August 29, 2025 • 37 mins
“Hope has to evolve and change.”
These powerful words shaped the extraordinary journey of Martha Sharkey, Founder & CEO of Today is a Good Day — a nonprofit creating a lifeline for families navigating the Neonatal Intensive Care Unit (NICU).
When Martha and her husband, Paul, welcomed identical twin daughters at just 23 weeks, their world turned upside down. Claire weighed barely over a pound. Mary, only slightly more. Two weeks later, they faced the devastating loss of Mary, while continuing to fight alongside Claire through 103 days in intensive care before she finally came home.
That experience revealed a critical gap in support for NICU families: emotional guidance, practical resources, and community connection during one of life’s most isolating challenges. Out of that gap, Today is a Good Day was born.
Over the past 11 years, the organization has grown from basement operations into partnerships with 24 hospitals across seven states. Through care packages, “Navigate the NICU” sessions, direct financial support, and a robust online community, Martha and her team provide what she once longed for: comfort, connection, and the reminder that families are not alone.
Martha’s story is one of resilience, loss, and transformation — but also of hope that shifts and adapts as life unfolds. Her family’s mantra of “one day at a time” offers profound wisdom not just for NICU parents, but for anyone facing uncertainty.
In this episode of Hope Comes to Visit, Martha reminds us that even in the darkest places, a small gesture — a journal, a milestone card, a bonding square — can carry the light forward.
You can lern more about Today is a Good Day right here.
You can also connect with Martha on LinkedIn.
Thank you for listening to Hope Comes to Visit. If this episode resonated with you, please follow, rate, and share the show — it helps others find their way to these conversations.
New episodes drop every Monday and Friday, so you can begin and end your week with a little light and a lot of hope.
For more stories, reflections, and ways to connect, visit www.DanielleElliottSmith.com or follow along on Instagram @daniellesmithtv and @HopeComestoVisit
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
And she said, martha, hope has to evolve and change.
And that simple line broughttears to my eyes because I
thought so much about ourexperience with our son William,
when he was diagnosed withtrisomy 18 at 14 weeks gestation
.
There was there.
You don't know what the futureholds for you.
Speaker 2 (00:30):
Hi there, I'm Danielle Elliott Smith, and this
is Hope Comes to Visit.
This podcast was born from thebelief that even in the darkest
times, light can find its waythrough.
I'm really excited you're hereto join us today.
Wherever you are, I certainlyhope that this episode meets you
where you are.
My guest today has made it herlife's work to help people find
(00:54):
their way through in difficulttimes.
Martha Sharkey is the founderand CEO of Today is a Good Day,
a nonprofit providing personaland financial support for
families who experience theneonatal intensive care unit.
Martha and her husband, paul,founded Today is a Good Day in
honor of their daughter Claireand in memory of their daughter
(01:15):
Mary.
Following their extended stayin the neonatal intensive care
unit, the Sharkees recognized agap in care for parents and
families navigating the NICUjourney.
They founded Today is a GoodDay to fill that gap, to support
families.
Martha is passionate abouthelping communities and people
grow and persevere, especiallyduring challenging times.
(01:36):
She has led the effort toadvance the mission of Today is
a Good Day, expanding its reachto 24 hospitals and
organizational partners in sevenstates over the past 11 years.
Let's take a quick moment tothank the people that support
and sponsor the podcast.
When life takes an unexpectedturn, you deserve someone who
(01:56):
will stand beside you.
St Louis attorney Chris Dulleyoffers experienced one-on-one
legal defense.
Call 314-384-4000 or314-DUI-HELP, or you can visit
Dullelawfirmcom that'sD-U-L-L-E-Lawfirmcom for a free
consultation.
Martha, thank you so much forbeing here with me.
Speaker 1 (02:19):
Oh, thanks for having me join you as a guest.
It's great to be here.
Speaker 2 (02:22):
It is.
I was reading more about yourstory and it's you are the
reason that I am doing storieslike this.
People who have somehow takenan extremely difficult time in
their life and said I want toshow people that there is a way
(02:46):
through, and even more so inyour situation.
You are not just saying it'spossible to make it through, but
you're holding out your handand saying I'm going to help you
do it, because when I was goingthrough it, there were missing
pieces and I want to.
I want to make this journeyeasier, for you.
Speaker 1 (03:09):
That's why we found it today is a good day.
Try and help others goingthrough it.
Speaker 2 (03:13):
I would love, if I would love our listeners to hear
a little bit about your story.
So if you wouldn't mind sharinga little bit about you and Paul
and and Mary and Claire sharinga little bit about you and Paul
and Mary and Claire and howthis started.
Speaker 1 (03:33):
Sure Well, thanks again for having me.
We found out.
My husband and I are proud PennStaters.
We went to Penn State, metthere, got married at Penn State
and after we had gotten marrieda few years later, found out we
were expecting identical twingirls.
Very exciting for our family,as you can imagine.
Speaker 2 (03:45):
And we thought.
Speaker 1 (03:46):
You know, like so many get pregnant, you have a
baby, you start a family.
Not how our story went, but ourdaughters were due March 8th of
2011.
And I'll never forget the day,november 9th of 2010.
Something didn't feel right.
I was at work, I went in, I wasput into bed rest with big
(04:07):
hopes to make it for severalmore months, since our daughters
were not due until March.
They arrived just five dayslater, at 23 weeks and five days
, claire weighed one pound twoounces and Mary weighed one
pound four ounces, and we werethrown into the NICU not knowing
anything about it.
Speaker 2 (04:21):
Had they had the doctors, prepared you at all for
the potential that the girlsmight come even slightly early?
Was that even on your radar?
Speaker 1 (04:30):
It was on our radar that they could come early, but
in our minds we thought we werein control of the situation.
We're like OK, we're doing allthe things we're supposed to do.
We have several more months.
We're going to be in thishospital room for Thanksgiving.
The holidays kick off the newyear.
That is not how our story wentand we really didn't have any
family members or friends whohad experienced the neonatal
(04:51):
intensive care unit, andespecially with babies born so
prematurely, as our daughterswere before six months
gestational age.
It was a really scary time forus, and when the girls were born
, claire was actually our weakertwin.
When the girls were born, marywas a little bit stronger and
(05:12):
then, two weeks into our journey, unfortunately, mary lost her
fight the Sunday afterThanksgiving and, as we said
goodbye to her that Sunday, wewent back to Claire, who was
continuing to fight, by to her.
That Sunday we went back toClaire who was continuing to
fight.
She had dropped below a pound,she was very sick and we we I
still remember my husbandlooking at me and he said we're
(05:33):
going to leave here with two oneor none, and we're going to be
okay whichever path is chosenfor us.
And that was when the doctorshad done their consult with us,
actually before the girls wereborn, and so we weren't sure
what our future held.
Speaker 2 (05:47):
That is a very heavy experience to go from we're
expecting twins to bed rest tofive days later you're in the
NICU, not even having beenfamiliar with the NICU.
Been familiar with the NICU tolosing one of your girls, to
(06:10):
putting all of your attention onClaire and not knowing what to
expect.
How long was Claire in the NICU?
Speaker 1 (06:14):
Claire ended up spending 103 days in the NICU,
and a story that I alwaysremember.
We worked really closely withthe medical team members, the
neonatologist and the rug hadcome for the girls' room along
with both cribs.
So my husband had gone home.
He got one of the cribs out ofthe nursery.
The rug was still rolled up andI said we're not going to put
(06:37):
that rug out until we know thatClaire is coming home, because
we weren't sure.
And I'll never forget the daythat one of our dear friends,
one of the neonatologists whotook care of Claire and Mary,
looked at Paul and me in theNICU and she said you can put
the rug down, claire's going tocome home.
So she came home three and ahalf months after being in the
(06:57):
NICU.
Speaker 2 (06:58):
Oh, martha, my heart.
It's funny.
As soon as you said that aboutthe rug, I thought you're going
to tell me that you got to putthe rug down.
Yes, and it's those.
Those are core memories, right?
You have those moments whereyou're just like this was the
moment that I knew we actuallywere going to get to take her
home.
Is there an average stay in theNICU for children, for families
(07:21):
going in and out of there?
I, I'm not familiar.
Speaker 1 (07:25):
No, there's really not an average day.
Everybody's story is so uniqueand their journey is all
different.
And there are babies likeClaire and Mary who are in the
NICU, to full-term babies whohad complications at birth or
are medically complex, who spendtime in the NICU, and every
journey is different.
One of the phrases thatfamilies who may spend a week or
a couple of days in the NICUand every journey is different I
you know one of the phrasesthat families who may not, who
(07:47):
may spend a week or a couple ofdays in the NICU.
They say, oh, we were only inthe NICU for seven days and our
rule at today is a good day isto never say only so.
It doesn't matter how long thatyou're in the NICU.
It's not a place that youexpect to be or want to be.
The medical team members areincredible, but it's a scary
time.
It's a experience that's filledwith ups and downs, a roller
(08:08):
coaster ride.
Speaker 2 (08:09):
So at what point do you and Paul say, okay, there is
a way that we want to showother families a little bit of
light while they're goingthrough this experience.
We had no idea what to expect.
There is a way that maybe wecan make this terrifying journey
(08:34):
a little bit softer.
Speaker 1 (08:38):
I think that's a great question.
I think it relates to all ofthe difficult times that many of
us can go through and for Pauland me, we looked back at those
positive moments.
So we live by the motto one dayat a time.
In fact, in our care packageswe give one day at a time
bracelets out to families as areminder and that one day, one
hour, one minute at a time andthe name of our organization,
(09:01):
today is a good day.
We always tried to celebratethe good moments and the good
days that we had with Mary atthe beginning or with Claire
during her extended stay in theNICU.
But I think for all of us welook at those difficult times
and experiences that we have.
Are there pivotal moments thatreally stick out to us?
And for us being in the NICU,there were several moments that
(09:24):
stuck out to us that were soimportant that helped us to
launch.
Today is a good day.
We met a former 23 weeker.
He's now heading off to college.
I was just texting with hismother this week.
Wow, he came in with his momone week after Claire and Mary
were born.
The nurses said you and Paulneed to go meet Sam week after
(09:45):
Claire and Mary were born, thenurses said you and Paul need to
go meet Sam.
He is a 23 weeker.
We went back there.
He was playing on his mom'siPhone.
He gave us so much hope andinspiration.
We left that pizza lunch and wesaid, okay, Sam, successful,
Claire can be successful.
That was actually before Maryhad passed away and Sam, that
little bit of inspiration,inspired us down the road to
(10:06):
start taking Claire back to meetwith families.
When she was 18 months old wemet another family who had twins
and we started going to dinnerwith them.
So it really helped us to say,hey, parents going through the
NICU, caregivers makeconnections with others who are
going through this journey.
Meet them, talk to them, buildthose lifelong friendships.
I was just texting with hertoday.
(10:26):
So there are those pivotalmoments.
Speaker 2 (10:29):
I love that.
I love the way that you'vecreated this community chain of
inspiration, of hope of.
I learned a long time ago thathope is so powerful for us when
we're going through experiences.
Having that taken away ispainful, right when someone just
(10:56):
rips that out from underneathyou, it can be very damaging to
your psyche when you're goingthrough something.
And it is equally and oppositepowerful when someone provides
it for you, when someone comesin and says look, look, what can
be hang in there, and thatfeels as though that is what you
(11:18):
are providing on so many levelsfor so many families.
So how did it start?
What did you guys do first?
Speaker 1 (11:28):
We started taking Claire back and meeting with
families.
We would host pizza lunches.
And then my best friend fromPenn State called me and said I
started your fundraiser page toraise the money for your 501c3.
I'm tired of hearing you talkabout it, so let's get this
thing going.
And the three of us got itstarted.
(11:51):
My best friend, paul and myself.
We just kind of worked together.
She helped to help us raise themoney to apply.
My brother-in-law's an attorney, so we were able to do all the
paperwork and everything weneeded to do.
And then my grandmother, whowas my favorite person another,
martha.
She passed away in July of 2014.
(12:11):
We received our official 501c3status in May of 2014.
So we just celebrated 11 years.
But in July, my nan passed awayand our family said, in lieu of
flowers, please donate to anewly formed foundation.
And we raised our first $3,000to help purchase care packages.
Wow, a tribute to mygrandmother.
And we have taken off since then.
(12:32):
So we ran the organization onthe side for a couple of years.
My husband has a separatefull-time position, as did I.
We ran it on the side and then,at the end of 2017, we had a
real heart to heart about thefuture of Today is a Good Day
and how much it was growing andhow we really couldn't continue
to manage it out of our basement, and so I made the big leap of
(12:56):
faith to step down from myfull-time role to focus fully on
advancing the mission of Todayis a Good Day, and we now have
24 hospital and organizationalpartners, an incredible team of
eight with many NICU familyadvocates working bedside with
families and program coordinatorand just really trying to be
out there to help make adifference for NICU families
(13:17):
going through this journey.
Speaker 2 (13:18):
That's amazing.
What's in a care package?
Speaker 1 (13:21):
Oh, great question.
So they have evolved over theyears, but they started with one
day at a time, bracelets, ajournal.
We journaled every day and thetoday is a good day I started to
share earlier.
But we obviously had a lot ofdifficult moments and difficult
days early on and so anytime thedoctors and nurses would say
today is a good day for Claireor today is a good day for Mary
(13:44):
in their daily reports, wealways jotted that down in our
journal.
Speaker 2 (13:48):
Okay.
Speaker 1 (13:48):
So we have a journal Today.
We have milestone cards sofamilies can record their
milestones and they're blankwith a marker, so every
milestone is different for everyfamily.
Okay, we have one day at a timebracelets, a copy of On the
Night you Were Born, a customswaddle from Kiki Pants.
Resource cards, our podcastcard.
(14:09):
We have a NICU Today podcastfor families.
Virtual Navigate the NICUsessions, all different
resources for families.
Speaker 2 (14:16):
Oh, that's amazing.
So how have you grown intohaving additional hospital
partners?
Are they all in your area?
Speaker 1 (14:25):
A majority of them are in our tri-state area.
We're located right outside ofPhiladelphia is where our
headquarters is located, but wework primarily in this
Philadelphia region into NewJersey and Delaware.
We also have some partners inthe Midwest and then a partner
in South Carolina as well, sowe've grown very organically
through connections and meetingnew people.
Speaker 2 (14:48):
So what are some of your favorite stories through
this experience with?
Today is a Good Day when youthink about the hope that you
are sprinkling in other homes,other families.
I mean when you think about itgrowing organically right.
You hoped that this would touchsomeone in a way that you
(15:16):
needed when things werehappening for you and now you're
connecting with these otherfamilies.
How is it impacting you?
Speaker 1 (15:30):
I think the biggest piece of this and what really
just means so much, is to lookat the community that's been
built.
When I look at where we aretoday, it is because of everyone
who has joined the Today is aGood Day community.
When I look at our NICU MiracleParent Network on Facebook and
(15:53):
the thousand family members whoare a part of that, who
communicate with one another andask questions and ask for
guidance and help from fellowNICU parents, when I look at our
volunteers who come into thisoffice and who are across the
country who weave bondingsquares, which are a part of our
care package, to help withscent between the parent and the
(16:14):
baby that they're littlesquares.
One goes in the isolate, onegoes on the parent's skin and
then they swap them at night theentire Today is a Good Day
community.
It is humbling to see how manypeople have come together
because they've experienced theNICU or they know someone who's
experienced the NICU and theyjust want to help.
So to me, it is the expansionof the mission and the whole
(16:39):
community that has come togetherto help us to get where we are
today.
It's just really incredible.
Speaker 2 (16:45):
What's been the most surprising part of the journey
for you.
Speaker 1 (16:50):
Oh goodness, Most surprising part of the journey,
I think, seeing how big it'sbecome.
If you would have told me that11 years ago, I'm not sure I
would have gone, oh okay.
Well, I'll be sitting heretalking with you, Danielle,
today.
Speaker 2 (17:04):
Today's a good day and having this conversation.
Speaker 1 (17:09):
I think that piece of it.
I also think, just seeing howwe've been able to expand our
offerings, that our team is soopen to saying, well, what more
could we be doing?
Speaker 2 (17:24):
How can?
Speaker 1 (17:25):
we create a better experience for NICU families,
which is where our podcast camefrom and where our virtual
Navigate the NICU sessions camefrom, and our NICU dads group
that my husband started duringCOVID and our Coffee and
Conversations we started.
And all these differentprograms that have just evolved
over the past 11 years, which isnotations we started.
And all these differentprograms that have just evolved
over the past 11 years, which isnot where we started in 2014,.
Right, right and also, I thinkwhat I'm really excited about,
(17:49):
it's grown so much beyond ourfamily story.
I mean, claire is a teenager.
She'll be 15 in November.
Our family story has gone on,but to see how many babies and
families are featured and howmany people have been impacted
by the mission and want to joinin to help others.
Speaker 2 (18:10):
Where can people find out?
Some asking this is a multi,usually I.
I will end the podcast withwhere, like where can people
find this?
But I think this is animportant piece, like where can
people contribute to what you'redoing?
So that's a part of this, butalso what can people do to
support your mission?
Speaker 1 (18:32):
Well, listen, we can talk about it now and we can
talk about it at the end.
Okay, so we can go visit ourwebsite, which is today is a
good day dot org, and on thatwebsite we have so many
opportunities to get involved.
Whether you're a NICU familyand want to reach out and become
a part of our NICU familycommunity, we'd love to hear
(18:53):
from you.
We also have volunteeropportunities for corporations.
We have at home volunteeropportunities for families.
We also have individuals haveat-home volunteer opportunities
For families.
We also have individuals whomake bonding squares for us and
we go through 9,000 to 10,000 ofthose a year because we put two
in all of our care packages andthen give hospital partners
(19:14):
extra bonding squares forfamilies.
But we have volunteers acrossthe country who weave, sew,
crochet, knit our bondingsquares for us and send them to
the office.
I remember one day, I think, wegot four packages in from four
different states, includingAlaska, and that is just really
incredible.
So all of those opportunitiesare available at
(19:35):
todayisagooddayorg.
And then, if you're a NICUfamily going through the NICU,
we have resources.
We can send a care package.
We have virtual programmingweekly.
We have programming emails thatgo out, so lots of
opportunities to get involved.
Speaker 2 (19:50):
And is that available even if the program isn't
currently in someone's hospital?
Speaker 1 (19:55):
Yes, they can reach out to us.
We will send a care packageupon request.
We also have care packagesavailable if family members are
listening in and say, oh, I havea.
Speaker 2 (20:05):
She had boys that, and I don't know the exact but
(20:30):
they were in the twenties theywere when they were born.
They were 20 weekers in thatthey were micro preemies and I
know her story sounds quitesimilar to yours in that it was
a complete surprise and theywere in the NICU for a very,
very, very long time.
And I she's going to be one ofthe first people I call after I
finished talking to you, becausethis, your mission, will be
(20:51):
something that resonates so verydeeply with her.
But, living here in Missouri,is there an opportunity for
someone like her, who was a NICUfamily 13 years ago, to help
potentially start a chapter inlocal Missouri hospitals.
Speaker 1 (21:10):
Yes, that's a great question.
We, we well.
I hope you're going to connectme with her.
Speaker 2 (21:14):
I mean that's for sure.
Yes, I absolutely will.
Her name's Sandy.
I love it, Hi Sandy.
Can't wait to meet you.
She can.
I absolutely will Her name'sSandy.
I love it, Hi Sandy, Can't waitto meet you.
Speaker 1 (21:21):
She can absolutely reach out.
We have opportunities for carepackages and ways for hospitals
to get engaged with us indifferent ways.
Speaker 2 (21:29):
So absolutely, I love that.
See, I just think that one ofthe things I've loved to do my
entire life is connect peopleanyway, and so this just you
know, the podcast just gives meanother opportunity to do that
Connect good people with othergood people and people who are
doing good and hard work.
I just it's.
Could you have ever imaginedthis version of you doing this
(21:57):
type of work doing?
Speaker 1 (21:59):
this type of work.
I have always been in thenonprofit sector Okay, my entire
career, fundraising events.
So the idea of working so in away it's not a departure.
No, I am a believer.
I think we get put on paths inlife that take us in certain
directions.
(22:20):
I think we get put on paths inlife that take us in certain
directions, and I also think ourexperiences can lead us in
certain directions.
I agree what I didn't shareearlier, but we had our twins,
and then we had a full-termdaughter, martha Rose fifth
Martha in the family.
She's 10.
And then we had a son who wasdiagnosed with trisomy 18 in
(22:42):
2018.
And we learned that at 14 weekswhen I was pregnant with him.
I carried him until 34 weeksand he was with us just about an
hour and a half before hepassed away.
Oh, martha, I'm sorry, thank you, but I think all of those life
experiences for us have beenpoured back into the mission of
today is a good day.
(23:02):
So we are focused on the NICUexperience, but we know that
NICU families like ours also gothrough loss, and so making sure
that we have child lossresources available or can help
connect families that may havewith organizations that may have
child loss as a primary focusof their mission is really
important to us.
But I do think, just from alife experience, it's all how
(23:26):
you approach it, and for us itwas.
This was our path that we got.
We have these conversationswith our daughters frequently,
because it's very easy for us tosay this isn't fair, why this
happened to us Absolutely, butwhy didn't it happen to us?
And so what can we do to tryand help other people who are
(23:47):
going through this journey andhelp them to have a better
experience than we did goingthrough it?
Speaker 2 (23:54):
I love that and I love that you're having these
conversations with yourdaughters.
It's so much of my lifeexperience informs this podcast
right, the grief and the lossand the I'm in recovery, so one
day at a time has been afundamental piece of my life.
(24:14):
I'm just celebrated six yearsand it's oh, congrats.
Thank you, and it's funnybecause I had heard the phrase
one day at a time beforechoosing sobriety, and I had
always heard one day at a timeand, and you know sponsors, and,
and they were all just phrasesto me, and I can remember
sitting in a meeting and hearingsomeone say I have to take it
(24:39):
one day at a time because if Ithink about the never again it
will drive me batshit crazy andI thought, oh, there's actually
a meaning behind one day at atime.
Oh, so my goal is I'm making itthrough today, I see, and it's.
I'm making it through today, Isee, and it's.
(25:08):
It's amazing to me how one dayat a time has popped up in so
many aspects of my life, sinceit has truly resonated.
And it really is beautiful inits simplicity.
Right, because what you'retalking to the families about,
and the today is a good day.
The beautiful simplicity ofthat is we're focusing on what
(25:32):
we're doing right now squaresand the, the scent and the, the
love and the light and the, thepeace that you're offering, is
focusing on right here, rightnow.
And what can we do to love onyou and your family and your
child and your children, and I'mI'm in awe of how you have you
(26:02):
and Paul have taken and and yourbest friend as well, your best
friend for saying yeah, I'm notgoing to let you guys just just
let it be this, this thing youtalk about we're going to do, is
your best friend still involved?
Speaker 1 (26:18):
She is.
She served on our boardoriginally.
She now is on one of ourcommittees and it worked out
great.
You talk about people being inyour life.
She is a chief operatingofficer for a large nonprofit
and she has helped withstrategic planning and different
aspects of the organization insuch a meaningful way.
And we were pregnant at thesame time, so her firstborn and
(26:41):
our daughter, claire, are bestfriends for life.
Speaker 2 (26:45):
I love that.
Speaker 1 (26:46):
And they are connected at the hip when they
get to see each other.
They don't live super close tous, but close enough.
So she was at the hospital theday after Claire and Mary were
born to be up here and be there.
How does Claire tell this story?
Oh, interesting, claire justhad her first podcast interview
the other week, so she's outthere.
(27:08):
Luckily she loves drama andtheater, so she's all about the
microphone and the stage.
But she tells her story and wetalk about it a lot because I
think it can sometimes be heavy.
It's heavy for her that she hasa twin who's not here but we
try to be as supportive aspossible and that she and her
sister, martha Rose, have losttwo of their siblings.
Right, how we talk about it,it's something we've had to
(27:32):
handle with their teachers atschool to say they may talk
about it.
Just want to prep you and letyou know that we have four
children.
Two are here with us, two arekeeping.
Want to prep you and let youknow that we have four children
who are here with us, who arekeep and watch from above, and
the girls may say somethingabout their siblings who aren't
here.
But we have always been veryopen about it in our family and
in conversation, and I thinkClaire is as well and she shares
(27:53):
her story.
She was just here todayvolunteering this morning at the
office.
She was just here todayvolunteering this morning at the
office, but she has reallybecome this.
Speaker 2 (28:10):
just she's a walking, talking miracle child, but it
sounds to me like you areraising girls who are
compassionate and heart centeredand who will know who they are
(28:30):
and how to be good heartedpeople in the world.
Speaker 1 (28:37):
We hope so, danielle.
It's the goal.
Martha, I know it's the goal.
Come on, as parents, we do thebest we can right we?
Speaker 2 (28:39):
hope so, danielle.
It's the goal.
Speaker 1 (28:40):
Martha, I know it's the goal but Come on, as parents
, we do the best we can right.
We hope, but that's what wehope for.
Speaker 2 (28:47):
Absolutely.
I mean, I certainly know thatit's what we hope, but doing the
good, heart-centered work thatyou're doing and raising girls
who have had to go through somehard stuff, right, and you've
been honest with them about it,you haven't hidden them from it.
How have they handled thatlevel of honesty from you?
Speaker 1 (29:17):
That's a great question.
I should probably ask them morein depth how they've handled it
, but I I think they've handledit fairly well.
When we look at, they are stillvery blessed to have three of
their grandparents, but I thinkthe idea of loss and uh is
something that we talk aboutreally openly in our family.
(29:40):
So when we would go to thecemetery together and actually
my husband wrote a reallywonderful blog post, a journal
entry on our website, aboutmunchkins with Mary and taking
the girls to go have munchkinsat the cemetery and how it kind
of changed his perspective ofhow he talked about our family
(30:03):
and what Claire shared with himthat day.
But I think they're doing okaywith it.
Speaker 2 (30:11):
How do you define hope?
Speaker 1 (30:14):
Well, hope is something we talk about every
single day.
We talk about community andhope and that is a core part of
our mission.
Our mission is providing hopeand building community, and what
I love about the word hope andI have to paraphrase from a dear
friend of mine she's abereavement nurse at a local
hospital here.
She's become a very good friendover the past number of years,
(30:37):
so she works with families on adaily basis who are experiencing
experiencing child loss.
I mean, she is just anincredible human being, angel,
and I feel so grateful to knowher.
But I interviewed her for oneof our podcast episodes and we
had a real heart to heart.
I oftentimes say if a guestmakes me cry on the podcast and
I'm interviewing them, it's aproblem.
Speaker 2 (31:01):
No, it's actually a good thing, Because, I mean, I
been, I've been made to cry too,but that means that means
you're you're doing a hard workright, Because it means you're
willing to be vulnerable withthem.
Speaker 1 (31:12):
But she said something and I'll pass it along
here.
I'm going to kind of paraphrasea little bit, but this, this
one line she said specificallyand I think it's so important we
started talking about hope andshe said, martha, hope has to
evolve and change.
And that simple line broughttears to my eyes and I had her
explain it a little bit more.
(31:33):
And she talked and this iswhere I'm paraphrasing a bit,
but she talked about when sheworks with a family and a baby's
born that they hope the baby isgoing to survive and if it
looks like the baby is not goingto survive, they hope that they
can give medicine and help thebaby to get better.
And if it ends up looking likethe baby is not going to survive
, they hope that the baby willgo peacefully and be peaceful,
(31:59):
right.
And that, to me, just made metear up because I thought so
much about our experience withour son William when he was
diagnosed with trisomy 18 at 14weeks gestation.
There was there you don't knowwhat the future holds for you,
right, and the hope of beingable to.
(32:22):
We knew he would pass awayafter he was born if he made it
to live birth based upon hisdiagnosis and what it was
looking like, the hope that wewould have a little bit of time
with him, and our hopethroughout that pregnancy really
evolved and changed, and, Ithink, hope for all of us.
You know we were talking aboutthe motto one day at a time.
(32:44):
Look how that fits in.
So many different scenariosright Illness, what you share,
going through recovery, what Ishared about going through the
NICU and not trying to get aheadof ourselves of what our future
would look like, if Clairewould live or not, or what she
would be able to do based uponher prognosis.
All of those mantras certainlyrelate to all the different life
(33:06):
experiences that we have, whichI think is the same with hope,
but hope has to evolve andchange.
It's just something that stickswith me all the time.
Speaker 2 (33:17):
It really is beautiful.
I hadn't thought about it thatway, but it's interesting
because there was someonespecial in my life years ago who
struggled with addiction and I.
It's funny because I used tothink about the word surrender
(33:37):
at the time because he wouldrelapse quite regularly and my
initial hope during that was Ihope he's OK, I hope he's okay,
I hope he's okay.
And then it evolved to I'mseeking, like I'm hoping, for
the strength to handle whateverhappens, because I have to let
(33:57):
go of a piece of it.
I can't control that anymore,but as you were talking, I was
thinking about how my hope hasevolved over time, so you're
really going to have meruminating on that.
Speaker 1 (34:10):
I know I just I it.
It is such an important phraseand I think for her, in the role
that she's had for so manyyears and all that she has seen
and worked through with familiesby by their side, I mean just
an incredible person.
But that around hope has reallystuck with me.
That's beautiful.
Speaker 2 (34:31):
Tell me about your podcast.
Speaker 1 (34:33):
Oh well, it is the Nick you Today podcast,
available on all podcastlistening apps and on our
website.
We have podcast episodefeatured with families sharing
their different experiences thatthey've had.
We also have lifestyle expertswho happen a lot of them to be
connected to the NICU experience, whether they had it themselves
(34:53):
or they had a close familymember who went through it.
We also interview NICU nurses,doctors, and it's a resource for
families.
A resource for families andagain it goes back to a personal
experience.
But when we think about drivingback and forth to the hospital
being able to listen to apodcast, that might have given
us a little bit of hope or alittle bit of guidance and
(35:14):
that's why we created thepodcast.
So we have over 80 episodes and, amazing, We've been doing this
for a number of years now, butNICU today.
Speaker 2 (35:22):
I love it, and so do you also interview people who
have had NICU experiences a longtime ago?
Yes, okay.
Speaker 1 (35:31):
So, oh, you're connecting me with your friend.
We're on it.
Speaker 2 (35:34):
I'm connecting you with people Like how do I?
Because I think her story ispowerful in that I mean her boys
are 13, but I know that it wasa very formative experience in
her life.
So, yes, that we can talk aboutthat later, but I would love
for you to tell our listeners,everywhere they can find you and
(35:57):
today is a good day, so thatthey can learn more and support
everything that you're doing.
Speaker 1 (36:03):
I love it.
Well, danielle, thank you forsharing a little bit about your
story.
Thank you for having me on yourpodcast today and listening
about today is a good day andour family's journey.
You can check out more aboutour mission and ways to get
involved at todayisagooddayorg.
You can also follow us on allof our social media channels at
NickUtoday, on Instagram, onFacebook, and then our LinkedIn
(36:26):
is TodayIsAGoodDay, sodefinitely check it out.
We share a lot of wonderful,inspirational stories from
different NICU families andwould love for you to follow us.
Speaker 2 (36:35):
Oh, Martha, you have been an absolute delight and
this has been hope and light andinspiration, and today is a
good day.
Thank you so much for beinghere with us today.
I'm so incredibly grateful andthank you, friends, for joining
us once again.
It is always so good for myheart to hear this light and
(36:56):
hope and inspiration and storiesand I so hope that we met you
where you are today and I hopethat, because we did, you are
turning around and sharing thisepisode with someone that you
love and connecting to otherpeople you know and making sure
that the people you know andlove are getting a chance to
hear these episodes.
Remember to subscribe and Ihope that you will take good
(37:18):
care of yourself until weconnect again.
Thank you so much for beinghere.
I'm incredibly grateful to thepeople who support and sponsor
the podcast.
Sometimes, life takes a sharpturn and when it does, having
someone steady in your cornercan make all the difference.
Chris Dully is a trusted StLouis attorney who personally
(37:40):
guides his clients throughcriminal defense cases with
clarity, compassion andexperience.
From traffic violations toserious charges, he shows up
fully and directly.
Call 314-384-4000 or314-DUI-HELP or you can visit
dullylawfirmcom for a freeconsultation.
And she said, martha, hope has to evolve and change.
And that simple line broughttears to my eyes because I
thought so much about ourexperience with our son William,
when he was diagnosed withtrisomy 18 at 14 weeks gestation
.
There was there.
You don't know what the futureholds for you.
Speaker 2 (00:30):
Hi there, I'm Danielle Elliott Smith, and this
is Hope Comes to Visit.
This podcast was born from thebelief that even in the darkest
times, light can find its waythrough.
I'm really excited you're hereto join us today.
Wherever you are, I certainlyhope that this episode meets you
where you are.
My guest today has made it herlife's work to help people find
(00:54):
their way through in difficulttimes.
Martha Sharkey is the founderand CEO of Today is a Good Day,
a nonprofit providing personaland financial support for
families who experience theneonatal intensive care unit.
Martha and her husband, paul,founded Today is a Good Day in
honor of their daughter Claireand in memory of their daughter
(01:15):
Mary.
Following their extended stayin the neonatal intensive care
unit, the Sharkees recognized agap in care for parents and
families navigating the NICUjourney.
They founded Today is a GoodDay to fill that gap, to support
families.
Martha is passionate abouthelping communities and people
grow and persevere, especiallyduring challenging times.
(01:36):
She has led the effort toadvance the mission of Today is
a Good Day, expanding its reachto 24 hospitals and
organizational partners in sevenstates over the past 11 years.
Let's take a quick moment tothank the people that support
and sponsor the podcast.
When life takes an unexpectedturn, you deserve someone who
(01:56):
will stand beside you.
St Louis attorney Chris Dulleyoffers experienced one-on-one
legal defense.
Call 314-384-4000 or314-DUI-HELP, or you can visit
Dullelawfirmcom that'sD-U-L-L-E-Lawfirmcom for a free
consultation.
Martha, thank you so much forbeing here with me.
Speaker 1 (02:19):
Oh, thanks for having me join you as a guest.
It's great to be here.
Speaker 2 (02:22):
It is.
I was reading more about yourstory and it's you are the
reason that I am doing storieslike this.
People who have somehow takenan extremely difficult time in
their life and said I want toshow people that there is a way
(02:46):
through, and even more so inyour situation.
You are not just saying it'spossible to make it through, but
you're holding out your handand saying I'm going to help you
do it, because when I was goingthrough it, there were missing
pieces and I want to.
I want to make this journeyeasier, for you.
Speaker 1 (03:09):
That's why we found it today is a good day.
Try and help others goingthrough it.
Speaker 2 (03:13):
I would love, if I would love our listeners to hear
a little bit about your story.
So if you wouldn't mind sharinga little bit about you and Paul
and and Mary and Claire sharinga little bit about you and Paul
and Mary and Claire and howthis started.
Speaker 1 (03:33):
Sure Well, thanks again for having me.
We found out.
My husband and I are proud PennStaters.
We went to Penn State, metthere, got married at Penn State
and after we had gotten marrieda few years later, found out we
were expecting identical twingirls.
Very exciting for our family,as you can imagine.
Speaker 2 (03:45):
And we thought.
Speaker 1 (03:46):
You know, like so many get pregnant, you have a
baby, you start a family.
Not how our story went, but ourdaughters were due March 8th of
2011.
And I'll never forget the day,november 9th of 2010.
Something didn't feel right.
I was at work, I went in, I wasput into bed rest with big
(04:07):
hopes to make it for severalmore months, since our daughters
were not due until March.
They arrived just five dayslater, at 23 weeks and five days
, claire weighed one pound twoounces and Mary weighed one
pound four ounces, and we werethrown into the NICU not knowing
anything about it.
Speaker 2 (04:21):
Had they had the doctors, prepared you at all for
the potential that the girlsmight come even slightly early?
Was that even on your radar?
Speaker 1 (04:30):
It was on our radar that they could come early, but
in our minds we thought we werein control of the situation.
We're like OK, we're doing allthe things we're supposed to do.
We have several more months.
We're going to be in thishospital room for Thanksgiving.
The holidays kick off the newyear.
That is not how our story wentand we really didn't have any
family members or friends whohad experienced the neonatal
(04:51):
intensive care unit, andespecially with babies born so
prematurely, as our daughterswere before six months
gestational age.
It was a really scary time forus, and when the girls were born
, claire was actually our weakertwin.
When the girls were born, marywas a little bit stronger and
(05:12):
then, two weeks into our journey, unfortunately, mary lost her
fight the Sunday afterThanksgiving and, as we said
goodbye to her that Sunday, wewent back to Claire, who was
continuing to fight, by to her.
That Sunday we went back toClaire who was continuing to
fight.
She had dropped below a pound,she was very sick and we we I
still remember my husbandlooking at me and he said we're
(05:33):
going to leave here with two oneor none, and we're going to be
okay whichever path is chosenfor us.
And that was when the doctorshad done their consult with us,
actually before the girls wereborn, and so we weren't sure
what our future held.
Speaker 2 (05:47):
That is a very heavy experience to go from we're
expecting twins to bed rest tofive days later you're in the
NICU, not even having beenfamiliar with the NICU.
Been familiar with the NICU tolosing one of your girls, to
(06:10):
putting all of your attention onClaire and not knowing what to
expect.
How long was Claire in the NICU?
Speaker 1 (06:14):
Claire ended up spending 103 days in the NICU,
and a story that I alwaysremember.
We worked really closely withthe medical team members, the
neonatologist and the rug hadcome for the girls' room along
with both cribs.
So my husband had gone home.
He got one of the cribs out ofthe nursery.
The rug was still rolled up andI said we're not going to put
(06:37):
that rug out until we know thatClaire is coming home, because
we weren't sure.
And I'll never forget the daythat one of our dear friends,
one of the neonatologists whotook care of Claire and Mary,
looked at Paul and me in theNICU and she said you can put
the rug down, claire's going tocome home.
So she came home three and ahalf months after being in the
(06:57):
NICU.
Speaker 2 (06:58):
Oh, martha, my heart.
It's funny.
As soon as you said that aboutthe rug, I thought you're going
to tell me that you got to putthe rug down.
Yes, and it's those.
Those are core memories, right?
You have those moments whereyou're just like this was the
moment that I knew we actuallywere going to get to take her
home.
Is there an average stay in theNICU for children, for families
(07:21):
going in and out of there?
I, I'm not familiar.
Speaker 1 (07:25):
No, there's really not an average day.
Everybody's story is so uniqueand their journey is all
different.
And there are babies likeClaire and Mary who are in the
NICU, to full-term babies whohad complications at birth or
are medically complex, who spendtime in the NICU, and every
journey is different.
One of the phrases thatfamilies who may spend a week or
a couple of days in the NICUand every journey is different I
you know one of the phrasesthat families who may not, who
(07:47):
may spend a week or a couple ofdays in the NICU.
They say, oh, we were only inthe NICU for seven days and our
rule at today is a good day isto never say only so.
It doesn't matter how long thatyou're in the NICU.
It's not a place that youexpect to be or want to be.
The medical team members areincredible, but it's a scary
time.
It's a experience that's filledwith ups and downs, a roller
(08:08):
coaster ride.
Speaker 2 (08:09):
So at what point do you and Paul say, okay, there is
a way that we want to showother families a little bit of
light while they're goingthrough this experience.
We had no idea what to expect.
There is a way that maybe wecan make this terrifying journey
(08:34):
a little bit softer.
Speaker 1 (08:38):
I think that's a great question.
I think it relates to all ofthe difficult times that many of
us can go through and for Pauland me, we looked back at those
positive moments.
So we live by the motto one dayat a time.
In fact, in our care packageswe give one day at a time
bracelets out to families as areminder and that one day, one
hour, one minute at a time andthe name of our organization,
(09:01):
today is a good day.
We always tried to celebratethe good moments and the good
days that we had with Mary atthe beginning or with Claire
during her extended stay in theNICU.
But I think for all of us welook at those difficult times
and experiences that we have.
Are there pivotal moments thatreally stick out to us?
And for us being in the NICU,there were several moments that
(09:24):
stuck out to us that were soimportant that helped us to
launch.
Today is a good day.
We met a former 23 weeker.
He's now heading off to college.
I was just texting with hismother this week.
Wow, he came in with his momone week after Claire and Mary
were born.
The nurses said you and Paulneed to go meet Sam week after
(09:45):
Claire and Mary were born, thenurses said you and Paul need to
go meet Sam.
He is a 23 weeker.
We went back there.
He was playing on his mom'siPhone.
He gave us so much hope andinspiration.
We left that pizza lunch and wesaid, okay, Sam, successful,
Claire can be successful.
That was actually before Maryhad passed away and Sam, that
little bit of inspiration,inspired us down the road to
(10:06):
start taking Claire back to meetwith families.
When she was 18 months old wemet another family who had twins
and we started going to dinnerwith them.
So it really helped us to say,hey, parents going through the
NICU, caregivers makeconnections with others who are
going through this journey.
Meet them, talk to them, buildthose lifelong friendships.
I was just texting with hertoday.
(10:26):
So there are those pivotalmoments.
Speaker 2 (10:29):
I love that.
I love the way that you'vecreated this community chain of
inspiration, of hope of.
I learned a long time ago thathope is so powerful for us when
we're going through experiences.
Having that taken away ispainful, right when someone just
(10:56):
rips that out from underneathyou, it can be very damaging to
your psyche when you're goingthrough something.
And it is equally and oppositepowerful when someone provides
it for you, when someone comesin and says look, look, what can
be hang in there, and thatfeels as though that is what you
(11:18):
are providing on so many levelsfor so many families.
So how did it start?
What did you guys do first?
Speaker 1 (11:28):
We started taking Claire back and meeting with
families.
We would host pizza lunches.
And then my best friend fromPenn State called me and said I
started your fundraiser page toraise the money for your 501c3.
I'm tired of hearing you talkabout it, so let's get this
thing going.
And the three of us got itstarted.
(11:51):
My best friend, paul and myself.
We just kind of worked together.
She helped to help us raise themoney to apply.
My brother-in-law's an attorney, so we were able to do all the
paperwork and everything weneeded to do.
And then my grandmother, whowas my favorite person another,
martha.
She passed away in July of 2014.
(12:11):
We received our official 501c3status in May of 2014.
So we just celebrated 11 years.
But in July, my nan passed awayand our family said, in lieu of
flowers, please donate to anewly formed foundation.
And we raised our first $3,000to help purchase care packages.
Wow, a tribute to mygrandmother.
And we have taken off since then.
(12:32):
So we ran the organization onthe side for a couple of years.
My husband has a separatefull-time position, as did I.
We ran it on the side and then,at the end of 2017, we had a
real heart to heart about thefuture of Today is a Good Day
and how much it was growing andhow we really couldn't continue
to manage it out of our basement, and so I made the big leap of
(12:56):
faith to step down from myfull-time role to focus fully on
advancing the mission of Todayis a Good Day, and we now have
24 hospital and organizationalpartners, an incredible team of
eight with many NICU familyadvocates working bedside with
families and program coordinatorand just really trying to be
out there to help make adifference for NICU families
(13:17):
going through this journey.
Speaker 2 (13:18):
That's amazing.
What's in a care package?
Speaker 1 (13:21):
Oh, great question.
So they have evolved over theyears, but they started with one
day at a time, bracelets, ajournal.
We journaled every day and thetoday is a good day I started to
share earlier.
But we obviously had a lot ofdifficult moments and difficult
days early on and so anytime thedoctors and nurses would say
today is a good day for Claireor today is a good day for Mary
(13:44):
in their daily reports, wealways jotted that down in our
journal.
Speaker 2 (13:48):
Okay.
Speaker 1 (13:48):
So we have a journal Today.
We have milestone cards sofamilies can record their
milestones and they're blankwith a marker, so every
milestone is different for everyfamily.
Okay, we have one day at a timebracelets, a copy of On the
Night you Were Born, a customswaddle from Kiki Pants.
Resource cards, our podcastcard.
(14:09):
We have a NICU Today podcastfor families.
Virtual Navigate the NICUsessions, all different
resources for families.
Speaker 2 (14:16):
Oh, that's amazing.
So how have you grown intohaving additional hospital
partners?
Are they all in your area?
Speaker 1 (14:25):
A majority of them are in our tri-state area.
We're located right outside ofPhiladelphia is where our
headquarters is located, but wework primarily in this
Philadelphia region into NewJersey and Delaware.
We also have some partners inthe Midwest and then a partner
in South Carolina as well, sowe've grown very organically
through connections and meetingnew people.
Speaker 2 (14:48):
So what are some of your favorite stories through
this experience with?
Today is a Good Day when youthink about the hope that you
are sprinkling in other homes,other families.
I mean when you think about itgrowing organically right.
You hoped that this would touchsomeone in a way that you
(15:16):
needed when things werehappening for you and now you're
connecting with these otherfamilies.
How is it impacting you?
Speaker 1 (15:30):
I think the biggest piece of this and what really
just means so much, is to lookat the community that's been
built.
When I look at where we aretoday, it is because of everyone
who has joined the Today is aGood Day community.
When I look at our NICU MiracleParent Network on Facebook and
(15:53):
the thousand family members whoare a part of that, who
communicate with one another andask questions and ask for
guidance and help from fellowNICU parents, when I look at our
volunteers who come into thisoffice and who are across the
country who weave bondingsquares, which are a part of our
care package, to help withscent between the parent and the
(16:14):
baby that they're littlesquares.
One goes in the isolate, onegoes on the parent's skin and
then they swap them at night theentire Today is a Good Day
community.
It is humbling to see how manypeople have come together
because they've experienced theNICU or they know someone who's
experienced the NICU and theyjust want to help.
So to me, it is the expansionof the mission and the whole
(16:39):
community that has come togetherto help us to get where we are
today.
It's just really incredible.
Speaker 2 (16:45):
What's been the most surprising part of the journey
for you.
Speaker 1 (16:50):
Oh goodness, Most surprising part of the journey,
I think, seeing how big it'sbecome.
If you would have told me that11 years ago, I'm not sure I
would have gone, oh okay.
Well, I'll be sitting heretalking with you, Danielle,
today.
Speaker 2 (17:04):
Today's a good day and having this conversation.
Speaker 1 (17:09):
I think that piece of it.
I also think, just seeing howwe've been able to expand our
offerings, that our team is soopen to saying, well, what more
could we be doing?
Speaker 2 (17:24):
How can?
Speaker 1 (17:25):
we create a better experience for NICU families,
which is where our podcast camefrom and where our virtual
Navigate the NICU sessions camefrom, and our NICU dads group
that my husband started duringCOVID and our Coffee and
Conversations we started.
And all these differentprograms that have just evolved
over the past 11 years, which isnotations we started.
And all these differentprograms that have just evolved
over the past 11 years, which isnot where we started in 2014,.
Right, right and also, I thinkwhat I'm really excited about,
(17:49):
it's grown so much beyond ourfamily story.
I mean, claire is a teenager.
She'll be 15 in November.
Our family story has gone on,but to see how many babies and
families are featured and howmany people have been impacted
by the mission and want to joinin to help others.
Speaker 2 (18:10):
Where can people find out?
Some asking this is a multi,usually I.
I will end the podcast withwhere, like where can people
find this?
But I think this is animportant piece, like where can
people contribute to what you'redoing?
So that's a part of this, butalso what can people do to
support your mission?
Speaker 1 (18:32):
Well, listen, we can talk about it now and we can
talk about it at the end.
Okay, so we can go visit ourwebsite, which is today is a
good day dot org, and on thatwebsite we have so many
opportunities to get involved.
Whether you're a NICU familyand want to reach out and become
a part of our NICU familycommunity, we'd love to hear
(18:53):
from you.
We also have volunteeropportunities for corporations.
We have at home volunteeropportunities for families.
We also have individuals haveat-home volunteer opportunities
For families.
We also have individuals whomake bonding squares for us and
we go through 9,000 to 10,000 ofthose a year because we put two
in all of our care packages andthen give hospital partners
(19:14):
extra bonding squares forfamilies.
But we have volunteers acrossthe country who weave, sew,
crochet, knit our bondingsquares for us and send them to
the office.
I remember one day, I think, wegot four packages in from four
different states, includingAlaska, and that is just really
incredible.
So all of those opportunitiesare available at
(19:35):
todayisagooddayorg.
And then, if you're a NICUfamily going through the NICU,
we have resources.
We can send a care package.
We have virtual programmingweekly.
We have programming emails thatgo out, so lots of
opportunities to get involved.
Speaker 2 (19:50):
And is that available even if the program isn't
currently in someone's hospital?
Speaker 1 (19:55):
Yes, they can reach out to us.
We will send a care packageupon request.
We also have care packagesavailable if family members are
listening in and say, oh, I havea.
Speaker 2 (20:05):
She had boys that, and I don't know the exact but
(20:30):
they were in the twenties theywere when they were born.
They were 20 weekers in thatthey were micro preemies and I
know her story sounds quitesimilar to yours in that it was
a complete surprise and theywere in the NICU for a very,
very, very long time.
And I she's going to be one ofthe first people I call after I
finished talking to you, becausethis, your mission, will be
(20:51):
something that resonates so verydeeply with her.
But, living here in Missouri,is there an opportunity for
someone like her, who was a NICUfamily 13 years ago, to help
potentially start a chapter inlocal Missouri hospitals.
Speaker 1 (21:10):
Yes, that's a great question.
We, we well.
I hope you're going to connectme with her.
Speaker 2 (21:14):
I mean that's for sure.
Yes, I absolutely will.
Her name's Sandy.
I love it, Hi Sandy.
Can't wait to meet you.
She can.
I absolutely will Her name'sSandy.
I love it, Hi Sandy, Can't waitto meet you.
Speaker 1 (21:21):
She can absolutely reach out.
We have opportunities for carepackages and ways for hospitals
to get engaged with us indifferent ways.
Speaker 2 (21:29):
So absolutely, I love that.
See, I just think that one ofthe things I've loved to do my
entire life is connect peopleanyway, and so this just you
know, the podcast just gives meanother opportunity to do that
Connect good people with othergood people and people who are
doing good and hard work.
I just it's.
Could you have ever imaginedthis version of you doing this
(21:57):
type of work doing?
Speaker 1 (21:59):
this type of work.
I have always been in thenonprofit sector Okay, my entire
career, fundraising events.
So the idea of working so in away it's not a departure.
No, I am a believer.
I think we get put on paths inlife that take us in certain
directions.
(22:20):
I think we get put on paths inlife that take us in certain
directions, and I also think ourexperiences can lead us in
certain directions.
I agree what I didn't shareearlier, but we had our twins,
and then we had a full-termdaughter, martha Rose fifth
Martha in the family.
She's 10.
And then we had a son who wasdiagnosed with trisomy 18 in
(22:42):
2018.
And we learned that at 14 weekswhen I was pregnant with him.
I carried him until 34 weeksand he was with us just about an
hour and a half before hepassed away.
Oh, martha, I'm sorry, thank you, but I think all of those life
experiences for us have beenpoured back into the mission of
today is a good day.
(23:02):
So we are focused on the NICUexperience, but we know that
NICU families like ours also gothrough loss, and so making sure
that we have child lossresources available or can help
connect families that may havewith organizations that may have
child loss as a primary focusof their mission is really
important to us.
But I do think, just from alife experience, it's all how
(23:26):
you approach it, and for us itwas.
This was our path that we got.
We have these conversationswith our daughters frequently,
because it's very easy for us tosay this isn't fair, why this
happened to us Absolutely, butwhy didn't it happen to us?
And so what can we do to tryand help other people who are
(23:47):
going through this journey andhelp them to have a better
experience than we did goingthrough it?
Speaker 2 (23:54):
I love that and I love that you're having these
conversations with yourdaughters.
It's so much of my lifeexperience informs this podcast
right, the grief and the lossand the I'm in recovery, so one
day at a time has been afundamental piece of my life.
(24:14):
I'm just celebrated six yearsand it's oh, congrats.
Thank you, and it's funnybecause I had heard the phrase
one day at a time beforechoosing sobriety, and I had
always heard one day at a timeand, and you know sponsors, and,
and they were all just phrasesto me, and I can remember
sitting in a meeting and hearingsomeone say I have to take it
(24:39):
one day at a time because if Ithink about the never again it
will drive me batshit crazy andI thought, oh, there's actually
a meaning behind one day at atime.
Oh, so my goal is I'm making itthrough today, I see, and it's.
I'm making it through today, Isee, and it's.
(25:08):
It's amazing to me how one dayat a time has popped up in so
many aspects of my life, sinceit has truly resonated.
And it really is beautiful inits simplicity.
Right, because what you'retalking to the families about,
and the today is a good day.
The beautiful simplicity ofthat is we're focusing on what
(25:32):
we're doing right now squaresand the, the scent and the, the
love and the light and the, thepeace that you're offering, is
focusing on right here, rightnow.
And what can we do to love onyou and your family and your
child and your children, and I'mI'm in awe of how you have you
(26:02):
and Paul have taken and and yourbest friend as well, your best
friend for saying yeah, I'm notgoing to let you guys just just
let it be this, this thing youtalk about we're going to do, is
your best friend still involved?
Speaker 1 (26:18):
She is.
She served on our boardoriginally.
She now is on one of ourcommittees and it worked out
great.
You talk about people being inyour life.
She is a chief operatingofficer for a large nonprofit
and she has helped withstrategic planning and different
aspects of the organization insuch a meaningful way.
And we were pregnant at thesame time, so her firstborn and
(26:41):
our daughter, claire, are bestfriends for life.
Speaker 2 (26:45):
I love that.
Speaker 1 (26:46):
And they are connected at the hip when they
get to see each other.
They don't live super close tous, but close enough.
So she was at the hospital theday after Claire and Mary were
born to be up here and be there.
How does Claire tell this story?
Oh, interesting, claire justhad her first podcast interview
the other week, so she's outthere.
(27:08):
Luckily she loves drama andtheater, so she's all about the
microphone and the stage.
But she tells her story and wetalk about it a lot because I
think it can sometimes be heavy.
It's heavy for her that she hasa twin who's not here but we
try to be as supportive aspossible and that she and her
sister, martha Rose, have losttwo of their siblings.
Right, how we talk about it,it's something we've had to
(27:32):
handle with their teachers atschool to say they may talk
about it.
Just want to prep you and letyou know that we have four
children.
Two are here with us, two arekeeping.
Want to prep you and let youknow that we have four children
who are here with us, who arekeep and watch from above, and
the girls may say somethingabout their siblings who aren't
here.
But we have always been veryopen about it in our family and
in conversation, and I thinkClaire is as well and she shares
(27:53):
her story.
She was just here todayvolunteering this morning at the
office.
She was just here todayvolunteering this morning at the
office, but she has reallybecome this.
Speaker 2 (28:10):
just she's a walking, talking miracle child, but it
sounds to me like you areraising girls who are
compassionate and heart centeredand who will know who they are
(28:30):
and how to be good heartedpeople in the world.
Speaker 1 (28:37):
We hope so, danielle.
It's the goal.
Martha, I know it's the goal.
Come on, as parents, we do thebest we can right we?
Speaker 2 (28:39):
hope so, danielle.
It's the goal.
Speaker 1 (28:40):
Martha, I know it's the goal but Come on, as parents
, we do the best we can right.
We hope, but that's what wehope for.
Speaker 2 (28:47):
Absolutely.
I mean, I certainly know thatit's what we hope, but doing the
good, heart-centered work thatyou're doing and raising girls
who have had to go through somehard stuff, right, and you've
been honest with them about it,you haven't hidden them from it.
How have they handled thatlevel of honesty from you?
Speaker 1 (29:17):
That's a great question.
I should probably ask them morein depth how they've handled it
, but I I think they've handledit fairly well.
When we look at, they are stillvery blessed to have three of
their grandparents, but I thinkthe idea of loss and uh is
something that we talk aboutreally openly in our family.
(29:40):
So when we would go to thecemetery together and actually
my husband wrote a reallywonderful blog post, a journal
entry on our website, aboutmunchkins with Mary and taking
the girls to go have munchkinsat the cemetery and how it kind
of changed his perspective ofhow he talked about our family
(30:03):
and what Claire shared with himthat day.
But I think they're doing okaywith it.
Speaker 2 (30:11):
How do you define hope?
Speaker 1 (30:14):
Well, hope is something we talk about every
single day.
We talk about community andhope and that is a core part of
our mission.
Our mission is providing hopeand building community, and what
I love about the word hope andI have to paraphrase from a dear
friend of mine she's abereavement nurse at a local
hospital here.
She's become a very good friendover the past number of years,
(30:37):
so she works with families on adaily basis who are experiencing
experiencing child loss.
I mean, she is just anincredible human being, angel,
and I feel so grateful to knowher.
But I interviewed her for oneof our podcast episodes and we
had a real heart to heart.
I oftentimes say if a guestmakes me cry on the podcast and
I'm interviewing them, it's aproblem.
Speaker 2 (31:01):
No, it's actually a good thing, Because, I mean, I
been, I've been made to cry too,but that means that means
you're you're doing a hard workright, Because it means you're
willing to be vulnerable withthem.
Speaker 1 (31:12):
But she said something and I'll pass it along
here.
I'm going to kind of paraphrasea little bit, but this, this
one line she said specificallyand I think it's so important we
started talking about hope andshe said, martha, hope has to
evolve and change.
And that simple line broughttears to my eyes and I had her
explain it a little bit more.
(31:33):
And she talked and this iswhere I'm paraphrasing a bit,
but she talked about when sheworks with a family and a baby's
born that they hope the baby isgoing to survive and if it
looks like the baby is not goingto survive, they hope that they
can give medicine and help thebaby to get better.
And if it ends up looking likethe baby is not going to survive
, they hope that the baby willgo peacefully and be peaceful,
(31:59):
right.
And that, to me, just made metear up because I thought so
much about our experience withour son William when he was
diagnosed with trisomy 18 at 14weeks gestation.
There was there you don't knowwhat the future holds for you,
right, and the hope of beingable to.
(32:22):
We knew he would pass awayafter he was born if he made it
to live birth based upon hisdiagnosis and what it was
looking like, the hope that wewould have a little bit of time
with him, and our hopethroughout that pregnancy really
evolved and changed, and, Ithink, hope for all of us.
You know we were talking aboutthe motto one day at a time.
(32:44):
Look how that fits in.
So many different scenariosright Illness, what you share,
going through recovery, what Ishared about going through the
NICU and not trying to get aheadof ourselves of what our future
would look like, if Clairewould live or not, or what she
would be able to do based uponher prognosis.
All of those mantras certainlyrelate to all the different life
(33:06):
experiences that we have, whichI think is the same with hope,
but hope has to evolve andchange.
It's just something that stickswith me all the time.
Speaker 2 (33:17):
It really is beautiful.
I hadn't thought about it thatway, but it's interesting
because there was someonespecial in my life years ago who
struggled with addiction and I.
It's funny because I used tothink about the word surrender
(33:37):
at the time because he wouldrelapse quite regularly and my
initial hope during that was Ihope he's OK, I hope he's okay,
I hope he's okay.
And then it evolved to I'mseeking, like I'm hoping, for
the strength to handle whateverhappens, because I have to let
(33:57):
go of a piece of it.
I can't control that anymore,but as you were talking, I was
thinking about how my hope hasevolved over time, so you're
really going to have meruminating on that.
Speaker 1 (34:10):
I know I just I it.
It is such an important phraseand I think for her, in the role
that she's had for so manyyears and all that she has seen
and worked through with familiesby by their side, I mean just
an incredible person.
But that around hope has reallystuck with me.
That's beautiful.
Speaker 2 (34:31):
Tell me about your podcast.
Speaker 1 (34:33):
Oh well, it is the Nick you Today podcast,
available on all podcastlistening apps and on our
website.
We have podcast episodefeatured with families sharing
their different experiences thatthey've had.
We also have lifestyle expertswho happen a lot of them to be
connected to the NICU experience, whether they had it themselves
(34:53):
or they had a close familymember who went through it.
We also interview NICU nurses,doctors, and it's a resource for
families.
A resource for families andagain it goes back to a personal
experience.
But when we think about drivingback and forth to the hospital
being able to listen to apodcast, that might have given
us a little bit of hope or alittle bit of guidance and
(35:14):
that's why we created thepodcast.
So we have over 80 episodes and, amazing, We've been doing this
for a number of years now, butNICU today.
Speaker 2 (35:22):
I love it, and so do you also interview people who
have had NICU experiences a longtime ago?
Yes, okay.
Speaker 1 (35:31):
So, oh, you're connecting me with your friend.
We're on it.
Speaker 2 (35:34):
I'm connecting you with people Like how do I?
Because I think her story ispowerful in that I mean her boys
are 13, but I know that it wasa very formative experience in
her life.
So, yes, that we can talk aboutthat later, but I would love
for you to tell our listeners,everywhere they can find you and
(35:57):
today is a good day, so thatthey can learn more and support
everything that you're doing.
Speaker 1 (36:03):
I love it.
Well, danielle, thank you forsharing a little bit about your
story.
Thank you for having me on yourpodcast today and listening
about today is a good day andour family's journey.
You can check out more aboutour mission and ways to get
involved at todayisagooddayorg.
You can also follow us on allof our social media channels at
NickUtoday, on Instagram, onFacebook, and then our LinkedIn
(36:26):
is TodayIsAGoodDay, sodefinitely check it out.
We share a lot of wonderful,inspirational stories from
different NICU families andwould love for you to follow us.
Speaker 2 (36:35):
Oh, Martha, you have been an absolute delight and
this has been hope and light andinspiration, and today is a
good day.
Thank you so much for beinghere with us today.
I'm so incredibly grateful andthank you, friends, for joining
us once again.
It is always so good for myheart to hear this light and
(36:56):
hope and inspiration and storiesand I so hope that we met you
where you are today and I hopethat, because we did, you are
turning around and sharing thisepisode with someone that you
love and connecting to otherpeople you know and making sure
that the people you know andlove are getting a chance to
hear these episodes.
Remember to subscribe and Ihope that you will take good
(37:18):
care of yourself until weconnect again.
Thank you so much for beinghere.
I'm incredibly grateful to thepeople who support and sponsor
the podcast.
Sometimes, life takes a sharpturn and when it does, having
someone steady in your cornercan make all the difference.
Chris Dully is a trusted StLouis attorney who personally
(37:40):
guides his clients throughcriminal defense cases with
clarity, compassion andexperience.
From traffic violations toserious charges, he shows up
fully and directly.
Call 314-384-4000 or314-DUI-HELP or you can visit
dullylawfirmcom for a freeconsultation.
Popular Podcasts
NFL Daily with Gregg Rosenthal
Gregg Rosenthal and a rotating crew of elite NFL Media co-hosts, including Patrick Claybon, Colleen Wolfe, Steve Wyche, Nick Shook and Jourdan Rodrigue of The Athletic get you caught up daily on all the NFL news and analysis you need to be smarter and funnier than your friends.
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com