Gracefully Grieving with HoPE
Written By Stacy Jeanes
Our daughter Grace Inez was a blue-eyed beauty with long eyelashes, perfect eyebrows, and the cutest dimple in her chin. Her captivating smile lit up every room she was in. Her laugh was contagious, and her sweet voice was music to our ears. Her single big front tooth, or “toof” as we called it, was her trademark. She had long thick curly brown hair. She always wore it in a top knot with a BIG bow placed in the center. She was a very loving, spunky, sassy, silly, funny, and mischievous little girl. She could also be extremely serious and give the best side eye. Not only did she radiate pure joy, but she also sparkled.
Grace Inez Jeanes, our precious miracle, the love of our life, was born on earth May 14, 2014, and born into heaven on March 27, 2021. Grace Inez was diagnosed with Semi-lobar Holoprosencephaly, Diabetes Insipidus, and Adrenal Insufficiency shortly after her birth. We knew from the beginning that Grace’s diagnosis did not define her. We did not put any limitations on her. We believed Grace Inez was exactly who God intended her to be. She was perfect in our eyes. We never asked why us or why Grace. I resigned from my job as an elementary school teacher to care for Grace. Our goal was to give her the best life possible. We decided to face her conditions head on. We hit the ground running. We began coordinating her care and never looked back. We became hands on experts in Grace Inez.
We were told that Grace Inez would most likely not live to see her first birthday. The first year of Grace’s life, I felt like I was holding my breath. As she experienced all of her firsts, I was mentally checking the boxes on a list I didn’t even realize I had. It was exciting to see her experience the 4th of July, Halloween, Thanksgiving, Christmas, Valentine’s Day, St. Patrick’s Day, Easter, and finally her first birthday. In case you are wondering, yes, she had an outfit and big bow for each of those celebrations. I let out a huge sigh of relief when she turned one. After her birthday, we found out that Grace was the only one that carried the gene mutation for Holoprosencephaly in our family. That meant her condition was not caused by us. I was finally able to relax after we received those tests results. It confirmed our belief that God made Grace Inez in his image.
Grace lived a happy life. In many ways, she was a normal kid. She loved playing with friends and her cousins. Her favorite color was orange. She loved applesauce, pears, chocolate pudding, buttercream icing, dum dums, and candy canes. Her favorite drink was a Java Chip Frappuccino from Starbucks. She loved listening to praise and worship music as well as Bruno Mars. Her favorite Bruno Mars song was Marry Me. Her favorite book was Ten in the Bed. Her beautiful pink bedroom was her favorite place to spend time. She would get so excited laughing, smiling, and talking each time we brought her home from long a hospitalization. She loved being back home and sleeping in her own bed. Despite being legally blind, she loved to watch tv. She enjoyed watching Caillou, Super Why, Color Crew, Harry the Bunny, and Kidsongs. She would work hard in school or therapy just so she could earn tv time. Her favorite show was Caillou. We called him her bald-headed boyfriend. She would do absolutely anything to watch Caillou. Believe it or not, I actually miss Caillou.
Grace achieved so much in her short life. She was an incredibly hard worker. She could follow simple commands. She could say a handful of words and phrases. She used eye gaze to make choices. She pushed buttons to activate toys and her laptop. She communicated using her voice, wiggling her eyebrows, and wrinkling her nose. These accomplishments did not come easily. But she faced every challenge with strength, grit, and determination.
In 2019, Grace went septic and almost died. She was in the hospital for 3 months. This infection ravaged her little body. She suffered organ and brain damage. One problem would resolve, and another crisis would appear. Her medical team was convinced that she would not survive. But God used Grace Inez to show them the power of prayer. Grace had an army of prayer warriors praying for her recovery. Slowly each organ was healed and began functioning normally. The damage her brain received was in an area of her brain that was already compromised from HPE. When she was discharged from the hospital, she was very weak and frail. This infection had taken a huge toll on her. Grace was never quite the same after sepsis. However, she clawed her way back from the brink of death. Once she was home, she began working to regain the muscle and motor skills she had lost. She also had to find her sweet voice again. We saw the horrific side effects of sepsis on a daily basis. But Grace faced these hurdles with such dignity. She worked and worked to regain her strength. I have never seen anything like it. Grace’s resilience is such an inspiration to everyone around her. We had two more amazing years with her after sepsis. God was not finished with Grace Inez’s story. He spared her life so she could share his joy.
The night before Grace Inez passed away, she looked at me so intensely. She had never looked at me like that before. She locked eyes with me and just stared at me deeply. It was almost like she was staring directly into my soul. She was full of smiles. She was laughing and talking. I took pictures and we laughed together because she was being so silly. I’m so thankful I had those special moments with her. I think she knew she was on her way to heaven. I believe God gave me those beautiful memories as a source of comfort. Once Grace passed away, I immediately started getting signs from her. I call them Grace winks. These winks are coincidences that you just can’t explain away. They generally come in the form of a cardinal sighting and heart shaped rocks or shells. They are obviously from Grace Inez. I’m so thankful God graciously shares those with me and others. Those Grace winks always come when I need them the most. Those winks have taught me to look for the beauty in the ashes of my grief. As we mourn Grace, we have found that music, gardening, and taking trips to the beach have played a huge part in our healing journey. We have a garden in our backyard called Grace’s Garden. We love sitting on the lanai and enjoying all the vibrant pink flowers that surround us.
The hardest thing I have ever done is leave the hospital without my sweet baby girl. I thought we would have more time with her. She was our whole world. Our life revolved around caring for her 24/7. My number one job was to keep her alive. Leaving her behind was excruciating. For months after she passed away, I had a physical pain in my chest. The silence without her was deafening. Her absence was surreal. I had to remind myself each morning that she was actually gone. It felt like when Grace was here, I saw everything in brilliant, bright, bold, and vivid colors. Then suddenly everything was in black and white. Her devastating loss changed my perspective and the way I viewed the world around me. Gradually, I have been able to see the colors again. Although they are dull and muted at times. It’s like the twinkle lights at Christmas. They just don’t twinkle as bright without her. Grace Inez made everything better.
It is difficult to feel like a parent when your only child is gone. I have struggled with what we are called without her. A child without parents is an orphan. If someone loses a spouse, they are called a widow/widower. But what are parents called that have lost a child? Are we just bereaved? I have slowly realized we are still parents. The most important title I will ever have is Mama. I now cling to that title. I can feel Grace’s love every day. My relationship with her is stronger than ever. It just looks a lot different than it did before. One way I can mother her is to honor her legacy. I have learned that my deep grief for Grace Inez is actually my love for her. I have intentionally chosen to embrace my grief. I embrace my grief as if I am embracing her.
When you lose a child, it becomes your mission to keep their memory alive. That mission is fueled by love. It is so important to me for Grace’s name to be said out loud. I say her name every single day. I know that Grace Inez is not only in my past, but she is also in my present, and I will carry her into my future. We know that she lives on through us. We are heartbroken that she is no longer with us. But we are not broken. We continue to fight for her each day. We keep moving forward for her. I know we are able to do this because she made us stronger. She prepared us for this. God used her to mold us into who we are supposed to be. Grace Inez showed us how to live a life of purpose. Our arms may be empty, but our hearts remain full.
I don’t believe it was a coincidence that Grace Inez passed away during Holoprosencephaly Awareness Week. March 27th, 2024, will be her third angelversary in heaven. Even from heaven, she continues to bring attention and awareness to HPE.
We recognized very early on that kids with HPE were incredibly special. Simply being in their presence immerses you in the goodness of God. God continually showered his favor on Grace. Her life had a divine purpose. That amazing life was a series of miracles orchestrated by Him. It is an honor and privilege to have been chosen to be her parents. We witnessed firsthand as God worked in Grace’s life. He used her story of perseverance to share his unconditional love and faithfulness to everyone she encountered. Everybody that came in contact with Grace Inez fell instantly in love with her. Through Grace Inez, he reminded us that he is always in control, he answers our prayers, and he is the giver of all miracles. Grace Inez was the most extraordinary gift that we have ever been given. God showed us the rare beauty in Holoprosencephaly. My prayer is that her story will encourage HPE families to look for their own blessings in Holoprosencephaly.
Grace Inez was my mini me, my sidekick, and my best friend. Grace was also a Daddy’s girl through and through. She absolutely adored her Daddy. He was wrapped around her chubby little finger from day one. One thing I miss more than anything is watching them interact. I miss the tone of her Daddy’s voice when he would speak to her. I also miss the way Grace would look at him with such love and devotion. She didn’t look at anybody the way she looked at her Daddy. She really was our little princess.
We treasure every moment we spent with her. We continue to thank God for her every single day. Grace Inez showed us that we can do hard things. Her setbacks became her triumphs. She inspired us to never give up. She taught us that there is always HoPE. She made a lasting impact just by simply being herself. Every breath she took, and every heartbeat mattered. She was the bravest person I have ever met. She truly is our hero. We will always share Grace Inez’s story as we honor her with random acts of kindness. Her big personality and sweet spirit continue to shine bright.
Please consider a donation to Families for HoPE today to ensure that Stacy and other bereaved parents will find the support and hope they seek.
Posted: June 13, 2024 by lyndot71
Two Vibrant, Young People with HPE Join Us as Ambassadors for HoPE
Ambassador for HoPE Brianna Bixenman was diagnosed with lobar holoprosencephaly at birth. She’s now a twenty-eight-year-old roller coaster enthusiast, studier of tornadoes and other weather events, and loves working with children in a daycare center. Brianna also supports raising funds for Families for HoPE with her big sister Brittany and brother-in-law Eric, as a promoter and awareness raiser at the annual Brainsky Levinson, LLC Golf Outing in Fall River, Massachusetts. The second annual Golf Outing will take place on August 26, 2024. “I love my HoPE family more than everything and that’s why I’m raising awareness!,” Brianna says.
Kal-El Wright is seventeen-years-old. Kal-El was diagnosed with semi-lobar holoprosencephaly after his birth. Kal-El enjoys the company of four family dogs, several chickens, turkeys and cats, and all people. Along with his mom Margie Wright, Kal-El raised awareness and support for Families for HoPE by hosting a successful ‘Cookout for a Cause’ fundraising event in Dale, Indiana.
Brianna and Kal-El join the other Ambassadors for HoPE, including Philip Brewer and his 14-year-old son Maddox, Lauren Edwards, Stacy Jeanes, Hanna Jennings and Jose and Gabby Pena. Families for HoPE is grateful for the support of our Ambassadors for HoPE and for all of the families who are joining our Anchors of HoPE program by making monthly donations in any amount.
Posted: June 13, 2024 by lyndot71
AMBASSADOR FOR HoPE – Kal-El Wright
Outside of school, Kal-El loves listening to music – anything from quiet, sleepy-time music, old country (Big Bad John), new country, and heavy metal. He enjoys a wide range of music. He also enjoys singing, dancing and going to concerts. He has a heart as big as his smile, as becomes evident to anyone fortunate enough to enoy in his presence. Kal-El loves people all the people and randomly picks out the most tough looking ones to give hugs to or start conversations with when we’re out, says Margie.
“While I was pregnant with Kal-El, it was determined by my OB that Kal-El had hydrocephaly,” Margie said. “She assured us that it was a common thing and scheduled us to meet with a neurosurgeon.” The doctors then recommended Margie have a C-section. Once Kal-El was born an MRI resulted in his holoprosencephaly diagnosis. “At that time they diagnosed him with Semi-Lobar Holoprosencephaly and gave us grave hope,” Margie said. “They said that he wouldn’t live and if he did, he wouldn’t have any quality of life, that he would never walk, talk, etc and that he could possibly have seizures.”
Now, when not otherwise active, Kal-El enjoys the company of his family’s 4 dogs- Sarge (13yr old German Shepherd) Saylor (2yr old Boston Terrier) and two Australian Shepherd puppies, Dundee and Moose, that will be a year this summer. The family is training Moose to be Kal-Els service dog but all 3 of the younger pups respond to Kal-El’s seizures in the middle of the night. In addition to canine companions, the Wright’s have several chickens, turkeys and cats outside and one inside rescue cat named Pita. Kal-El loves to be outside, he loves to camp, ride the 4-wheeler and ATV, ride in moms old truck, a ’77 F-150 that Margie’s dad bought her when she was 15. He also loves to ride motorcycles with three, close family friends who take him for rides, enjoys swimming, going to the beach, or lake, and playing in the snow.
Within the last year, Kal-El has really taken a liking to watching wrestling on TV. Margie believes her son’s interest in wrestling comes from his love of all things “The Rock”. The family owns a collection of the shows that Duane Johnson, a.k.a. “the Rock” appears in.
Kal-El’s sense of humor is expressed often. His dad Scott is a Chicago Bears which gives rise to one of his favorite jokes- “Hey Dad Bears lose!” For Father’s Day last year, Margie and Kal-El made Scott a mug that says just that.
When upset, Kal-El can exhibit self-injurious behavior and combative behavior towards caregivers, Margie said. “Challenges that we have had with Kal-El have been, after moving back home to Indiana, I had a hard time finding a physician that didn’t just want to tell me the same old thing, that “the next seizure could be his last” and just overmedicate him,” Margie said. Kal-El has been diagnosed with autism, mild cerebral palsy, gastro-intestinal reflux disease, scoliosis, and temperature irregularities. He struggles with chronic constipation. His seizures are resistant to medications so his has a Vagus Nerve Stimulator (VSN) implant, a device used to treat seizures when drugs are not effective, and surgery is not possible.
In April this year, the family started attending a new church in their tiny, southern Indiana community and Kal-El was baptized. “Kal-El has always been a boy of faith,” his mother said. “He prays about everything, and I do mean everything.”
“A few years ago, while driving past a particular cemetery Kal-El said, “look mom, Jesus!”, Margie said. “He pointed into the cemetery.” When they passed three more cemeteries on our way to town, Margie asked Kal-El if Jesus was there and he said nope at all three. “So on our way back home when we came to the particular cemetery where he told me to look, I asked is this the one and he said yes so we pulled over. We got out to walk around and when he took off running through the cemetery, I asked him what you are doing? He said, ” playing with Jesus.” Pointing to additional evidence of her son’s deep spirituality, Margie said “Kal-El has mentioned my husband’s great Grandma Hazel who passed away 6 years ago.” “He told us that Hazel misses us.” Margie said, “It’s just amazing. I know there is an amazing plan for him. I just do not know what it is but if he can trust I can too.”
Posted: June 13, 2024 by lyndot71
AMBASSADOR FOR HoPE – Brianna Bixenman in Her Own Words
Hi everyone. My name is Brianna.
I was born with lobar Holoprosencephaly. I am now 28 years old.
My parents weren’t given much hope from some doctors when they found out about my HPE when I was born, but that was before they met one of my doctors who I always call my “guardian angel”. She gave my parents and I a lot of HoPE that I was going to survive from the first day she met me. She told the doctors that she has HoPE for me and to watch me do great things when I grow up!
I have a cleft lip and palate and have had 20 surgeries. I also have some learning disabilities, epilepsy that I developed last year, and a chronic nerve disorder unrelated to HPE. Besides all these diagnoses, I’m still holding onto HoPE! My family has always been there for me since day one. They are my anchor who holds me through my life storms.
So, here is a little more about me:
I love to ride roller coasters any chance I get and I love to travel to other parks with my friends. Roller coasters are everything to me. They are a part of my life story, and I wouldn’t want it any other way.
I love to study weather like severe storms. I love to study tornadoes and other storms on my free time. I also work part time at a daycare, and I’ve been there for 10 years, and I absolutely love it!
I also love to educate anyone who likes to hear about my life story. For instance, I go to physical therapy two times a week. I tell the PT students my story and that I have HPE. They are very interested in my diagnosis, so when I leave PT, they go look up it up and learn more.
Going back at age 16, I began to be interested with my brain disorder. I started researching and having it become a class project of learning about what I have and presenting it to my class. This was way before I started to look for groups on Facebook when I was 18.
I then found an amazing group called Families for HoPE, Inc. For some reason my heart told me to join this group and I’m so glad I did. I’ve met so many HoPE families at these conferences held every other year. My HoPE friends that I meet at these conferences are just noting short of miracles! I’ve become so close with them!
At these conferences I’m also able to learn more about my brain disorder so I can raise awareness and educate others because HPE is very rare. I love my HoPE family more than everything and that’s why I’m raising awareness!!
Posted: June 8, 2024 by Leslie, Sammy's mom
Calendar of Events
Calendar of Events as of June 1, 2024
June 8 in Dale, Indiana – Join Kal-El Wright and his family for “Cookout for a Cause” Awareness Event and Fundraiser at Family Roots Nursery, Inc.
July 5 in Sharpsville, Indiana – Join Arika Gates and Leslie Harley for an Awareness Event and Fundraiser at the Sharpsville Festival
August 11-14 in Mason, Ohio – Family Conference on Holoprosencephaly at Great Wolf Lodge and Conference Center
September 14 in Walnut, Mississippi – 2nd annual Homers For HoPE softball tournament in memory of Stetson Williams. Hosted by Chantel and Brian Williams
TBD September in Indianapolis, Indiana – Autumn Motorcycle Ride for HoPE
Do you have a fundraiser or awareness event to add to our list? If so, send a message to info@FamiliesforHoPE.org.
Posted: May 8, 2024 by lyndot71
Anchors for HoPE
Navigating Challenges, Celebrating Triumphs
At Families for HoPE, every member of our community acts as an ambassador, playing a crucial role in steering the ship of support and solidarity for those affected by Holoprosencephaly (HPE). Our ambassadors—whether they are leaders, support staff, or dedicated volunteers—ensure that our mission not only stays on course but also reaches every necessary port.
As part of our commitment to navigating the challenges and celebrating the triumphs of those we serve, we reintroduce our successful Anchors of HoPE program. Initially launched in 2016, this program has been a vital part of our journey, offering a steady foundation from which we can expand and enhance our impact.
Why Your Support Is Crucial
Your monthly contribution of just $5 or more helps sustain our core activities:
Imagine the Impact
If 300-400 individuals join as Anchors of HoPE with a monthly gift of $5, it generates $1,500-$2,000 each month—funds that directly enhance and expand our programs and outreach efforts. Your support goes a long way in ensuring that every member of our community feels connected and supported throughout their journey with HPE.
How to Join
Becoming an Anchor of HoPE is simple. Just click on the anchor. Every anchor adds strength to our mission, and every contribution ensures smoother sailing ahead.
Together, we can create a sea of hope and a network of support that endures. Thank you for considering this commitment to Families for HoPE. Your help is not just appreciated—it’s essential.
Posted: May 7, 2024 by lyndot71
Summer 2024 Newsletter
Posted: March 29, 2024 by lyndot71
Celebrating HPE Awareness Week, Sharing Our Families’ Stories
A Mother Draws Strength from Faith: “I want to give families the hope I have.”
Danielle Monson calls her two-and-a-half-year-old daughter Raelea a miracle. Raelea was born, after Danielle and her husband Zachary had tried to have a baby for thirteen years. They had given up trying and adopted three children by the time Raelea was conceived. The couple was overjoyed at learning their first biological child would soon enter the family.
Because Danielle was over the age of thirty-five, she sought the care of doctors who specialized in high-risk pregnancies. Everything with her pregnancy was moving along smoothly. Shock, confusion and fear came at 16 weeks gestation, when Danielle first heard the word holoprosencephaly (HPE). A rollercoaster ride of uncertainty and anxiety began.
“We were given the diagnosis of holoprosencephaly by my doctor,” Danielle said. “He was very suggestive of terminating the pregnancy from the start and gave us no hope. I told him termination wasn’t an option I would consider.”
It was then that Danielle began a search for information on holoprosencephaly that ultimately led her to Families for HoPE, Inc. and the Families for Hope and Holoprosencephaly Face Book group. “I didn’t join the group right away,” Danielle recalled. “I was too scared and overwhelmed.”
She and Zachary consulted another high-risk pregnancy doctor at 20 weeks and, after a fetal MRI was done, the couple was told that there was no evidence of holoprosencephaly. Except for slightly larger than normal ventricles, the large open structures of the brain filled with cerebrospinal fluid, nothing appeared concerning. It wasn’t until a maternal-fetal medicine specialist completed a fetal MRI at 22 weeks gestation that a diagnosis of semi lobar holoprosencephaly was made. Finally, after another scan at 26 weeks, a diagnosis of the more severe alobar holoprosencephaly was given the couple. Danielle remembers being shown pictures of children diagnosed with alobar HPE, even though the doctor told her the fetal scan had shown none of the midline deformities of eyes, nose, or mouth typically present with the alobar type of HPE. “She is different,” Danielle said the doctor told her. “He said, ‘You’ll just have to watch and see what she can do.’”
Raelae was born at 33 weeks gestation, breathing on her own and strong, despite a cyst that pushed her brain to the front portion of her skull. She was successfully operated on at 4-days old and remained in the NICU for 5 weeks. Coming home as a newborn, she never had any issues with breathing, aspiration or seizures that are most common with holoprosencephaly. “She’s very sweet, she’s got that first child energy,” Danielle said. “You get that she can never do anything wrong. She’s just a sweet soul.” Danielle notes that her daughter is shy with those outside of her family. “She adores her siblings, and they delight in her. She doesn’t smile at everyone but, if she smiles at you, you’re one of her people. She’s an empath and can pick up on the energy of others. She goes for calming energies.”
For Danielle, as a parent of a child diagnosed with HPE, the most important thing she has learned was the most difficult thing she had to learn. “I had to learn to accept that you’re not in control,” she said. “Accepting you’re not in control is hard but, when I was able to accept that, I was able to find peace.” She added that her faith gives her hope and she leans on her faith. “God is who gave us the strength through the pregnancy. We had to lean on Him and not our own understanding,” she said. “When I first got the diagnosis of HPE, I could only think of the things I would never do. I would never see my child walk down a wedding aisle, I would never see her have children and be a grandma to them,” she recalls. “Then I realized that those things in life are never guaranteed any of us. No one is guaranteed another day of life”
“I want to give other families hope I have, “Danielle said. “I don’t know if Raelea will ever walk but, I let her do whatever she can. I put no limitations on her.” Raelea’s presence has given her siblings their abilities of understanding, acceptance, and kindness toward others. Her presence in her family’s life fills their days with hope, peace and love.
Please consider a donation to Families for HoPE today to ensure that Danielle and other parents with a prenatal diagnosis of HPE for their unborn children will find the support they seek.
Posted: March 28, 2024 by Leslie, Sammy's mom
Watch Party Link Updated
https://hyperbeam.com/i/2Xsp_AE0
Posted: March 28, 2024 by lyndot71
Celebrating HPE Awareness Week, Sharing Our Families’ Stories
Phillip Brewer Shares a Dad’s Story of Son Maddox
A dad has special dreams of enjoying good times with their son – from pitching a baseball or football or walking the dog together to hitting the local skateboard park. No dad envisions their son receiving a life-changing diagnosis or almost losing that beloved child twice. Phillip Brewer’s life with son Maddox started out with every wonderful expectation and anticipation of all the things a father and son have to look forward to doing together. Then, when Maddox was 4-months old, Phillip and his former wife learned that their son had holoprosencephaly.
With that diagnosis, a dark chapter empty of hope began. “Men can feel especially alone,” Phillip says, reflecting on the low points in his journey with HPE. “Families for HoPE started me in the right direction. We went from no hope at that point to reasons for hope.” Through the connections and support given his family, Phillip learned that there are so many variances with HPE kids. “Don’t let the dire prognosis steal your hope,” he says. “It is not hopeless.”
Phillip recalls the “darkest, scariest moment” of his life – Maddox’s emergency intubation. The family held onto hope and saw their son survive. “The second time Maddox was intubated was for safety,” says Phillip. Again, Maddox survived. Thankfully, doctors had learned that taking a pro-active approach produced hoped for, life-saving results.
Today, Maddox is a ‘tween-ager’ who will transition to a full-fledged teen in April when he turns 14 years-old. He is successfully co-parented by Phillip and Maddox’s mom who lives nearby in their small town of Union City, IN adjacent to Richmond and Muncie, IN. Phillip describes his son’s personality as “bright.” “He’s always smiling,” Phillip says, even though he has his less than positive moments just like any other adolescent. Though non-verbal, Maddox is very much aware of his environment and everyone in it, his dad says.
On his family’s journey with HPE, Phillip has learned other key lessons. “Mental health is so important, especially during the winter months,” he says, underscoring the importance of good self-care. Through his spiritual life encompassing prayer and God, Phillip gains strength. Running, music, drumming all contributes to Phillip’s self-care routine. “I love hiking, camping and the outdoors,” he says. “Music is something Maddox and I enjoy together, and I have learned to keep rested, I nap and sleep when he sleeps.” Of course, Phillip gives credit to having family and friends nearby, in addition to the help of a home nurse.
While Phillip has been an active member of Families for HoPE’s dads’ group and attended the group’s outings in Tennessee and Arizona in the past, he relishes and welcomes the opportunity for dads to get together regularly on virtual platforms like Zoom or Teams. He also welcomes in-person coffee chats and meet-ups for dads who live close to one another. “It’s so good to just connect to laugh and joke on social media, Zoom or in-person from time to time,” he says. “Families connecting and holding the hope for one another makes us all stronger.”
Please consider a donation to Families for HoPE today to ensure that Phillip and other parents raising a child with HPE will find the support they seek.
Posted: March 27, 2024 by lyndot71
Celebrating HPE Awareness Week, Sharing Our Families’ Stories
Gracefully Grieving with HoPE
Written By Stacy Jeanes
Grace Inez Jeanes, our precious miracle, the love of our life, was born on earth May 14, 2014, and born into heaven on March 27, 2021. Grace Inez was diagnosed with Semi-lobar Holoprosencephaly, Diabetes Insipidus, and Adrenal Insufficiency shortly after her birth. We knew from the beginning that Grace’s diagnosis did not define her. We did not put any limitations on her. We believed Grace Inez was exactly who God intended her to be. She was perfect in our eyes. We never asked why us or why Grace. I resigned from my job as an elementary school teacher to care for Grace. Our goal was to give her the best life possible. We decided to face her conditions head on. We hit the ground running. We began coordinating her care and never looked back. We became hands on experts in Grace Inez.
We were told that Grace Inez would most likely not live to see her first birthday. The first year of Grace’s life, I felt like I was holding my breath. As she experienced all of her firsts, I was mentally checking the boxes on a list I didn’t even realize I had. It was exciting to see her experience the 4th of July, Halloween, Thanksgiving, Christmas, Valentine’s Day, St. Patrick’s Day, Easter, and finally her first birthday. In case you are wondering, yes, she had an outfit and big bow for each of those celebrations. I let out a huge sigh of relief when she turned one. After her birthday, we found out that Grace was the only one that carried the gene mutation for Holoprosencephaly in our family. That meant her condition was not caused by us. I was finally able to relax after we received those tests results. It confirmed our belief that God made Grace Inez in his image.
Grace lived a happy life. In many ways, she was a normal kid. She loved playing with friends and her cousins. Her favorite color was orange. She loved applesauce, pears, chocolate pudding, buttercream icing, dum dums, and candy canes. Her favorite drink was a Java Chip Frappuccino from Starbucks. She loved listening to praise and worship music as well as Bruno Mars. Her favorite Bruno Mars song was Marry Me. Her favorite book was Ten in the Bed. Her beautiful pink bedroom was her favorite place to spend time. She would get so excited laughing, smiling, and talking each time we brought her home from long a hospitalization. She loved being back home and sleeping in her own bed. Despite being legally blind, she loved to watch tv. She enjoyed watching Caillou, Super Why, Color Crew, Harry the Bunny, and Kidsongs. She would work hard in school or therapy just so she could earn tv time. Her favorite show was Caillou. We called him her bald-headed boyfriend. She would do absolutely anything to watch Caillou. Believe it or not, I actually miss Caillou.
Grace achieved so much in her short life. She was an incredibly hard worker. She could follow simple commands. She could say a handful of words and phrases. She used eye gaze to make choices. She pushed buttons to activate toys and her laptop. She communicated using her voice, wiggling her eyebrows, and wrinkling her nose. These accomplishments did not come easily. But she faced every challenge with strength, grit, and determination.
In 2019, Grace went septic and almost died. She was in the hospital for 3 months. This infection ravaged her little body. She suffered organ and brain damage. One problem would resolve, and another crisis would appear. Her medical team was convinced that she would not survive. But God used Grace Inez to show them the power of prayer. Grace had an army of prayer warriors praying for her recovery. Slowly each organ was healed and began functioning normally. The damage her brain received was in an area of her brain that was already compromised from HPE. When she was discharged from the hospital, she was very weak and frail. This infection had taken a huge toll on her. Grace was never quite the same after sepsis. However, she clawed her way back from the brink of death. Once she was home, she began working to regain the muscle and motor skills she had lost. She also had to find her sweet voice again. We saw the horrific side effects of sepsis on a daily basis. But Grace faced these hurdles with such dignity. She worked and worked to regain her strength. I have never seen anything like it. Grace’s resilience is such an inspiration to everyone around her. We had two more amazing years with her after sepsis. God was not finished with Grace Inez’s story. He spared her life so she could share his joy.
The night before Grace Inez passed away, she looked at me so intensely. She had never looked at me like that before. She locked eyes with me and just stared at me deeply. It was almost like she was staring directly into my soul. She was full of smiles. She was laughing and talking. I took pictures and we laughed together because she was being so silly. I’m so thankful I had those special moments with her. I think she knew she was on her way to heaven. I believe God gave me those beautiful memories as a source of comfort. Once Grace passed away, I immediately started getting signs from her. I call them Grace winks. These winks are coincidences that you just can’t explain away. They generally come in the form of a cardinal sighting and heart shaped rocks or shells. They are obviously from Grace Inez. I’m so thankful God graciously shares those with me and others. Those Grace winks always come when I need them the most. Those winks have taught me to look for the beauty in the ashes of my grief. As we mourn Grace, we have found that music, gardening, and taking trips to the beach have played a huge part in our healing journey. We have a garden in our backyard called Grace’s Garden. We love sitting on the lanai and enjoying all the vibrant pink flowers that surround us.
The hardest thing I have ever done is leave the hospital without my sweet baby girl. I thought we would have more time with her. She was our whole world. Our life revolved around caring for her 24/7. My number one job was to keep her alive. Leaving her behind was excruciating. For months after she passed away, I had a physical pain in my chest. The silence without her was deafening. Her absence was surreal. I had to remind myself each morning that she was actually gone. It felt like when Grace was here, I saw everything in brilliant, bright, bold, and vivid colors. Then suddenly everything was in black and white. Her devastating loss changed my perspective and the way I viewed the world around me. Gradually, I have been able to see the colors again. Although they are dull and muted at times. It’s like the twinkle lights at Christmas. They just don’t twinkle as bright without her. Grace Inez made everything better.
It is difficult to feel like a parent when your only child is gone. I have struggled with what we are called without her. A child without parents is an orphan. If someone loses a spouse, they are called a widow/widower. But what are parents called that have lost a child? Are we just bereaved? I have slowly realized we are still parents. The most important title I will ever have is Mama. I now cling to that title. I can feel Grace’s love every day. My relationship with her is stronger than ever. It just looks a lot different than it did before. One way I can mother her is to honor her legacy. I have learned that my deep grief for Grace Inez is actually my love for her. I have intentionally chosen to embrace my grief. I embrace my grief as if I am embracing her.
When you lose a child, it becomes your mission to keep their memory alive. That mission is fueled by love. It is so important to me for Grace’s name to be said out loud. I say her name every single day. I know that Grace Inez is not only in my past, but she is also in my present, and I will carry her into my future. We know that she lives on through us. We are heartbroken that she is no longer with us. But we are not broken. We continue to fight for her each day. We keep moving forward for her. I know we are able to do this because she made us stronger. She prepared us for this. God used her to mold us into who we are supposed to be. Grace Inez showed us how to live a life of purpose. Our arms may be empty, but our hearts remain full.
I don’t believe it was a coincidence that Grace Inez passed away during Holoprosencephaly Awareness Week. March 27th, 2024, will be her third angelversary in heaven. Even from heaven, she continues to bring attention and awareness to HPE.
We recognized very early on that kids with HPE were incredibly special. Simply being in their presence immerses you in the goodness of God. God continually showered his favor on Grace. Her life had a divine purpose. That amazing life was a series of miracles orchestrated by Him. It is an honor and privilege to have been chosen to be her parents. We witnessed firsthand as God worked in Grace’s life. He used her story of perseverance to share his unconditional love and faithfulness to everyone she encountered. Everybody that came in contact with Grace Inez fell instantly in love with her. Through Grace Inez, he reminded us that he is always in control, he answers our prayers, and he is the giver of all miracles. Grace Inez was the most extraordinary gift that we have ever been given. God showed us the rare beauty in Holoprosencephaly. My prayer is that her story will encourage HPE families to look for their own blessings in Holoprosencephaly.
Grace Inez was my mini me, my sidekick, and my best friend. Grace was also a Daddy’s girl through and through. She absolutely adored her Daddy. He was wrapped around her chubby little finger from day one. One thing I miss more than anything is watching them interact. I miss the tone of her Daddy’s voice when he would speak to her. I also miss the way Grace would look at him with such love and devotion. She didn’t look at anybody the way she looked at her Daddy. She really was our little princess.
We treasure every moment we spent with her. We continue to thank God for her every single day. Grace Inez showed us that we can do hard things. Her setbacks became her triumphs. She inspired us to never give up. She taught us that there is always HoPE. She made a lasting impact just by simply being herself. Every breath she took, and every heartbeat mattered. She was the bravest person I have ever met. She truly is our hero. We will always share Grace Inez’s story as we honor her with random acts of kindness. Her big personality and sweet spirit continue to shine bright.
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