MISSION STORY SLAM PODCAST

HOST: Michael Schweisheimer, Founder, PWPvideo

GUEST:  Martha Sharkey, Executive Director, Today Is A Good Day

PRODUCER: David Winston

 Michael Schweisheimer: Welcome back to the mission story. Slam podcast brought to you by P WP video. I'm Michael Schweisheimer, the executive producer at PWP video and mission story slam. We start a mission story slam to share the stories of the organizations that we serve at PWP video. Those include nonprofits, B corporations, triple bottom line companies and sustainable organizations.  People on a mission to make the world a better place. After a couple of years of virtual story slams, we are ready to get back together in person at yards brewing company in Philadelphia. Tickets are available now for mission story, slam seven happening on Wednesday evening, September 21st, the theme is thrive.

[00:00:55] And Chris Satullo will be back in person as our MC he'll pick the names of 10 storytellers out of a hat, and we'll all get to enjoy their stories as they compete for a $250 donation to their favorite nonprofit. Our judges include Jamila Harris Morrison, the executive director of achievability Sharon Gallagher, principle of social impact communications firm, Sage communications, and the founder of yards brewing company, Tom Kehoe.

[00:01:20] The audience will also select the Y P TC crowd favorite prize for a $100 donation. Yes, your part-time controller LLC has joined us as an ally sponsor of mission story. Our podcast guest today was the winner of one of our virtual slams back in 2021. First person arts invited us to be part of their spring festival.

[00:01:40] So we held mission story, slam six, with the theme. What's next. We spoke to winner Martha Sharkey last summer, in case anything sounds a bit dated. Martha is the founder of the nonprofit. Today is a good day. I think the best way to introduce Martha and her work is to listen to her winning story.

[00:01:56] Martha Sharkey: What's next is definitely a phrase that so many of us can relate to.

[00:02:01] It's the what's next? That takes us to our next chapter and perhaps our calling in life. So now I'd like to share a little bit about our family's personal story in July, 2010, my husband and I were thrilled to learn that we were expecting for the first time. We soon found out that we were expecting identical twin girls.

[00:02:21] And we thought like so many that you got pregnant, you had a baby, you started a family. And that certainly is what happens for many. That is not how our journey went. Our daughters were due March 8th, 2011. And everything was going along smoothly until November 9th, 2010. I was working at the Franklin Institute at the time.

[00:02:43] Something didn't feel right. And I called the doctor and said, Hey, you know, something's not right. They said, come in, we'll check you out. Make sure everything's okay. I grabbed my folder of work, looked at my director and. I'll see you tomorrow. And that was the first day that our lives changed forever. I was admitted to the hospital at 23 weeks and zero days doctors came in to talk to us and said, we're going to try and keep you pregnant as long as possible because every day, every hour, every minute counts.

[00:03:13] What was next for our family was trying to stay pregnant. We had planned to spend Thanksgiving in that hospital room, the holidays, and to kick off the new year because our daughters were not due for another several months. But that is not how our journey went. And just five days later, Claire Josephine and Mary Gladys joined us at 23 weeks and five days, Claire weighed one pound, two ounces, and Mary Wade, one pound, four ounces, and our what's next was being launched into the overwhelming.

[00:03:45] Isolating unknown world of the neonatal intensive care unit. We started each day with the motto one day at a time because we truly did not know what each day would bring. And just 14 days later, our daughter, Mary, our stronger twin birth, she earned her wings. And as we said goodbye to her at two 15 in the afternoon, on the Sunday after Thanksgiving.

[00:04:07] We went back to our daughter, Claire, who was continuing to fight day by day, hour by hour. And I'm proud to share with you that Claire came home after 103 days in the NICU at Abington hospital. But what we learned from that extended stay in the NICU was that there was a real gap in care for parents who were traveling this journey.

[00:04:28] And we always knew that we would wanna give back in some way. So what was next for our family? Was creating a local nonprofit organization today is a good day to help families navigating the NICU in some of their darkest moments. And at the beginning we focused on premature birth, but as our family's story changed and expanded, we went on to welcome a full term baby girl in 2015.

[00:04:55] And in 2018, learned that we were expecting a son. Very exciting for our family. At 14 weeks, he was diagnosed with trisomy 18, which was a devastating prognosis for us. I was able to carry him until 34 weeks and we had him with us for 91 minutes. So his sisters were able to meet him and read to him and sing to him.

[00:05:18] And our family was able to be with him. But what we learned from. Experience was that we wanted to make sure that the work we were doing with today is a good day, was not only helping families who experienced premature birth, but families who experienced the NICU chromosome lab, normalities issues with digestion or respiratory challenges.

[00:05:39] Wanted to make sure we were serving all of those families. So what was next, personally, throughout this journey was taking a huge leap of faith. I stepped down from my role as the director of the Chestnut hill business district to focus fully on advancing the mission. And I'm so glad that I made that jump.

[00:05:59] We were able to expand our reach, to serve NICU families in 10 hospitals throughout the greater Philadelphia region and beyond we've been able to launch a podcast series, pivot our programs during COVID 19 to serve families virtually. And we have a lot more in the works, but I think the biggest lesson that I've learned.

[00:06:22] From what's next is you never know where that chapter is going to take you and I have to tell you, I can't wait to see what's

[00:06:31] Michael: next. Martha Sharkey. Thank you for joining me on the podcast and thank you so much for sharing your personal journey. So I wanna start out by finding how Claire is doing.

[00:06:42] Martha: Oh, thank you, Michael and, thank you for having me today.

[00:06:44] What an honor, it was to be a part of mission story slam and to receive the $250 donation to support the mission of today is a good day. We are so grateful and thank you for asking about Claire. She is. Doing great. She is just finishing up fourth grade. She swims several nights a week at the CROC center in Philadelphia, and she truly is our walking, talking miracle.

[00:07:10] We're just so proud of how far she has come in her past 10 years of life.

[00:07:15] Michael: That is so, so wonderful to hear your story is tough. And I definitely wanted to talk about Claire because I know that she's clearly the amazing outcome from your journey. And I also wanna ask about your second daughter, Martha.

[00:07:28] Martha: Yes. Thank you. Martha Rose is. Five. She is the fifth Martha in our family, and we oftentimes share the story. Our daughter, Claire sometimes asks why she wasn't named Martha. And when we had our twin girls, we didn't want to give one of them that name and not the other to follow the family tradition. So when we found out we were having another girl in 2015, we decided she would be the fifth Martha, but she's doing great.

[00:07:55] Just finished up kindergarten. I have to tell you it's a whole new experience when you start your school career in virtual. School. She is a part of that class. So I'm excited for her to be back in school.

[00:08:05] Michael: I can't imagine having gone through that first part of socialization virtually, I

[00:08:09] Martha: know, I know it's been a whole new experience, but we've made it through and we've all learned so much during the pandemic and we've learned how to adapt and pivot.

[00:08:17] And we've done that quite a bit with today is a good day and what we've been trying to do to help NICU families, but, uh, all new experiences for all of us.

[00:08:25] Michael: So many new experiences, and now I'm having the new experience of starting to like go back into the

[00:08:31] Martha: world. I know, I know it feels great.

[00:08:34] Michael: It feels very good.

[00:08:36] Yes. Speaking of feeling great, you, in your story, you share it with such positivity, but it is a story that also contains so much loss. And I, I just have to ask, like, clearly you tell this story frequently as it relates to what you're doing every single day. Does that get emotionally exhausting sharing your story like that?

[00:08:57] Martha: That's a great question. I, I will say I have some moments where I just sit sometimes when my Facebook memories pop up from 10 years ago, it takes me back for sure. And I think when you talk to any family who has experienced the NICU or traumatic birth, uh, it never leaves you, those memories they stick with you.

[00:09:15] You can remember almost every moment, very vividly Paul and Me. When we look at our. Story. We go back to the day that I was admitted to bedrest. It was Tuesday, November 9th, 2010. A neonatologist had come in to meet with us with our consultation, and we'll never forget what he talked to us about, but he basically said.

[00:09:36] every day, every hour, every minute counts here. And there is a very slim chance of survival for your daughters. This was 10 years ago and 23 weekers did not have even the chance they have today truly. But we knew that if we were able to leave the NICU with either of our children, that. That was really a, a great moment for our family.

[00:10:04] Michael: Paul, and, you were in the NICU with your family for a hundred plus days,

[00:10:08] Martha: 103 days.

[00:10:10] Michael: So, how do you explain, or what's the story of what in the world almost four months is like in the NICU,

[00:10:17] Martha: it looks different for every family. For us, we were blessed to have family who was nearby. My mother lived with us for an extended period of time.

[00:10:26] My poor dad out in Lancaster. I'm not sure what he was eating for dinner, but probably a lot of Ritz crackers and, and, and other things, but , but my mother stayed with us. So we were. To have her, not all families have that blessing to have a, a parent or a family member who might be able to stay. We also.

[00:10:44] Paul went back to work. I ended up going back to work, which is a conversation that I have with different parents, moms who will come and say, how did you do that? How did you leave the NICU and go back to work? At the time I was at the Franklin Institute, we made it work. We got up at four 30 in the morning.

[00:11:00] We went to the NICU by 5:00 AM. We. Stayed until the nurse shift changed. And then we would come back after work. We again were blessed to have some family when Claire was strong enough and in an open air crib closer toward the end of her NICU stay my mother-in-law and our aunt would come in and hold her during the day when I was at work and spend time with her.

[00:11:18] So I think tapping into the friend and family network, as much as you can to help support you and to say, yes, I need help. Yes. That would be great. A lot of times families or friends will say, will you just tell me what you. And I'll do that for you when it almost can be reversed to say, Hey, I'm gonna bring you a dinner tonight, or I'm coming over to take your older kids who are at home so that you can go to the NICU and not worry about it and just saying great.

[00:11:45] Okay. Thank you for that help. And I think the conversation that we had with the neonatologist who's a dear friend of ours was so real and honest that even after Mary had passed away, Paul and I. Always look at all of our experiences in life and try to be grateful for all things. And so we were very grateful to leave the NICU with Claire because we truly didn't know if she was coming home with us.

[00:12:10] The rug for her nursery stayed rolled up in her nursery until about two weeks before she came home with us, because we weren't sure she was coming home. So we try to be grateful for all.

[00:12:21] Michael: Well, that gratitude is clearly reflected in the way that you share about that journey and clearly in the work that you're doing.

[00:12:28] Can, can you tell me a bit about the, the story that's behind the name of today is a good day, cuz. Yeah. I'm really curious to where

[00:12:36] Martha: that came from. Yes, absolutely. When we were in the NICU, my pregnancy journal had become our NICU journal and we wrote everything down from the doctors and nurses, every daily report when, when they started walking over to Claire and Mary's is isolete.

[00:12:53] We got the pen out and the journal ready to go. But at the beginning there were a lot of difficult moments, challenging moments, bad days. Where our daughters were very sick. Claire, especially she was born at a pound two. She had dropped to 15 ounces. She had significant health issues. Mary was kind of holding her own.

[00:13:14] She was our stronger twin at birth, and we would write down all of the reports, all of the experiences we were having in the NICU, but we always rejoiced. Even in those early days when the doctors and nurses would say, well, today is a good day for Claire, or today is a good day for Mary. And when those good days outweighed the bad days later on in our extended Nick, you say that's when Claire was able to come home with us.

[00:13:42] So that is where the name came

[00:13:43] Michael: from. Is story something that's always been important to you as a, as a person, as an adult, like knowing that you are already keeping a pregnancy journal, like clearly you think about. Tracking beats and moments in your own life. So I'm just kind of curious where that, where did that start or get reinforced

[00:14:01] Martha: for you, Michael?

[00:14:02] That is a great question. I think storytelling has always been an important part of my life and I know it's an important part of my husband's life. He loves to tell stories. And when we look at our experience through the NICU and what we're doing with today is a good day. Storytelling is a big part of it.

[00:14:19] Our entire network of NICU families that we work with, that we stay connected with, who volunteer with us, who go back to hospitals and take their NICU miracles back with them. They're all sharing their stories. They're sharing their journeys of. What it was like to deliver a baby prematurely or deliver a baby at full term and not expecting to go to the NICU and what their experience was like as they navigated those isolating difficult lonely days in the neonatal intensive care unit.

[00:14:50] So I would say most of what we do as an organization is storytelling because we are trying to foster a connection. Among parents to help them know that they are not alone. One of my most favorite pages we have on our website is a page dedicated to NICU miracles those NICU miracles. The stories are told by the parents.

[00:15:10] They share as much or as little information as they want to share, but the children are shown in their gestational age. So there's Claire at 23 weeks, 24, 25, all the way up to 37 plus. And all of the families have shared their own personal stories of what their NICU journey was.

[00:15:27] Michael: I saw that page and it is really intense.

[00:15:31] I really appreciate the way that you are using those stories to support other families.

[00:15:37] Martha: I think it's to help them feel as though they're not alone because that is how we felt in the NICU. And it, it was truly my. My favorite story to share was meeting that three year old little boy who we're still friends with to this day is now a teenager.

[00:15:51] I think he's probably close to 15, but he was three years old sitting across the table from us. Here is a 23 weeker playing on his mother's iPhone. She had come in to bring a pizza lunch in. That moment that we spent with Sam gave us so much hope and inspiration. Even after our daughter, Mary had passed away.

[00:16:11] We, one week later it was his story that helped

[00:16:14] Michael: us. So I have to ask, and this is maybe a little bit hard, but in your story in particular, and I know there's the second chapter of your story also with your son. Yes. But focusing on the, your initial story with your daughters, you had both a miracle and a loss.

[00:16:32] How do you support a family who's in the NICU, whose story doesn't end in a.

[00:16:38] Martha: We have experienced both and we've experienced the loss of our son. I think helping people to know they're not alone that others have gone through that journey. We just developed a full child loss resources page on our website to help families who are experiencing loss and figuring out where to get the help that they need. But it's being there. It's being someone who understands and being there for someone else to reach out to if they want to, if they're in a spot where they wanna share their story and talk with others, but there are a lot of us. And I think as you go through life and especially in.

[00:17:14] Experiencing the NICU, but also experiencing a lot. People come through your life and cross your path that you never knew you would meet, who have similar stories, who maybe don't talk about it as much. Right. But when they hear someone else's story, they say, oh, I've experienced the same thing. And it's really powerful to make those connections with others.

[00:17:33] But I think providing the resources, partnering with the hospitals, figuring out the best way that we can help families who experience loss and helping families to stay connected with one.

[00:17:43] Michael: I'm interested about the journey that you and your husband took from. Nick you experienced to deciding to start today is a good day.

[00:17:54] Martha: We waited a few years before we officially founded today is a good day. And I think after our experience, we always knew that we would wanna give back in some way. We just didn't know what that really looked like. We did. Start taking Claire back to the NICU when she was about 18 months old, here is this 23 weeker surviving identical twin 15 ounce miracle with significant brain bleeds.

[00:18:17] We didn't know what her future would look like, whether she would walk or talk or what she would be able to do here. She is walking, hitting milestones. Doing really well. We started taking her back. So just as we met Sam, other families could meet Claire and have some of that hope that we got out of that experience of meeting Sam.

[00:18:38] That evolved into conversations with Abington hospital, which is where we were to figure out the best way that we could help families. And that started with care packages that had a journal in them and a water bottle. And those care packages have evolved over the years that now they include a book so that parents remember to take a book in, to read to their children.

[00:18:57] I still remember my husband. Through the small hole in the isolette reading book, after book, after book to our girls, but also hand sanitizer, lip, balm tissues, just things that parents could use and stories from NICU graduates and other families to help them know that they are not alone. We officially founded today is a good day.

[00:19:17] it was, I believe right around the beginning of 2013, my best friend from Penn state called me and said, get on Facebook Campbell. And I have set up a fundraiser page for you. I'm tired of hearing you talk about starting this organization. Let's get this thing going. That's awesome. Yes, that's a good friend.

[00:19:37] Yes, it is. We raised the money we needed for our 501c status. We ended up applying that next year and we were officially founded in 2014. You know, knowing

[00:19:46] Michael: that you are a nonprofit professional, I could see how easy it would be to delay that 5 0 1 C three process. Yes. Cause I, it is, it is no small journey if I'm yes.

[00:19:56] From everything I've been

[00:19:57] Martha: told. So yes, but since that time it's been great and we have wonderful volunteers and dedicated supporters of our mission who just continue to give day after. Our hospital partnerships have grown over the years. We started with one hospital. We're now working with 10 hospitals, mainly in the greater Philadelphia area.

[00:20:14] Did, did I see that

[00:20:15] Michael: there's one completely out of the region

[00:20:17] Martha: also? Yes. Yes. We work with children's Wisconsin and that is through a really unique partnership that we have with United healthcare of Wisconsin, where they provide the care packages for. At children's Wisconsin, but we mainly work in the greater Philadelphia area into New Jersey and Delaware.

[00:20:35] In addition to the personal programming that we have, we also have a direct financial support program where we will help with some gap funding for car seats, pack in place, utility bills, rent, anything a family might need that helps them during the difficult time in the NICU. When you need gas, going back and forth, parking food, groceries.

[00:20:56] Michael: so I was thinking about this and I can't even imagine what during the pandemic family journeys have been like with infants in the

[00:21:05] Martha: NICU. That is a great question because I can't understand what family journeys have been like with the pandemic, knowing what it felt like without. A pandemic and all that was going on.

[00:21:19] That is an entirely new layer. Also not being able to go into the hospitals during this time to provide programming, which is a little harder to connect with families. You don't smell pizza down the hallway of a dinner that we're bringing in and being able to be there face to face, or bring the NICU miracle in like Claire.

[00:21:39] To meet with families face to face, but we have tried to provide funding to provide programs, to provide opportunities for families to connect over the past months.

[00:21:50] Michael: And I know we're thankfully on the back end of this experience, but I gotta know cuz I've, I've filmed some in NICU and I know what an intense experience it is.

[00:21:59] And. Were families always able to go in and be with their

[00:22:05] Martha: babies. It depended on the hospital's regulations. Every hospital had different requirements and restrictions. Some had one parent could go in some, there were certain hours that you could go in, but it was truly all different.

[00:22:19] Michael: I can't even fathom cuz I also know how important just that contact between parent and, and babies is just to, just for thriving

[00:22:28] Martha: and during COVID we provided.

[00:22:30] Funding to the hospitals. When, when we talked with them soon after everything was shut down, we said, what do you need? And all the hospitals came back with different answers because we thought, oh great. We can order. 3000 of something and split it up among the hospitals or 5,000 of something. But those conversations that we had, Michael, every hospital needed something different for their families and for their healthcare workers that we were trying to support, because in addition to the families, there were the healthcare workers that were frontline in the NICU, trying to keep the babies as safe as possible.

[00:22:59] The families safe. And so we ended up giving grants out to the hospital so they could purchase items that they needed for their families that they serve. Some of the hospitals purchased voice recorders. They could record the parents' voice recorders. So that those voices could play next to the babies on a regular basis.

[00:23:21] Some of our hospitals purchased iPads, so they could do virtual rounds and still be connected with the families directly without just being on the phone. So the hospitals were also thinking creatively of how to interact with the families during that time and to help the babies.

[00:23:36] Michael: So taking all these new and interesting ideas and ways to deliver your services to families and your partner hospitals.

[00:23:43] What, what is next for today is a good day that,

[00:23:46] Martha: that, again, you're asking all these great questions, Michael. Well, what is next for us? We are continuing to think outside the box we launched the today is a good day podcast. That was our way of connecting with families. Virtually right. Mm-hmm and providing a program that they could listen to.

[00:24:02] You never know the connection that someone is going to make when they hear a family. Talk about having a baby who maybe has a, a trach or had surgery right after they were born for digestive issues that they had. And another family listening says, oh my goodness, I'm going through the same thing. I really need to connect with that family.

[00:24:22] As the podcast is growing, we are bringing in more experts to talk about self care. We have 10 mindfulness, stress reduction, breathing exercises available that you can easily download when you're sitting in the NICU or for anyone. Right. Uh, but we're, we're trying to use the podcast as a way to connect with families, share stories, share recommendations, best practices, things that people have learned.

[00:24:48] Nurses have learned over the years from working with NICU. I know some people

[00:24:52] Michael: with a podcast. I know they take a while to build, and I'm really, I'm interested about new audiences finding you that are since there's obviously many NICU that are not, today is a good day. Hospitals. What has that experience been like as new families are finding out about today is a good day through the

[00:25:11] Martha: podcast.

[00:25:12] It's been great. I mean, when they reach out, if they've heard a podcast or even people who may not be directly connected to it, but they have a friend who may have navigated the NICU. Or a family member who has navigated the NICU and they hear the podcast and can share it with someone else or say, Hey, I heard it.

[00:25:30] And I wanna get involved in your organization. I'd love to give back in some way.

[00:25:34] Michael: Well, I'm glad that we're able to help promote that podcast. Um, thank you. Along with you in addition to donating, how else can people support the work of today as a

[00:25:45] Martha: good day? Thank you for asking that there are so many ways to get involved.

[00:25:49] Of course donations are wonderful, but we have great opportunities for becoming a volunteer. We have great. Volunteer subcommittees, even activities to do at home with your families or friends. We have bonding squares that are included in our care packages. What's a bonding square bonding squares were brought to us by a family who welcomed their first NICU miracle.

[00:26:11] In 2014, they are woven, crochet and square is made out of fabric. Two are included in each of our care packages. One is placed on the parent's skin. One goes into the, is isolate at night. When the parents go home, they switch the bonding square so that the parents have the baby sent and the babies have the parents sent.

[00:26:31] We can never have enough. Of these bonding squares, but we have great opportunities to make that at home. And then we also offer team building activities. So as people are going back into the office, they're getting back together. We can host team building activities to build our care packages, bonding squares, and make signs for NICU families.

[00:26:51] That's another one of our fun project. I have to

[00:26:54] Michael: say it would really cool to think that all of our friends who were so busy making masks, you know, if they really don't want to give up that sewing boat, they can switch to bonding squares. That would be very cool.

[00:27:03] Martha: Absolutely you can visit today is a good day.org and there are opportunities to get involved.

[00:27:08] You can send us an email. We never have enough of those bonding squares. So we, we always need them, but also just get in touch. If you have a family member or friend going through the NICU, now we're happy to send a care package on your behalf to them. And. You know, get in touch with us, lots of ways to give

[00:27:24] Michael: back.

[00:27:25] So I'm thinking if you can get people to do a sewing circle for bonding squares, you can have a bonding square circle.

[00:27:32] Martha: yes. Nice Michael. Nice. I

[00:27:35] Michael: couldn't resist. I always like this square circle, I guess. Um, we've talked about a lot of things that you're doing. I just wanna check. Are there events that you have coming up that you want people to know

[00:27:44] Martha: about?

[00:27:44] All of the information for our upcoming events is available on our website at today is a good day dot.

[00:27:51] Michael: Today is a good day. Just, just like it sounds.org. Got it. Org. All right. Well, listen, Martha, I'm so appreciative of your sharing your story with us at the story slam. I sincerely hope you'll join us in person when we bring mission story slam back into the real

[00:28:06] Martha: world.

[00:28:06] Absolutely. I can't wait. That was such a great experience and I was really honored to be a part of it. You well, thank you

[00:28:12] Michael: for trusting us. Share that story and to help get it out into the world. So I do wanna share some current event news I received from Martha today is a good day, has two major upcoming events on October 17th.

[00:28:25] They have their Ralph Shrager Memorial fun golf outing. And on November 13th, they're hosting their today is a good day. Family brunch, more details are available at today is a good day.org org that's today's episode. I want to thank you. Our listen. It's really, really great to be back with the podcast.

[00:28:44] And we will keep showing up in your feed with more interviews with storytellers, from mission story slam, you are the reason we created mission story slam. And this podcast, we are so inspired by our community of do-gooders and missionaries. And we love hearing from you. Let us know how we can make this podcast better.

[00:29:03] We'd love to hear about how storytelling keeps you engaged with your mission and work or send us ideas for themes for future slams or podcast guests. Reach out to us through our website mission story, slam.org, or connect with us on Facebook, Instagram, and Twitter. And please start prepping your winning stories now for mission story, slam seven.

[00:29:22] With the theme of thrive, we get your tickets to join us at yards brewing on Wednesday, September 21st from the link on mission story, slam.org. In the meantime, please share this podcast with friends and colleagues, you think would enjoy what we're doing at mission story slam the mission story slam podcast is produced by Dave Winston and brought to you by PWP video, we are video with a mission.

[00:29:45] Find us@pwpvideo.com. We'll be back soon with another episode until. I'm Michael Schweisheimer. And I look forward to sharing the next story behind the story with you soon.