As Long As I'm Living

Photos and videos are woefully inadequate substitution for your living breathing baby, but they are all that is left after they die.

In this episode, Judith and Alina talk about the photos and videos they have of Aiden and Quinn. What is it like to look at them? How do they feel about sharing them with others? How did they choose which ones got printed for the walls in their homes? And of course: the dreaded phone lock screen...

This is something we are super curious to hear others' thoughts on... please visit us on Instagram (linked below) and let us know how you feel!

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Things we talk about in this episode:

- Now I Lay Me Down To Sleep

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

This episode is a peek into what recording As Long As I'm Living podcast is really like. Spoiler: it's a hot mess.

There are internet issues, devices running out of charge, distractions, and so much more nonsense. This is not unusual, Alina just normally edits it out before we release the episodes for all of you.

In this episode, we *try* to talk about the physical side effects of grief, but we're releasing it as a bonus today because despite there being some interesting content in there, we will absolutely be recording a more useful, polished version of this some time soon that will probably cover some of the same information. We do have some announcements and fun chatter in the beginning, so we hope you still enjoy it!

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Things we talk about in this episode:

- Mothering a Grieving Mother, Interviews With Our Moms | As Long As I'm Living

- Start Healing Together, an Interview with Jackie Mancinelli, Richard's Mom | As Long As I'm Living

- There Is No Moving On, an Interview with Jennifer Su, Aeron's Mom | As Long As I'm Living

- TFMR Is Baby Loss, an Interview with Jill, Hadley's Mom | As Long As I'm Living

- Our first grief retreat

- How to Carry What Can't Be Fixed: A Journal For Grief, Megan Devine

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

Dr. Jennifer Su is a pediatric cardiologist and the mother of her beloved son Aeron, who died of SIDS in February 2018. 

Judith and Alina have... well.... dumb jobs. They both have been able to give themselves the grace to be bad at their jobs in the aftermath of their sons' deaths, but Jenn and her husband, a pediatrician, did not have that option as their jobs are life and death. How did they "move on" from the loss and return to work again? The answer is: they didn't. Loss colors everything. 

This is the second of our two-episode Return to Work series. Click here for our interview with Jackie Mancinelli, an educator and the founder of Start Healing Together.

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Things we talk about in this episode:

Aeron's Foundation

Charlie's Kids - safe sleep advocacy

Aeron in the Sky

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

Jackie Mancinelli is the founder and senior advocate for Start Healing Together, an organization by teachers and for teachers that provides information, instruction, and support to help alleviate the stigmas surrounding pregnancy loss and infertility. Their goal is trifold: to make members aware of their rights, to offer emotional support, and to direct them to helpful resources. 

Jackie and her husband suffered a missed miscarriage in 2014 and then lost their son, Richard, in 2016 after an emergency delivery. They now have two "rainbow" daughters. Part of Jackie's grieving process focuses on finding a way to honor her son in a way that helps other loss families. She hopes to support other educators like herself while helping to break the stigmas surrounding loss and infertility. Additionally, Jackie is the New Jersey ambassador for Count the Kicks, a non-profit focused on ending preventable stillbirth by educating healthcare providers and expecting parents about accurate kick counting.

Today is Richard's 6th birthday! Please join us in wishing him a happy birthday and honoring Jackie's motherhood today.

If anyone wants to share their story with Jackie, please visit the Start Healing Together website (linked below). They are always accepting submissions!

This is the first of two episodes we are releasing about returning to work. Check back next week for our interview with Dr. Jennifer Su, a pediatric cardiologist and the founder of Aeron's Foundation.

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Things we talk about in this episode:

Massachusetts Paid Family Medical Leave

Start Healing Together website

Start Healing Together Instagram

Tommy's UK

The Worst Girl Gang Ever

Empty Arms, an Interview with Carol McMurrich

Evermore

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

A recently released study has found a link between the biomarker Butyrylcholinesterase (BChE) and SIDS. What does this mean? How do we feel about it? Listen to find out.

If you'd rather watch us have this conversation, click here.

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Things we talk about in this episode:

Butyrylcholinesterase is a potential biomarker for Sudden Infant Death Syndrome

As Long As I'm Living: SIDS, an Interview with Dr. Goldstein of the Roberts Program

As Long As I'm Living: Parental Grief, an Interview with Dr. Goldstein of the Roberts Program

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

We survived Mother's Day! This is a quick little bonus episode of Judith and Alina chatting while they open their mother's day gifts to each other.

Our main episode this week was released yesterday, and it is a great one. We somehow convinced our mothers to come on the podcast and give their thoughts on what it's like to mother a grieving mother. 

Click here to listen: Mothering a Grieving Mother, Interviews with Our Moms

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you! 

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

Meet the Moms behind the Loss Moms! Judith's mom, Marlene, and Alina's mom, Michele, were gracious enough to be interviewed for a very special Mother's Day episode about what it's like to mother a grieving mother and an outside perspective on how the loss of a child affects his mother. 

We think this episode is a fascinating example of how different people respond to the "same" loss.

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Things we talk about in this episode:

- Blown Away (Netflix)

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

Meet Jill. She's the mom of Hadley Maeve, one of baby Quinn's friends in the stars. At Jill's routine anatomy scan, she and her husband Eric were given the devastating news that Hadley had not just one but three life-limiting conditions that would lead to extraordinary suffering from birth onward, if she survived that long. They made the decision to take that pain on themselves and interrupt the pregnancy, and Jill gave birth to Hadley a few days later. They were able to spend a few beautiful moments together before she passed, which you will hear about in the episode.

Jill and her husband are grateful to live in Massachusetts, where it is legal to terminate a pregnancy up to 24 weeks of gestation. If they did not, or if Roe v. Wade were overturned, they would have been forced to, at best, travel out of state and pay out of pocket for this necessary healthcare, or at worst, carry Hadley to term only to watch her suffer.

Today -- May 4th, 2022 -- is the very first TFMR (Termination for Medical Reasons) Awareness Day.

Here at As Long As I'm Living, we know that TFMR is baby loss, TFMR is obstetric care, TFMR is birth, and TFMR is not actually that uncommon. 

We stand with all people who have made or will ever make the choice to end a pregnancy, and we hold especially close to our hearts those like Jill and Eric who had to make the "choice" when their pregnancy was very, very wanted. 

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Things we talk about in this episode:

- TFMR Awareness Day

- Rhombencephalosynapsis, aqueductal stenosis, and ventriculomegaly

- Now I Lay Me Down to Sleep

- Empty Arms

- TFMR Mamas

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Other resources for TFMR parents:

- Time to Talk TFMR podcast

- TFMR Papas

- TGN Therapy instagram

- Petals Charity (UK)

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

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As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

Alina and Judith are recovering from a couple of happy events that sent them reeling. Everyone knows that the bad days are bad, but sometimes the hardest days are the ones that are supposed to be happy. 

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

:::

As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.

Hi friends! We weren't able to get our act together to record anything new for you this week, so we are throwing it back to December when we did an Instagram live answering listener questions! Some of this will sound familiar, as we've talked about it in other places, but some of it is new. If you'd like to watch this content instead of listen, you can watch the live video recording here:

As Long As I'm Living - Live From Boston!

We have LOTS of good things recorded and scheduled for the next few weeks, so stay tuned :) 

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Things we talk about in this episode:

Feeling Herd, Judith's cow hugging article in The Atlantic

Instagram live recording: As Long As I'm Living - Little Triggers Everywhere

Full episode: As Long As I'm Living - Little Triggers Everywhere (we share Judith's grief confession in this episode!)

How we met: As Long As I'm Living - Wishing You a Tolerable Thanksgiving

Our grief retreat

Alina's supermarket adventure: As Long As I'm Living - Alina's Bad Day

More Q&A: As Long As I'm Living - Q&A

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Follow As Long As I'm Living on Instagram at @aslongasimlivingpodcast, send us an email at [email protected], or visit us at anchor.fm/aslongasimliving! We would love to hear from you!

:::

As Long As I'm Living is a podcast about life, love, and laughter after infant loss. Judith and Alina are rebuilding Happier Ever After one day at a time despite excruciating grief and trauma and offering support to grievers of all flavors, but especially those who have lost a baby to SIDS, infant death, birth accidents, stillbirth, TFMR, ectopic pregnancy, or miscarriage.