A Guiding Light
November 2020
1
Table of Contents PAGE 4
Hope Forward: The Mairs Family PAGE 7
Hope Forward: The Ward Family PAGE 10
Hope Forward: The Thielges Family PAGE 13
A Year Unike Any Other PAGE 15
Recapping Love & Light PAGE 16
Upcoming Events
2020 Honor + Rise Events: • • • • • • •
Lou's Light Henry's 3rd Birthday Ellis' 3rd Birthday Celebration Angel Baby Mile Tee It Up For Spencer Golfin' For The Girls Miles for Max
We are grateful for those who planned and hosted beautiful events in honor of their children this year.
Copyright 2020 Hopeful Heart Project and Tellwell
2
Thank you for supporting our mission!
There's no question:
2020 has been a challenging year for nonprofits. Like many organizations, Hopeful Heart Project depends heavily on events to both serve our community and raise funds to support our mission. We have been able to pivot many of our events, including our monthly yoga classes, Mother’s Day Floral Class, and annual retreat to take place either virtually or outdoors. We even had 175 families participate in our first virtual Love & Light event this October. One event that we were not able to host due to COVID-19 was
Hope Forward, our largest fundraising event of the year. That
event alone can bring in as much as $30,000 in one night—a significant amount for a small organization like ours.
We are humbly asking our supporters to help Hopeful Heart
Project raise the funds we otherwise would have raised at Hope Forward. Your gift will allow us to continue providing parents the
support, resources, and hope they need as they walk through unimaginable loss and find strength for a brighter future.
No gift is too small. Here are just a few examples of the impact your gift can have for parents in our community: •
$50 covers the fee for a single group class.
•
$150 provides a personalized and locally sourced Hope Gift.
•
$300 provides parents with deeply personal bereavement support, including doula services.
•
$500 makes one retreat experience possible for a parent.
Please donate to our Hope Forward campaign at
www.givehopeforward.org. With your support, we can continue to provide meaningful events and programming, build our community of support, and walk with parents on their long path to healing.
Thank you,
Kayla & Jen Kayla & Jen
3
Hope Forward:
The Story of Paityn Wiley Mairs It was a Thursday just like any other. Garett and Jennifer Mairs dropped their two girls, Paityn and her big sister Paisley, off at daycare. They played, they snacked, they snuggled. And that’s when the day like any other changed. “The phone rang, and it was the daycare,” Jennifer said. “When they went to check on her, at some point she had
4
stopped breathing.”
Just like any other day, four-month-old Paityn went down for a nap. But this time, she did not wake up.
Garett and Jennifer rushed to the hospital. Minutes felt like hours as they wondered what could have possibly
happened to make their happy, healthy little girl suddenly stop breathing.
“That drive felt very long,” Garett said. “A million things go through your head, but honestly I thought that everything was going to be okay because it's just not something that happens. A four month old doesn't just stop breathing and not start breathing again.”
After what felt like the longest
The two years that have passed since that day have been filled
reached the hospital before the
she were still alive today?
car ride of their lives, they
ambulance that was carrying Paityn.
They
waited
and
waited, leaning on one another and the family members that had started to arrive, until they
with questions: What happened to Paityn? Who would she be if
“Paityn could have been anything,” Garett said. “You just don't know if she was going to be a hyper kid or an easy-going kid, if she was gonna love to be outside or anything like that. The possibilities are kind of endless. So it's just the thought of not
finally heard over the intercom
knowing what could have been.”
wants to hear:
Nothing can prepare a parent for the loss of a child, and no
Code Blue, pediatric.
through the Hopeful Heart Project, Jennifer and Garett have
the words that no parent ever
person can ease the dull, persistent ache of grief entirely. But
A nurse found Garett and
Jennifer and escorted them to
the room where sweet Paityn was undergoing CPR.
found the support and resources they need to help navigate their grief and remember their precious baby girl.
“My first Hopeful Heart Project event was a yoga class,” Jennifer
said. “I was kind of hesitant to go. I was just going to go and do yoga and come home. And after the class, a bunch of us
“I just remember seeing her
moms got together and we ended up talking for about four
little feet. They were giving
hours. It was so therapeutic just to talk to other moms who had
her CPR, and we just sat in the
been through the same thing. We were able to just openly share
corner and kind of watched
about our children. We just formed an instant bond.”
helplessly,”
Jennifer
said.
“Eventually they did a blood test and the nurse told us that the results of that blood test would let us know if there was anything else they could do. And a few minutes later they came in and said that there wasn't
Garett and Jennifer have discovered a community of parents who understand the whirlwind of emotions they have experienced—
the deep sadness, the anger, and even the immense joy and fear of having another child after loss.
anything else we could do. She was gone.” Today, Paityn and Paisley have a baby brother named Paxton.
Remembering Paityn
Garett and Jennifer are determined to make Paityn a part of
Paxton’s life. They celebrate her birthday every year, and have
Paityn Wiley Mairs was born on January 23rd,
2018. Garett and Jennifer say she was the
sweetest little baby, with an infectious smile and big blue eyes that never seemed to close.
“She didn’t sleep very well,” Jennifer said. “We used to say that she knew she didn't have long, and she didn't want to miss anything.” Paityn went home to Heaven on May 31st, 2018. She was only four months old.
While Garett, Jennifer, and their family were
able to spend a few hours holding and loving
on Paityn in the hospital, in the end, they walked out of those doors without their baby.
5
planted trees in their yard in her honor. Their home is filled
never meet her in this lifetime, Paxton will grow up knowing
her every day, sharing stories (like Paisley’s personal favorite,
That, Jennifer says, is what they wish more people understood:
with photographs of all three of their children. They talk about the time when “baby Paityn peed all over her”). While he may
that he has another big sister in Heaven. they want to talk about Paityn.
No one should hesitate to mention her name for fear of upsetting or hurting them. Yes, losing Paityn is the most painful thing Garett and Jennifer have ever endured; but there is joy in remembering her, in hearing her name.
“Every loss parent just wants their child to be remembered,” Jennifer said. “We don’t want them to be forgotten. And Hopeful Heart Project provides endless ways for us to remember them and honor their memory.” Watch Garett and Jennifer’s full story on Facebook or our website during our virtual Hope Forward fundraising event.
To learn more about Hopeful Heart Project or make a donation, please visit
www.givehopeforward.org
6
Hope Forward:
The Story of Caleb Michael Ward Emily and Taner Ward discovered they were pregnant with their son, Caleb, on August 6th, 2019. They were nervous, at first—their daughter, Clara, was only eight months old at the time—but those nerves quickly gave way to excitement. “We were ecstatic,” Emily said. “I went and got it confirmed the next day and told Taner, and we were just ready. We were ready for him.” For 34 weeks, Emily’s pregnancy went off without a hitch. She
rarely experienced any symptoms, other than a few headaches here and there.
“I couldn't have asked for an easier pregnancy,” Emily said. “All of our appointments were great. His heartbeat was always strong. We had no indication that there would ever be anything to go south.” On March 3rd, Emily woke up to another perfectly normal day.
She buckled Clara into her carseat, and the two of them visited Taner at work for lunch.
It wasn’t until four in the afternoon that Emily began to feel like something was off.
Continued on page 8
7
“I realized that I hadn't felt him move all day,” Emily said. “And
shown no complications in over eight months, was gone.
I just thought, well, maybe I've just been busy. I've been moving around. Maybe he's just having a lazy day.” Emily called Taner and asked him to pick up a Doppler, a
handheld ultrasound device, on his way home from work. When
“They said they could still see the blood flow on the ultrasound, that it had happened really recently,” Emily said. “We were just too late.”
Taner arrived, they used the Doppler to try and pick up Caleb’s
After about 17 hours of labor, Caleb Michael Ward was born on
machine on Taner to see if they were using it properly, and
“They helped us
heartbeat—nothing. They continued to try, even testing the
when it did not read Taner’s heartbeat, they chalked it up to user error.
Still, they packed up Clara and drove to the hospital for tests, just to be safe.
“We were holding hands and Clara was babbling in the back and I just remember thinking, you know, I'm just nervous, he was having a lazy day and I just wasn't paying attention enough,” Emily said. “This doesn't really happen in real life. You don't think it's ever going to happen to you.”
March 5th, 2020, at 5:13 a.m. It was the hardest night of their
weather the storm when we weren't sure if we could do it ourselves.” lives, but Taner and Emily were never alone. Caleb was born
Laid to Rest
surrounded by friends, family, and two Hopeful Heart Project
When they arrived at the hospital, Emily and Taner received
“They were just so welcoming and compassionate,” Emily said.
the worst possible news: a hyper-coiled cord at his abdomen
had cut off all nutrients and oxygen. Their baby boy, who had
8
doulas, Kayla and Hannah.
“It was amazing having family come in to support us, but it's just a completely different feeling when you have people come
great that we got to meet him and hold him, but knowing that we're not going home with him was really hard,” Taner
said. “It was very comforting knowing that we were the last ones that laid him down and it wasn't just some stranger.”
Weather the Storm No grief journey is the same, and for Caleb and Emily, the process has included
challenges many of us could never even imagine. The COVID-19 pandemic
brought life to a sudden halt just one week after Caleb passed away; it was not until October, seven months after his
death, that Taner and Emily were able to mourn him in the presence of friends and family with a memorial service.
All the while, they have struggled to help
Clara, not even two years old, understand and process her own grief.
“I don't really fully understand if she knew exactly what was going on at that time, in who have been through the same storm that you're going through in that moment. They've come out stronger and they know how to comfort you and convince you that you can come out stronger, too.” Kayla and Hannah stayed with the Wards for a full day after Caleb was born, as friends and family took turns holding him, taking pictures, and getting prints of his tiny hands and feet.
And when it was time for Caleb to go, they advocated for Taner and Emily every step of the way.
It is standard procedure for a funeral director to carry a baby
from the delivery room to the hearse, but Kayla told the funeral director, “They’ve got this.”
Emily and Taner were able to accompany their son from their hospital room to the care of a funeral director. They were
inspired by Kayla's words to take every possible opportunity
they could get with Caleb. They have peace with the fact they
but she definitely knows who he is now. She knows that there's somebody very special to us that's not actually here with us,” Emily said. “She says his name, and she kisses his urn every night before bed. So that’s very special.” Taner and Emily will spend the rest of their lives trying to
understand what happened to Caleb, but they will never have to walk this journey alone. Hopeful Heart Project will be there every step of the way.
“Hopeful Heart Project has supported us through everything,” Emily said. “When we went into the hospital the night that Caleb died, we were completely unprepared for what was to come. They helped us through every wave of emotion and they helped us weather the storm when we weren't sure if we could do it ourselves.” Watch Emily and Taner's full story on Facebook or our website during our virtual Hope Forward fundraising event.
accompanied Caleb every step of the way, through every
moment of his time here on earth. Emily and Taner were the first and the last to hold their son.
“There was just a whirlwind of emotions that entire day, feeling
To learn more about Hopeful Heart Project or make a donation, please visit
www.givehopeforward.org
9
Hope Forward:
The Story of Mari Joanne Thielges “Every time we had a negative test, we felt a little bit more defeated, over and over again,” Kelsey Thielges said. “I got in the shower that morning after I took the test, and I didn't think anything of it because all my tests were negative.” A positive pregnancy test can set off a whirlwind of emotions for any first-time parent: joy, surprise, excitement, anxiety. But
when you have tried to conceive for more than 18 months, a few more emotions enter the mix: elation, relief, complete and utter amazement.
When Kelsey stepped out of the shower, the test sitting on the
counter revealed the one word she had waited years to see: pregnant.
All those dreams of onesies, cribs, and little baby feet came flooding back to her. She’d imagined so many elaborate ways she would tell her husband, Casey, that they were finally pregnant.
“Instead, I just screamed,” Kelsey recalled. “He came running in and said, ‘You’ve got to be more careful in the shower.’ I just was standing there holding the test and we were just so happy. It felt like we had done it. We were pregnant.”
A Perfect Pregnancy The first three months of Kelsey’s pregnancy were textbook perfect. Aside from the usual morning sickness, Kelsey had no symptoms—no reason to believe that anything could be wrong.
Kelsey’s 20 week appointment was scheduled for early August
2018. It was a milestone they’d long awaited: this would be
10
their first opportunity to take home a good, clear picture to
the screen: there was fluid around the baby’s heart, lungs, belly,
“It was a day we had marked on our calendars for quite some
“There was fluid essentially everywhere. I think at that point I
time,” Casey said.
still had a little hope that we could do something. And then he
The appointment began as normal. The ultrasound technician
“And that's when he pointed out with a pen that there was
share the news with their friends and extended families.
turned the screen to face them, and for the first time, Kelsey
and spine.
asked the ultrasound tech to move to the head,” Kelsey said. what's called a cystic hygroma, a fluid-filled sac, on the back
and Casey could see their baby’s head, its abdomen, its tiny
of our baby's neck that was about twice the size of the head.”
have a baby in a few months.
Then, they heard the last two words that any parent wants to
little feet. For the first time, it felt real—they were going to
But Kelsey could see that baby was not moving. The ultrasound technician asked Kelsey to stand up, move around, and try to get the baby to flip so she could photograph the spine.
hear.
“We heard ‘I'm sorry,’” Kelsey said. “‘Your baby has a 20 percent chance of making it to term and less than a one percent chance of living if it does.’ And then I think I just broke into a
She left for a second and I think I did jumping jacks, some
million pieces.”
images and said, ‘Okay, you'll go up and see your OB.’ And we went.”
The Butterfly Blanket
As they walked to meet the OB, Kelsey tried to push the
A genetic test was performed to determine the cause of the
the room, she knew something was wrong. The nurse did not
Thielgeses received their answer: their baby had Turner’s
squats, and laid back down. She came in and took a few more
negative thoughts from her mind. But as soon as they entered check her weight or test her blood pressure; she simply asked Kelsey and Casey to sit down.
The doctor explained to Kelsey and Casey that there was
something unusual with the ultrasound picture. He pointed to
abnormalities in the baby's body, and four days later, the
Syndrome, a condition that affects only females and results when one of the X chromosomes is missing or partially missing. In some cases, women can live completely normal lives with
Turner’s syndrome; in others, like theirs, the defect can be fatal. The Thielgeses had a decision to make: they could either terminate the pregnancy or continue to carry their baby,
knowing she would not live. After days of discussing, praying, and weighing the risks, they decided to continue with the pregnancy.
Kelsey’s medical team determined that she should come in for weekly ultrasounds.
“It was at our first scheduled ultrasound that we went in and I laid on the table and the ultrasound tech put the jelly on and within seconds, our little baby girl was on the screen, except this time you could see that there was no heartbeat,” Kelsey said. “I remember turning to Casey and saying, ‘I think she’s gone.’” Kelsey was induced that day, and on August 17th, 2018, Mari Joanne Thielges was born silent at 23 weeks gestation.
After the nurses had taken Mari to clean her up and take prints of her hands and feet, they brought her back swaddled in a purple butterfly blanket. That butterfly blanket brought more
comfort, promise, and calm than any hugs, well wishes, or words could hold.
Continued on page 12 11
“My grandma passed away when I was about 12 and butterflies
just said, ‘You can't get pregnant.’ And then I called two weeks
have always been a symbol that I see and when I think of her,”
later, I was like, ‘Surprise!’” Kelsey said. “But I never felt safe. I
Kelsey said. “I had just an overwhelming sense of calm that we
never felt like it was going to be okay with Jack. I was constantly
had made the right decision...like Grandma had her.”
waiting for the shoe to drop.”
Kelsey and Casey were able to spend twelve hours with Mari.
Hopeful Heart Project walked with Kelsey and Casey through
of her features, her parents could still recognize the telltale
excitement and their fear. And since Jack entered the world a
While the amount of fluid in Mari’s body had distorted some Thielges feet, with a space between her first two toes, and Kelsey’s distinctive upper lip.
“As much as she maybe didn't look exactly like we imagined, she was perfect and she was ours,” Kelsey said.
their second pregnancy, providing a safe place to share their
happy, healthy little boy, we have continued to walk together through their grief.
Through Hopeful Heart Project, Kelsey and Casey have found an outlet to love Mari out loud, to honor her memory, and to
share those memories with Jack as he grows. They have formed
Love Out Loud
a community of families who can grieve, celebrate, and walk the
Those days were the darkest of Kelsey and Casey’s lives.
“Hopeful Heart Project created a safe space for our community,
long path to healing together.
our families that are navigating life without their children,” In the two years that have passed since Mari’s birth, they have been able to find joy in having her. They celebrate her birthday
Kelsey said. “It allows us to have a voice, to be able to share our memories and share our experience. And I think just having
with a butterfly release every year, and carry Mari with them
that network of others who can relate is one of the strongest
everywhere they go.
support systems you can have.”
“As traumatic as it was, it was also really incredible,” Kelsey said.
Watch Kelsey and Casey’s full story on Facebook or our website
“Mari made me a mom, and I don't want that fact to be lost.”
during our virtual Hope Forward fundraising event.
And for as long as it took to get pregnant with Mari, her little brother, Jack, made his appearance shortly after.
“We had joked with our OB at my six week appointment, she
12
To learn more about Hopeful Heart Project or make a donation, please visit
www.givehopeforward.org
“The healing you allow to happen will look so different this year because we are all leaning on ourselves more than we ever would have before.� Our guest speaker, Katie Jameson, spoke those words at our virtual Love & Light event on October 10th, 2020. It
was an event unlike any other, in a year
unlike any other. Rather than gathering
over food and drink, sharing laughter,
tears, and embraces, we came together across our computer screens.
While COVID-19 prevented us from
gathering in person, Love & Light was
Like many organizations, we quickly
celebrate life, and to find comfort in the
place either outdoors or virtually. The
still an opportunity for us to grieve, to
community of parents we have formed through Hopeful Heart Project.
As we have taken the time to reflect on 2020, Katie’s words have stuck with us. We have had to lean on ourselves, and
each other, more than ever before. Our mission and our work are deeply rooted in connections with others; when it
became clear that COVID-19 would limit
our ability to connect in all aspects of our lives, we needed to make sure that we had ways to reach newly bereaved
parents and continue providing support to those we already knew and loved.
pivoted our in-person events to take
first to change was our yoga class,
which we were able to move to a local park during the warmer months. The next event we had to reimagine was
our Mother's Day Floral Class. This class is an opportunity for mothers to come and create a custom floral arrangement
with guidance from a floral design professional. Mothers who have lost
children should never be forgotten on
this special holiday, especially during
these challenging times. We found a way to personally deliver the supplies and provided a video tutorial so they could create their floral arrangements from the safety of their own homes.
13
Our annual retreat also needed to be reconsidered, so
we pivoted to a weekly virtual series focused on topics of
mindfulness, self care, and the effects of seasonal change.
given up hope, and we feel more inspired than ever as we head into our fourth year.
And finally, this October, we held our first-ever virtual Love &
We truly hope, like everyone else, that we can bring back
participate in Love & Light this year—more than any of the
to continue expanding our reach, as we know there are still
Light event. Even with this virtual format, we had 175 families years we’ve been able to gather in-person.
COVID-19 has taken so much from so many, but it will never
take the passion we have for this work and the commitment
we’ve made to our community. In fact, despite the many challenges we’ve faced along the way, 2020 has been a year of immense growth for Hopeful Heart Project. We have practiced
resiliency, a tool we work with our families to achieve in their
our in-person programming and events 2021. We also want many families who experience loss who have not received our information and support. We want our name to become
synonymous with this experience so that every person, whether or not they have been personally touched by loss, knows about Hopeful Heart Project and the services we provide.
“We have never given up hope, and we feel more inspired than ever as we head into our fourth year.”
We also hope to create a safe haven for all parents by providing more programming including the dads in our community.
Finally, we would like to create a volunteer network within our
organization, creating opportunities for the many families we serve who want to give back in honor of their children.
If this year has taught us anything, it is that no one can predict what the future holds. But whatever 2021 brings, we will continue to lean on one another, to provide meaningful events
and programming (even if we have to get creative with the format), and build our community of love, support, and healing.
healing, every day. We have supported hundreds of families on
varying levels, from simply providing a Hope Gift, to fostering friendships between parents, to providing deeply personal bereavement doula services.
We are so proud to have launched HopeTree bereavement services this year. The program now has two doulas, who go
to the hospital, or the family's home during and after a loss to assist the family with their experience. This program has been so well received by each family that has worked with us that we
are considering training and adding another doula in the next year for our team.
The challenges of running a non-profit organization are only
compounded in the midst of a pandemic, but we feel we have taken each roadblock and found a way around. We have never
14
Sending you love and light always,
Kayla & Jen Kayla & Jen
Co-Founders of Hopeful Heart Project
Thank you for attending Love & Light
We hope it was a time of healing, hope, love, and light.
Check out our Virtual Love & Light Event at www.loveandlight2020.org 15
122 1/2 Broadway North Fargo, ND 58102
Upcoming
Events
Holiday Wreath Workshop December 2020
Recurring Yoga Monthly
Day Retreat Experience Winter of 2021
Giving Hearts Day February 11TH, 2021
16
We all have a story and we are longing to hear yours. Please do not hesitate to contact us at info@hopefulheartproject.org