I recently sat down with two courageous mothers—Deborah and Marie—who both cared for medically fragile children from their birth, until their final breath. Our conversation was filled with tender memories, raw honesty, and the unique realities of parenting a child whose life is both beautiful and fragile, reflecting the journey of losing a disabled child.
A Celebration Worth Every Moment
Deborah shared the incredible story of her daughter Aria’s quinceañera—a 15th birthday celebration in Mexican culture that marks the transition from girlhood to womanhood. Planning began a year in advance, always with the understanding that Aria’s health could change quickly.
They constantly reminded her, “You don’t have to do this.” But Aria’s response was always clear: “Why wouldn’t I want to? This is for me.” She chose her own dress, touching and feeling the fabrics since she was legally blind, and relished every detail.
Despite getting sick the week before, Aria woke up on the day of her party feeling better than she had in weeks.
Deborah and her husband invited only those who had been a genuine part of Aria’s life—people who had made the intentional choice to be present around a child with disabilities. It became a beautiful, love-filled celebration.
A year later, Aria was gone. But that day remained a treasured memory of one last, grand moment to show her just how loved she was, a poignant reminder of losing a disabled child.
Maxx’s Everyday Joy
Marie described her son Maxx as the “boss of the house,” always smiling and laughing. He could wave, say a few words, and even invented his own sign for “mama.” a reminder of the deep love and challenges of losing a disabled child.
He loved Mickey Mouse, and if anyone blocked the TV during his show, he’d let them know he wasn’t happy. Meals often included his favorite—tomato soup with crackers, mashed up so they could share together.
Life with Maxx meant constant hospital visits and doctor’s appointments, but Marie accepted it: “As long as he’s alive, this is his life. I’m going to take care of him.”
When the Caregiving Ends
I asked a question many caregivers are afraid to voice; when their child passes, do they feel any relief? And if so, do they feel guilty about it?
For Deborah, the relief wasn’t from the work of caregiving, but from knowing Aria was no longer suffering. In her last days, Deborah felt Aria may have been holding on for her and her husband. “We told her, ‘It’s okay. Mom and dad will be fine. If it’s time to go, go.’”
The harder guilt came later, when the ache of missing her made Deborah wish she could have her back, even if it meant she’d still be sick.
Marie’s experience was different—there was no relief. Caring for Maxx had been her normal for nine years. But she has wrestled deeply with anger at God for taking him, a feeling that has softened but never fully left.
Faith in the Aftermath
After Aria’s death, Deborah found herself in a spiritual fog. A lifelong Christian, she struggled to hear God’s voice the way she used to. “Everything is different now, even our relationship with the Lord.”
Marie admits her relationship with God has been strained. Early on, she told me plainly, “I hate God for taking my son.” Over time, she says that anger has moved to the back of her mind, but it hasn’t disappeared.
Words for Other Parents
Both women stressed one thing above all: take care of yourself.
Marie ignored her own health after Maxx’s death and ended up in the hospital with “brokenhearted syndrome” just a month later. Her advice: “You put your child first for so many years—put you first for once.” Counseling, she says, was essential.
Deborah echoed that sentiment. Neglecting her health during Aria’s life caught up to her quickly after her passing, leading to serious medical issues. She also reminded parents to acknowledge all the losses—your child, your identity, your purpose, and even the medical and educational communities you were part of.
A Shared Journey
As we wrapped up, I thanked Deborah and Marie for being willing to speak with such honesty about the joy, the anger, the grief, and the enduring love for their children.
Some parts of their stories were the same, others were very different—but that’s the truth of grief. No two journeys look alike. And yet, by sharing Aria and
Maxx with us, they remind every grieving parent that they are not alone in losing a disabled child.
NOTE: This was partially taken from the Grieving Parents Sharing Hope podcast episode 309. Click here to listen to the full discussion, or look for the Grieving Parents Sharing Hope podcast on your favorite listening app.
Don’t forget to take a look at our “Pareavor with Hope” shirts and hats, featuring a heart that’s been broken and put back together. It’s more than just apparel—it’s a sacred reminder: we are pareavors, and we carry our grief with hope. Visit gpshope.org/store to see the full line.
If you would like to join thousands of other bereaved parents receiving a weekly word of hope delivered to your inbox, let us know below.
AWARD WINNING AUTHOR, LAURA DIEHL, has written several impactful books that provide comfort and guidance to those navigating the painful journey of child loss, after the death of her own daughter in 2011. Her most acclaimed work, When Tragedy Strikes: Rebuilding Your Life with Hope and Healing After the Death of Your Child, has received multiple accolades, including the 2017 Gold Medal Centauri Christian Book Award for Non-Fiction and a Silver Medal in the 2018 Illumination Awards. Several of her other books have won awards as well.
In addition to her writing, Laura is an ordained minister and has an extensive background in international children’s ministry. She is a sought-after speaker and singer at grief conferences and churches, known for her compassionate approach and deep understanding of the grieving process, especially the unique loss of a child. Through her weekly award-winning podcast, her writings, and other resources provided by GPS Hope, Laura and her husband, Dave, continue to provide hope and healing to thousands of parents worldwide, helping them find light in the midst of profound loss and darkness.
For more information about Laura’s award-winning books go to gpshope.org/books.
To find out more about Laura Diehl and the ministry of Grieving Parents Sharing Hope (GPS Hope) visit gpshope.org.
The link to Hope for the Future is an affiliate link, allowing part of the purchase price to go to GPS Hope.
Deborah is the mother of Aria Magdalena whom she lost at age fifteen in 2019, due to respiratory complications related to life-long multiple medical fragilities and complexities. Deborah worked in customer service prior to Aria’s birth and stayed home to raise and care for Aria after her premature birth at 25 weeks. As she learned to navigate healthcare and social program systems to better Aria’s quantity and quality of life, Deborah developed a passion for advocating for the rights of people living with disabilities, including formal training in policy making and working with policy makers in this area of need in Texas.
Marie Jackson is a dedicated Montessori school teacher who has also balanced multiple part-time jobs over the years. She is the proud mother of three children-two daughters and her son, Maxx, who was born on Christmas Day, 2006. Maxx faced significant medical challenges from birth and was completely dependent on Marie’s care. On May 27, 2016, at just nine years old, Maxx passed away unexpectedly in his sleep due to a massive brain hemorrhage. Marie found comfort in knowing that Maxx saved three lives through the donation of his liver and both kidneys. 
To have Laura come and minister at your event, contact us at office@gpshope.org.
Last week, I shared about being angry with God for not saving our child from death, and I ended by talking about the difference between a 
