← A Place of Yes | A Grief Podcast 
A Place of Yes | A Grief Podcast
How Our Non-Profit is Impacting Medically Fragile Individuals
00:12:55
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- [00:02]
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Welcome to A Place of Yes, a podcast about how I moved through my darkest hour. And for me, that was in channeling my grief into good. Welcome to the show.
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Hi, I'm Heather, host of A Place of Yes. And in this week's mini episode, we are taking the advice of a listener who set a message. This was actually Mandy. She's actually on the Jakes From Heaven board of directors. And she said, what about an episode reading and discussing some of the children and how Jakes has supported them? An hour of reading thank you notes would be lovely. Don't worry, I'm not going to read them for an hour. But I did think the idea was sweet. I would love to showcase just some of the Jakes Help From Heaven side of A Place of Yes. As many of you know, it started as sort of an offshoot of what we do at Jakes and a way to share the stories. Not only my story, but the amazing stories of the families and individuals we work with. I just grabbed, honestly, a random pile just that we've gotten really, in the last four to six weeks. And similar to feedback from the podcast, getting feedback for what we do with Jake's Hell From Heaven, it just, it goes so far for me because it just reminds me you can do small things that make a huge impact, and that is, I think, a lot of what we're trying to do. So the first thing I want to share with you is actually, we just got this in the mail. I want to say, a week or two ago, this was a common misconception about Jake's Help From Heaven is that we only help children. And the fact is we help anybody that has, you know, physical disabilities, complex medical issues, and we help them throughout their life. So it's not like just until you're 18 and this individual has cerebral palsy and other medical challenges. And one of the things that they requested from us was this sort of stair system because as a family, they go camping and she cannot get in and out of the camper or really do anything independently. Sometimes it's really important, I think, to put ourselves in other people's shoes and think about how frustrating it must be to be 30 years old and have to rely on your parents or others to help you for every single thing, every time you want to move. And this simple stairs really made such an impact. And what was great about these thank you notes is we got the thank you from the parents and also from Kimberly. So I'll read Kimberly's first. Heather and Jake's Help From Heaven. I really enjoy going camping with my family and my friends of my family. Now that I have these great and wonderful stairs, I am now independent with these stairs where before I would have to wait for help. I really love my new camper stairs. Thank you very much. And then from her parents, Heather and Jake's Help from Heaven, thank you so much for providing funding for an accessible staircase for our daughter Kim, who has cerebral palsy with limited lower extremity movement. These stairs are identical to the ones at our home, which Kim navigates with ease. We can't thank you enough for making a camping trip an independent and fun experience for Kim. She no longer needs 100% help to get in and out of our travel trailer. Thank you again for all your help. It means a lot to us. And again, that to me, that's basically what we want to do, right? We want to, like, create opportunities for people to be as independent as possible and to be able to find joy. And I love that because it was a relatively inexpensive item and we made a huge difference not only for Kimberly, but for her parents as well. This one we just got on Monday, and this little boy we bought a Rifton bike for, you know, and I delivered it and he wrote it around and then they created the Shutterfly card with all these pictures. It's just kind of great. I think it's kind of funny. They've got the Jake Cheap in the corner. It's a very long note, but I will read part of it. Jake's Help From Heaven is a wonderful organization. We love that Jake's name lives on in the most beautiful way. His short life had so much purpose and because of him, so many lives are being transformed. Thank you all for making a difference in this world and sprinkling love, kindness and hope wherever you go. Thank you also for bringing smiles, laughter and comfort and so much more to the most deserving families. We are forever grateful for Jake's help from heaven. Read the other part too, because it's cute. This note is long overdue, but we wanted to make it extra special with pictures of Luke and his new tricycle. Thank you so much for purchasing, assembling, and then delivering this bike to our home. It's the most amazing tricycle that will improve our son's lower extremity, strength, endurance, and coordination. Luke loves being outside with us, so we are excited that he can now participate in outdoor family recreation time for many years to come. This gift from you all will provide him with increased mobility and a sense of freedom, which is so important. His smile in these pics says it all with love and gratitude. Luke's parents. So that's a sweet one, too. So one of the things that we do at Jake's Hell from Heaven, too, is if we've helped you through your life. We also do one last sort of bereavement support when we lose our kids. And it's been a rough summer. We lost four members of our Jake's family this summer. And honestly, not even in the summer. I feel like it was in like a six week period. It was pretty quick. So we send a final monetary donation to support the family during the time of, you know, the funeral and all of the expenses that come with that. And in many cases, these losses are unexpected. And it's always an interesting thought because I remember when Jake died, there's so many people who assumed that we were ready for it. And it doesn't matter if your kid's sick or not, you're. You're not ready for it. So one of the of the four that we lost was Sophia Leclair. And her dad sent this beautiful picture of her and said, you know, we can't begin to thank Jake's help from heaven enough. Anything our Sophia needed, you guys were there. We are so blessed and forever grateful to Jake's help from heaven. And it's just, you know, a two liner, but it's, it says it all. And that smile says it all. Like, that's why we do what we do. Another little boy that we lost, Tavian, he actually was a little boy. I think he was. He might have made it to 20. So the his mom sent a note and said, thank you so much for your generous donation and support during the loss of my sweet Tavian. Your kindness and thoughtful support of Tavian means so much to me. May we be able to pay it forward one day in Tavion's memory. You know, that's awesome. That's all you can do, right, is use what you've learned through your journey and try and help somebody else with it. So this note also came this week. And what I loved about this, I mean, I love all the notes and I love when the parents write the notes, and in many cases, they have to write the notes, but every once in a while, the person we help writes the note. I just love that, too. So this said, dear Heather, thank you for you and your organization, for the money, for my hand controls. Having hand controls allows me and countless others a new opportunity for independence and growth in life. And what he's talking about is, we got Hand control. So he has cerebral palsy but is pretty functioning and can drive, but needs hands controls. So it is a really expensive, adaptive. I don't even know what the word is, but like a way to adapt the car so that he can safely drive. And I love that, like anything that we can do to get you one step closer to living your most independent life. And it reminds me in the Chris Lyons episode where we're talking about what independence is, right? So many of us think of independence in one definition. But my independence and Jake's independence looked very different. But we were always trying to make him as independent as possible and that just can look different. And for a lot of our families, that's all they're trying to do is get their child or their grown adult who they're still helping, helping them get as independent as possible. And I think it's just a really beautiful goal. Omg. Thank you so much. We are currently back at the Children's Hospital of Philadelphia and have been here for a couple of weeks now. Ava has come down for a complex dithering of the spinal cord and it did not go as planned, but she's making improvements every day. It is a huge relief knowing when we get home, we will have some bill money to catch up on. I can't thank Jake's help from heaven enough for all the support throughout Ava's life. Ava has gotten to enjoy a better quality of life. And what she's talking about is when our families have to spend time at hospitals that are far away. You know, so this family, all their doctors are in Philadelphia. Lots go down to the city, lots go to Boston. It's expensive. So we have a medical travel reimbursement where we give a stipend for hotels, we give a stipend for food, we pay for gas back and forth or whatever mode of transportation they took just so that the focus can be on making the difference and being relaxed and not worrying about how much money they're spending and that they're losing wages and that everything's just going to be so much harder and trying to rush the process when sometimes these processes take longer. So that's what Ava's mom was talking about. This is kind of. This might be a nice one to end on. Thank you, Heather. But I've said it before, and it's true. Jake's help from Heaven is a godsend. What you and your family do for our special needs community is so needed and appreciated. We continue to fight the system that is supposed to help. But in the end, it is private organizations like yours that do the most. We used to be eligible to go out of state and be in revenue and be reimbursed, but we no longer are. A few years back, I finally said, enough is enough. Brooke had three medical trips that I submitted for reimbursement. It took nearly a year to be reimbursed because every single time I submit, they played the same games. First, they always claimed to have lost or never received my form and receipts, but I always sent them certified. Then I waited and waited and had to follow up umpteen times, including involving supervisors. Then they claimed they couldn't read the receipts. This is on top of all the hoops they would make me and our doctor's office jump through to get the trip approved to begin with. Additionally, there were ridiculous denials such as not parking at the hospital, but rather the hotel down the street. You know, all of this added stress is the last thing a parent's need when dealing with a medically complex six child. Thank you for making it easy. So I end on that note, because I think that is why one of the main reasons why we started Jake's Help from Heaven. The system's broken. It is not easy for families to get the support they need and to get the support that they deserve. I love that we exist. And it's always hard for me because this year we also, you know, we. We want to make sure we're sustainable and that we are around for as long as we can be around. So we had to tighten some of our parameters. And it's hard when you hear stories like this because part of me wishes we could be growing our parameters and helping more because there's so many people who need help. But we also need to figure out how we don't burn out and how we don't run out of money and how we. We can stay around. But this is at the heart of what we do. We know this life. We know how hard it is to get the support we need. And the last thing we want to do is make people jump through the hoops that this mom described in that paragraph. We don't want to play those games. We want to make it really easy. I think we do a pretty good job of that. So for all of you, if you don't know about our organization, Jake's Help From Heaven, please go to the website jakeshelfromheaven.org it talks a lot about what we do. Listen to the podcast A Place of yes, we talk not every week, but a lot of times with families or I reference the work we do. Or we even have some episodes where we talk to board members about why we do what we do. And if you're interested in supporting, we would love your help on the website. You can donate to JakeCell from heaven. You can donate towards medical, travel or bereavement or any of the things that maybe you heard about. Or you can donate to A Place of yes to help us keep telling the stories we're telling. Thank you so much. If you'd love to reach out to me and let me know anything, you can find me on Instagram. Eatherashstratter is my personal account. Akeshelp is the Jake's Help From Heaven and at A Place of yes podcast is the podcast Instagram. Thank you for listening.
- [11:40]
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Thank you for listening to A Place of Yes. Please follow us wherever you listen to your podcasts. If you really like this episode, please share it with a friend. Anybody who might benefit from listening to this. It would make a world of difference if we could just reach more people and share the work that we do.
- [11:55]
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And the stories we want to tell.
- [11:57]
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