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.
Share the HoPE in Holoprosecephaly
Celebrating HPE Awareness Week, Sharing Our Families’ Stories
Posted: March 27, 2024 by lyndot71
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.
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.
Share the HoPE in Holoprosecephaly
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Category: Child of HoPE, Grief, Holoprosencephaly Awareness Week, Inspiration Tags: #hpeawareness, 2024 HPE Awareness Week, families for hope, grace, grace inez, holoprosencephaly, HoPE