Podcasts about zellweger syndrome

What can you say to those who grieve? What can you do for those who have lost a loved one? How can you do all that without coming off as an insensitive oaf? If only they would tell us how to comfort them.Hi, my name is Terence, and I'm your host for Reading and Readers, a podcast where I review books for you. Today, I review “What Grieving People Wish You Knew About What Really Helps (and What Really Doesn't)” by Nancy Guthrie. One hundred ninety-two pages, published by Crossway in September 2016. Available in Amazon Kindle for USD 9.97 and in Logos for USD 12.98.## Grieving Mother and FriendsNancy Guthrie has published ten books on Bible studies, six on Grief and Suffering, nine devotionals and many more. In today's book, she writes as a mother who has grieved for two children, Hope and Gabriel. Both were born with a rare genetic disorder, Zellweger Syndrome, and only lived for six months.She is acquainted with grief and with others who grieve. She introduces us to the GriefShare ministry, I quote:> When your friend attends a GriefShare group, he or she will be surrounded by others who are working their way through grief too — people who understand the tears and fears, the angst and anger, the questions and frustrations of grief. It can be such an unexpected and welcome relief just to be surrounded by people who get it.GriefShare facilitators and members are prominently featured in the book. You can almost consider them co-authors or Guthrie, a curator.This comes across as a writing project from the community of the grieving who want everybody outside this circle to know how to walk alongside them. They have been helped. They have been hurt. And this is their collected wisdom.  So, let me start by telling you two ways I got grief wrong.## Call Me If You Need AnythingFirst, I thought it was good of me to say, “Just call me if you need anything.”Then I read this:> I will never forget the line of people at the cemetery. They passed by hugging my mother and all seven of my siblings as we put Daddy in the ground. All the words blur together, except that they would be there for us. I remember wondering what they meant. The following spring, after Daddy was buried, one neighbor drove up our mile drive and asked what he could do. Any fences need fixing? Any chores the boys need help with? He just came. Every time he came I remember thinking about that line of people at the graveside. They were loving people who meant well. This man did well. He just came. I don't remember if he ever actually had to do anything. But he came and offered his strength to help.  I reflected on this, and I realised that while I was sincere in my offer to help -- if I got the call, I would have dropped everything to help -- I also realised that when I gave that offer, I thought I had already done my part, my job. Now, it was up to them to take up my offer. By giving up the initiative, I was off the hook. By passing the initiative to them, I was passing on the burden to them of asking for help.## Click to Like My GriefAnother thing I got wrong is about grief on social media. I was surprised to find a whole chapter on this.When I see someone share their grief online, I don't usually comment or like the post. If it's a person I know well enough, I would write a personal message.My reason is:1. If I am not close to the person, I think it's hypocritical to show up to make a quick comment or click on a sad emoji.2. I see social media as a frivolous medium. People are flippant and shallow on social media, but grief deserves a more solemn medium.3. When I make a public comment or post on social media, I realise that I write not just to my friends but also to everybody else. So, this sense of performing for onlookers seems wrong when dealing with a tremendous personal loss.4. I am a private man and not the type to express my grief publicly. So, when I refrain from responding to social media posts, I am applying the golden rule: I am treating others as I would like to be treated.After reading this chapter, I realised it's not about me; it's about the one who has suffered loss. Love is also treating others how they would like to be treated.They have already made their grief public. That gives permission to everyone to respond publicly; that is an invitation to acknowledge their grief with a click or a comment. She writes:> to neglect or refuse to comment on a post by a friend who has poured out his or her sadness on Facebook is to see their great sorrow and look the other way.And if I excuse myself because I'm not their close friend, that's convenient because I don't have any close friends, I'm joking, I do have friends, close enough I think. Anyways, I was surprised to repeatedly read how close friends were disappointments and strangers became treasures. We don't need to be close to care, just as the Samaritan man didn't have a checklist before he decided to help people.## Everything is WrongI learnt many things from this book, and I only shared two. Some may be wondering whether I am too hard on myself. After all, some people don't like others coming over to mow the lawn; they want to do it by themselves, or perhaps they want to be left alone.Guthrie shared how gutted she was when her friend, who meant well, came to wash up her departed child's clothes. Guthrie wished she didn't because she missed her baby and her baby's scent.At one point in the book, Guthrie describes the conflict within her:> I remember in those early months that I headed to church each week with two significant fears. I was afraid that everyone would ask me about Hope. And I was afraid no one would speak to me about Hope.When I read this, I thought if she doesn't know how to feel and how to respond, then there is a good chance that whatever I do is just wrong. How can I possibly get the words right, the timing and the tone right when the grieving does not know what is right? Only everything is wrong?When I say I got it wrong, I don't mean I sinned. I just mean I didn't think much about how I could do things differently. And in hindsight, I just didn't care enough to think how I could be more helpful.Sure, I would get things wrong, but that shouldn't stop me from being a better person when helping the grieving.After reading this book, if you love to talk, you learn that the grieving can appreciate you talking less. And if you are the one who never says anything because you are scared of saying something wrong, you need to learn to open your mouth because they need to hear that you care.How do we know when to speak and when to be quiet? When to mow the lawn and when not to? That is wisdom. And Guthrie suggests we get our cue from the mourner. Let the griever set the tone and direction. That and a dose of wisdom from above.## God's WillI have shared with you two things I got wrong. Let me now share two things I got right, but most people get wrong.First is the matter of the Will of God. Is it ever appropriate to say to a widow next to the coffin, "It is God's Will"?As someone who loves the doctrine of the Sovereignty of God, if I say, “Yes, because it is true”, then it is a torturous act inflicted on someone already in unbearable pain. If I say, “No, because it is cruel, " it feels like my convictions are only valid when convenient, so maybe I don't believe them to be true after all.Guthrie offers wisdom here:> I have come to think the term is our inadequate human language trying to make divine mystery manageable and tolerable. The words themselves are simply inadequate to carry the weight of the reality—especially when used in a simplistic way.Later on, she writes:> Was it God's will for two of my children to be born with Zellweger syndrome and live very short lives? I don't think this question can be answered on these terms, nor does it need to be. We think we had two children who died because of the corrupting impact of sin on this world—the brokenness of this world has infiltrated even our genetic code so that we have defective genes. We don't think God picked us out to have two children who would die. But we would also say that nothing happens to us that is somehow outside of his control. God has ordained a world in which he accomplishes his will through secondary causes such as the laws of nature and human choice. As I've heard my friend Joni Eareckson Tada say, “Sometimes God allows what he hates to accomplish what he loves.”We know God remains in control. We just don't need to insert this profound truth at inappropriate moments.It's the same when we attend a non-Christian's funeral. We don't tell the grieving widow, "Your husband is in Hell."Nor do we, in our attempt to comfort, tell her, "Your husband is in a better place."## HeavenGuthrie tells us that Heaven cannot be assumed:> ... while our culture assumes that most people—or at least all “good” people who die—go to heaven, that is not at all what the Bible teaches. The Bible makes clear that there is not one person who is good enough to enter into the holy presence of God (Rom. 3:9–20).In this chapter, she presents the gospel. She quotes Ephesians 2:4, 8-9 and writes:> A person who has been made alive together with Christ may die physically but will never die spiritually. The person who was dead and was made alive together with Christ is as likely to die as Christ is likely to die. And Christ will never die.And she continues:> But of course we know that there are those who do not see their need to be made alive with Christ. And when those people die, the sorrow for those left behind is multiplied. We should not always assume that the grieving people we talk to are confident their loved one is in heaven enjoying the presence of God. Imagine yourself in that situation (or maybe you are actually in it). Imagine that you never saw any sign that the deceased had a desire to be joined to Christ by faith or perhaps that person flatly rejected or ridiculed the need for Christ. If someone were to bring up heaven and want to assure you that your loved one is there, it would create anxiety, not peace. It would add to your agony instead of giving you assurance.If we can't say of the non-Christian, “At least he is in a better place”, then what can we say?In this chapter, which I cannot reproduce here, Guthrie helps us navigate by showing grace and love, yet never compromising or distorting the truth.I especially appreciate this chapter because it shows us the Christian difference. When a Christian dies, when we look back and see the spiritual fruit in her life, we can confidently say that she is in Heaven.But when a non-Christian dies, we can only say, "Sorry for your loss." No mention of Heaven or Hell. No offence and also no comfort."Death where is your sting?" is a victory cry reserved for the Christian.## Too Much Of a Good ThingIf I am forced to give one criticism it's it gives too much of a good thing.Imagine you attend a talk by Nancy Guthrie. She speaks for 15 minutes, then invites one of her team members to share a few words on the topic from her personal experience. You listen, and it just hammers everything home for you. The personal sharing just makes it more real, more vivid.Then Guthrie invites the second person to share. Again, wow. Then the third, then the fourth. You start to wonder when we will move on to the next topic.In the FAQ chapter, there is this question, "There's a Bible verse I want to share. Should I?" Guthrie answers by sharing the example where her friend, without any warning, lost her husband. Guthrie writes:> So I got on the private Facebook group for couples who have attended our retreat and asked them to respond with nothing other than a verse of Scripture which Starr could take hold of, and choose to believe in those difficult hours.She then lists the responses to the request—all 31 of them.  Am I heartless to say that she could have picked ten examples that best made her point? Maybe there is a reason she wanted to show the complete picture. Maybe I am heartless and would only truly appreciate what she has done here someday in the future.Overall, the book does an excellent job of balancing Guthrie's and the contributors', so I am really just nitpicking.## What If I Get It Wrong Again?Let me close this review with the biggest encouragement I got from the book.Throughout the book, Guthrie teaches us to be better friends to those in grief, answering questions from those who want to comfort. This is the only question posed from the other side's perspective.> I'm the one who is grieving. How do I respond to all the people who say and do so many things that seem to add to my hurt instead of soothe it?Guthrie answers:> The truth is that most people are hoping to be helpful, trying to let us know they can relate in some small way to what we're going through. If we put ourselves in their shoes, we realise it's tough to know what to say to someone who's grieving. So we can be prickly and sensitive about the things people say to us that we wish they hadn't, setting very high hurdles for people around us to jump through with their words. Or we can choose to see their brains searching for a connection, their hearts wanting to show us they care—even though they may not have the words to express it well. We can extend a hand to help people around us overcome the hurdle of awkwardness.That is just grace. If these people who have gone through so much pain can say, in essence, "Forgive them, for they do not know what they are doing," then I think we can do better.Ecclesiastes 7:2–3 (ESV)It is better to go to the house of mourning than to go to the house of feasting, for this is the end of all mankind, and the living will lay it to heart. Sorrow is better than laughter, for by sadness of face the heart is made glad.For a long time, I never understood what that meant. But after attending a few houses of mourning and reading books like today's, I can see how sorrow is better than laughter. May the wisdom of God be with us all as we comfort the grieving around us.## OutroThis is a Reading and Reader's review of “What Grieving People Wish You Knew About What Really Helps (and What Really Doesn't)” by Nancy Guthrie.I got this book for free. It was the Logos book of the month. I downloaded it, not knowing whether I would ever read it, and I'm sure glad I did. If you want more book reviews, subscribe to the podcast or visit my website, www.readingandreaders.com. Thank you and bye-bye.## Book List* “What Grieving People Wish You Knew About What Really Helps (and What Really Doesn't)” by Nancy Guthrie. [Amazon](https://www.amazon.com/Grieving-People-about-Really-Helps/dp/1433552353). [Logos](https://www.logos.com/product/227267/what-grieving-people-wish-you-knew-about-what-really-helps).

Nancy and her husband, David, have a thirty-year-old son, Matt, who works with his dad creating kids musicals for the church through Little Big Stuff Music. They also have a daughter, Hope, and a son, Gabriel, who were born with a rare genetic disorder called Zellweger Syndrome and each lived six months. In this episode, Andrea talks with Nancy about this experience.Nancy offered many of the lessons she learned from the loss of two of their children in her first book, Holding On to Hope: A Pathway of Suffering to the Heart of God which was published in 2002. She and her husband, David, host weekend Respite Retreats for couples who have faced the death of a child. She speaks regularly at conferences nationally and internationally, and is a regular contributor to The Gospel Coalition, including hosting the Help Me Teach the Bible podcast.Nancy and her husband, David,  make their home in Nashville, Tennessee where, according to Nancy, life is less about professional pursuits than about the ordinary aspects of being a wife, mother, friend, and follower of Jesus, with clothes to wash, e-mails to answer, and a friend to listen to.WebsiteInstagramI'm Praying for You book

As we close in on Show #100, this cornerstone achievement has us all feeling very positive about the next 100 yet to come! And at the same time, we have to address the unfortunate news of the passing of Miracle Maddie who was born with an extremely rare terminal genetic disease called Zellweger Syndrome . Maddie’s ballast of a mother, Meagan, was a guest on our very first podcast where she expressed her intentions of providing the best life for her daughter through Cannabis. With a life expectancy of only 1 year, Maddie lived to be 6 years old. The only medication administered at the end of her life was Cannabis. Cannabis allowed her to be 641 days seizure free, 350 days opiate free, and 1,141 days no benzodiazepines. In all, she had gone from 26 pharmaceutical medications at the beginning of her life to just Cannabis. Maddie was a warrior. Someone you never knew, but can learn valuable knowledge from to better appreciate your own journey. And in her honor, we have decided to post Show #1 as a tribute. FROM FIRST RUN OF SHOW This is the premier Leaf Life episode, so why not approach one of the most elementary, yet vital discussions around the world of medicine today? For thousands of years this amazing plant has been used for health and wellness for all ages and as recently as the 1900’s could be found in the majority of over the counter medicines—until that all changed with criminalization. In today’s world, however, parents have found it to be hugely beneficial for children with a range of conditions from cancer to seizure disorders to autism. Today Cannabis use can still trigger Child Protective Services in illegal states to seize children, while in legal states THC and CBD are helping keep children healthy and seizure free. In this episode, we explore full plant Cannabis medicine and who it can benefit while gaining the imperative perspective of a mother who credits her daughter’s survival to the plant.

MEET THE GUEST: Taylor Costello is a mom to two angels in heaven (one miscarriage and one infant loss) and one baby on the way. Her daughter Lily was born on February 25th, 2018. She and her husband learned shortly after she was born that Lily would pass away before she was six months old due to a rare genetic condition. After spending 33 days in the NICU they came home to a massive amount of chaos. After some struggle, they finally found the tools they needed to get organized. This led to Taylor realizing there were other parents like them who were struggling with managing all of their children's home nursing supplies. Thus the beginning of Lily's List. Lily passed away on July 19th 2018 and Lily's List was officially born on October 1st 2018. Despite having no background in the non-profit industry, Taylor had studied psychology, and she had a deep passion to help other families like her. Six months in, the non-profit is thriving and she couldn't be more proud to share Lily's light in a world that is often very dark.   In this episode, we cover: How Taylor and her husband Joey navigated understanding the impact of Zellweger’s syndrome on their daughter’s life What it looked and felt like to transition home with a medically fragile baby after spending over a month in the NICU How Taylor rediscovered purpose and passion through starting Lily’s List after her sweet baby girl passed   “Lily gave me a good life. She really solidified that I loved being a mom, so we’re really excited to have another child, but she also gave me a whole new meaning to life and it’s just amazing and I’m very thankful for that.”   Where To Connect with Taylor Online: Website To Request a Box To Donate Box Supplies Email Taylor Instagram Connect with Mia Francis-Poulin! Find out how you can work with Mia at www.racreative.co Catch up with Mia on Instagram. Join the Mama, Build Your Empire Group on Facebook. Taylor met her husband, Joey in high school and they began their marriage and her husband entered the marine core. They had no idea how a life of constant transition would actually prepare them for their adventure with raising children. Early on, Taylor and Joey suffered a miscarriage followed by months of infertility. Their decision to go public with infertility and IVF treatments was met with a lot of encouragement and solidarity from their community. Though the pregnancy was normal in nature, it was obvious as soon as Lily was born, that something was not right. Lily was born blind, she had low tone, and refused to eat, among other telling signs. With the help of an expert geneticist, they were able to quickly diagnose Lily with Zellwegers Syndrome, which meant that she only had months to live. After life in the NICU, they made the transition home to a small apartment where Lily’s parents became nurses around the clock with the support of a lot of in-home health care professionals. It was exhausting and overwhelming, but the nurses provided Taylor and Joey so much emotional and practical support to weather these five months with Lily. Losing a baby and so much purpose for each day was a lot more difficult than they ever imagined. Taylor had planned to throw herself back into work but was reminded that she had the chance to help other families who would face the same storm of caring for a child at home which led to the birth of Lily’s List. Perhaps the hardest news to hear after losing Lily was learning that Taylor and Joey’s combination of genes would most likely always result in the worst form of this disease. They opted to do IVF again in order to avoid this outcome and now are expecting another baby girl.

A conversation about death, loss, and what you can really say and do to help grieving people. --- “Hope was with us for 199 days and then she was gone.” Nancy Guthrie has had to live through what many dread as the worst of all experiences of death – the death of her child. And she had to go through it twice. “I had lots of questions. There were things I thought I understood about God that this brought to the surface – maybe I didn't understand as much as I thought I did.” As a Christian, Nancy turned to the Bible for answers. It wasn't easy, but she eventually found herself in a place where she could believe that “somehow, [this experience] is going to accomplish God's loving purposes for my life, and for my family”. Then she fell pregnant again, unexpectedly. “It felt like there were grey clouds gathering in the distant horizon that were getting ready to sweep through my life again,” she says. Her son was diagnosed with Zellweger Syndrome, the same rare genetic disorder that had taken the life of her daughter, Hope, prematurely. Gabriel lived for 183 days. “You have to make a decision about whether or not this grief is going to continue to define you, to be dominant, if you're going to keep giving it a lot of power in your life, or if you're going to be able to find a place for it in your life.” In this episode, Nancy shares more of her story of loss, grief, and hope – and how she's found a way to turn her pain into something helpful for others facing similar situations. She also gives great advice on how to really help grieving people. First, speak up: “When you speak to them about the person they love who died … you didn't make them sad, they're already sad.” And show up: “You remember who is willing to stop the busyness of their life to enter into that sorrow with you.” For Nancy, it's her faith that has shaped the way that she has been able to grieve well, and help others grieve well. “Faith informs loss, but it doesn't make loss hurt less by any means. So I would say what faith instilled in me [was] this sense that this loss wasn't random or meaningless, and it filled me with a confidence that this life is not all there is.” --- SUBSCRIBE to ‘Life & Faith' on Apple Podcasts: http://bit.ly/cpxpodcast FIND US on Facebook: www.facebook.com/publicchristianity FOLLOW US on Twitter: www.twitter.com/cpx_tweet 

Today on Hempresent Vivian McPeak is joined by Utah pain patient Enedina Stanger. Enedina Stanger stayed behind in the parking lot while her two young daughters were shopping with their father in South Weber, Utah. She suffers from the rare and potentially fatal genetic tissue disorder Ehlers-Danlos syndrome. She lit up a marijuana cigarette and rolled down the window of her van to let out the smoke when she was done. That’s when somebody passing by called the police, claiming Enedina was smoking in front of her daughters, who by then had returned to the parking lot with their father, Mike Stanger. Enedina was booked and released from the Weber County Jail and charged with third-degree felony child endangerment and misdemeanor possession of a controlled substance. The felony was later dropped and a judge ordered probation instead of jail time, but the incident has thrown the Utah homemaker’s life into a whirlwind of frustrations. Vivian also speaks with Meagan Holt, a Parent of cannabis patient child named Maddie, and her story of her daughter ended up Surviving Hospice with the help of Cannabis Oil. Last year, Meagan and Brandon Holt’s daughter, who suffers from a rare and debilitating disease called Zellweger Syndrome, was given only a short time to live, and her family was forced to do what no family can ever imagine – put a 2-year-old in Hospice care. Maddie is deaf and blind, and entirely dependent upon round the clock medical care. Prior to being placed in Hospice care, Maddie developed life-threatening horrific seizures which sent her health into a downward spiral. But then something amazing happened. Meagan began researching the effects of cannabis on intractable, or untreatable epilepsy. She found one last hope, cannabis. Being in Washington state, where medical and recreational marijuana is legal, Meagan got authorization, and then a beautiful group of people began donating whole plant cannabis extract to their family.

Cannabis activist Meagan Holt speaks at Hempfest 2017 about her daughter Maddie Holt. Maddie was born with Zellweger Syndrome and her mother has used cannabis medicine to heal her daughter.

Meagan Holt speaking at the Seattle Cannabis Freedom March about her experiences using cannabis to treat her daughter who has Zellweger Syndrome.

David and Nancy Guthrie – These parents watched helplessly as two beloved infants died of Zellweger Syndrome. They talk to Wayne about how God has used their grief to reach out to other hurting parents through Respite Retreats.

David and Nancy Guthrie – These parents watched helplessly as two beloved infants died of Zellweger Syndrome. They talk to Wayne about how God has used their grief to reach out to other hurting parents through Respite Retreats.

David and Nancy Guthrie – These parents watched helplessly as two beloved infants died of Zellweger Syndrome. They talk to Wayne about how God has used their grief to reach out to other hurting parents through Respite Retreats.

David and Nancy Guthrie – These parents watched helplessly as two beloved infants died of Zellweger Syndrome. They talk to Wayne about how God has used their grief to reach out to other hurting parents through Respite Retreats.