This episode is not just for parents who have lost a child, but for anyone who questions how a severely disabled child can have a life worth living.
What you are about to listen to is raw and real. Two moms who had children with severe disabilities from premature births share their child’s story and their journey from birth through the death. The deep and fierce love they had, and still have, for their child is strongly evident, especially when discussing their child’s departure and how much they miss their child and the joy their child brought into their life and the life of others around them.
The advice they give to others at the end of their time with Laura is heartfelt and priceless.
Thank you, Deborah and Marie for being willing to open up to us, for being so vulnerable, (including how your child’s death affected your relationship with God), and for sharing the blessing of Aria and Maxx with us. We honor you both for how well you loved and served your child.
3:20 Deborah shares about Aria
11:43 Marie shares about Maxx
20:10 Deborah and Marie share some of the fun memories Maxx and Aria
28:10 Both moms answer Laura’s question if there was any relief at being a caregiver, and if so, did they feel guilty for feeling that way?
32:34 How did their child’s death affect their relationship with the Lord?
41:00 Marie and Deborah give final thoughts and words of wisdom to anyone who has lost a child, especially those who have been a full-time caregiver of that child for any length of time.
53:58 Marie and Deborah share about their experience at a GPS Hope & Healing Retreat
1:01:20 Laura’s final thoughts
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.
Deborah works full time as a high school special education support facilitation aide in a Houston area school district near her home she shares with her husband, Salvador, and dog named Lenore. When not at work Deborah enjoys reading books, serving at her home church and the local orphan care ministry Kingdom Care as well as spending quality time with family and friends
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.
Marie lives in Janesville, Wisconsin, with her two daughters and their black cat, Isis. She has been a faithful member of the local GPS Hope Share & Care group for nearly nine years. In her free time, she enjoys scrapbooking and spending time with family and friends.
Note: Today’s podcast episode is sponsored by Chris and ReNae Trebelhorn, in loving memory of their son, Aaron Treblehorn.
Links Mentioned in this episode:
GPS Hope & Healing Retreat (Oct in New York)
Join us for a weekend getaway with others who truly understand the pain of child loss. Find healing, laughter, connection, and encouragement for both grieving moms and dads.
Details and registration: gpshope.org/retreat
Want to host a retreat in your area? Email us at [email protected]
If October in New York doesn't work for you, check out The Grief Cruise and Renew and Remember 2 night pre-cruise retreat, happening in February 2026 here.
Sponsor a podcast in loving memory of your child
You get to pick the week, and Laura will read your loving tribute for your child, so the listeners can know your son or daughter. Click here to sign up to sponsor an episode.
Birthdays:
We lovingly remember and celebrate the lives of:
Christopher Hotch was born on August 10 and left us at age 31.
Aaron Trebelhorn was born on August 16 and left us at age 21.
If you would like your child mentioned on the podcast the week of his or her birthday, click here to fill out the short form with the needed information.
The special song written for our children's birthdays I Remember Well can be heard here.
Remember to Hold On Pain Eases; there is HOPE!
To have Laura come and minister at your event, contact us at [email protected].
Grieving Parents Sharing Hope (GPS Hope) is here to walk with parents through the darkness of child-loss, guiding them to a place of hope, light and purpose.
It is a safe place for anyone who has lost a child from this earth. There is no shame or judgment in where you are in this journey, including if you are struggling in your relationship with God or your faith has been completely shattered.
The post 309: Losing a Disabled Child: Finding Hope After a Lifetime of Care appeared first on GPS Hope.
