November 15 at Longue Vue Club. Finally, you can do something right now! Toyota of Greensburg has generously offered to donate $5000 to the top 4 organizations that receive the most votes on their Facebook page. Go here to vote.
After learning about Zachary’s Mission, I talked with Patricia about Zachary and her experience with a dying child:
Can you tell me a little bit about Zachary?
Zachary was diagnosed in utero with a serious congenital heart defect called a hypoplastic right heart with myocardial sinusoids. We saw a pediatric cardiologist throughout the pregnancy and determined that we had two choices after Zack was born: 1) if he qualified, he could be placed on the heart transplant list or 2) we could provide comfort care only. He was born on June 13, 2008 and initially showed great potential to survive. As a result, he was placed on the list. Unfortunately, everything that we tried to do for him over the next two weeks backfired and he just kept getting sicker and sicker. Eventually, we made the decision to withdraw care. Although I don’t remember the time or the dates very well, I do remember that moment with perfect clarity. Afterwards, we got a chance to hold our little Zack for the first time ever. I’ll never forget his eyes. They were so bright and beautiful. It didn’t take very long and then he was gone…
How did you first become inspired to start Zachary’s Mission?
When I was pregnant with Zack, I got a very beautiful book called “Christmas Jars” by Jason Wright. This book describes the fictional phenomonen of “Christmas Jars,” glass jars filled with coins and bills distributed anonymously to people in need. The only expectation: the recipient will “pay it forward.” One year later, I didn’t have my little boy. But, I did have two glass jars full of small change. We used that money to buy Christmas presents for a family whose child had received a heart-lung transplant. At that moment, Zachary’s Mission was born. We developed the project over the next two years and it officially started in 2010. At this point, we have helped thousands of families.
Finally, I spoke with Patricia about her family and her professional/personal life balance:
How many children do you have?
We have three children, although only two are still with us. My son is 7 and my daughter is 4. Zachary would have been 6.
Are your children a part of Zachary’s Mission?
Yes! Both of my children are involved with Zachary’s Mission. They always tells me that they love to “help sick babies.” One beautiful part of this project for my family: Zachary and his memory have become an even bigger part of our lives since starting it. Every time we bring comfort to a family that is really suffering, I can’t help but think, “This is Zachary’s legacy.”
How do you maintain personal/professional life balance?
Balance? Mmmmm… Hard question. I remind myself on a daily basis to have patience with myself and the whole process. After all, it is a marathon and not a sprint. I sometimes think that Zachary’s Mission could be even further along if I was out networking in the evenings and weekends; however, I have to remind myself that I have two young kids at home, they need their mom, and that is a good thing!
Patricia’s story really struck a personal chord with me. On my very first day of my first clinical rotation in medical school, I sat with a family as their young son was diagnosed with a very rare form of leukemia. I will never forget that boy’s mother. Within a few moments of hearing her son’s poor prognosis, she threw herself onto the table in front of her, arms and hair splayed out, sobbing.
“No! No! No” she wailed, as her entire body shook uncontrollably.
I wasn’t a mom then. But, I am now. And I can not imagine what that nightmare must have felt like for her.
As a medical student, I only spent two weeks with that family. But it was long enough to realize that when a serious illness strikes your child, it turns your world upside down. Huddled together in a hospital room, the family dealt with emotional, financial, and spiritual crises day after day.
Patricia also only had two weeks with her little boy. I imagine they must have been equally as turbulent. She delivered by C-section and he was almost instantly whisked away to Children’s Hospital. She didn’t see him for days. She didn’t even get to hold him until the moment she said good-bye. But, she pumped breast milk the entire time, hoping that one day he would be able to nurse. After he was gone, I can not imagine how she went on…
But somehow, Patricia found the strength to ensure that her little boy’s legacy would live forever. Zachary’s Mission is a testament to her enormous courage and a beautiful tribute to her son.
In the words of another Pittsburgh mom:
“I received one of the Zack Packs at Children’s Hospital. I am a mom of triplet girls and they have never been home. My life is the hospital. I want to thank you for doing this awesome work on behalf of your son. It is people like YOU who make people like ME smile and have hope and comfort. God bless you.”
Thank you, Patricia, for being a beacon of hope to Pittsburgh families who have been devastated by their child’s severe illness. And I am so, SO sorry that you lost your little boy….
“How very quietly you tiptoed into our world. Only a moment you stayed. But what an imprint your footprints have left upon our hearts.”
-Unknown© Copyright 2014 Nadine Champsi, All rights Reserved. Written For: The Pittsburgh Mommy Blog
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