24 Jason Tuttle: Grieving as a Father & Caregiver to a Medically-Fragile Child

Jason is a former PE teacher and loving husband and father. Soon after they got married, he and his wife were excited to start their family, and even talked about having a large brood.

After they got pregnant with their first child, Zachary, their initial excitement turned to concern. Through an ultrasound, they learned that their son would suffer from a rare condition called Eagle-Barrett Syndrome, only seen in 1 out of every 40,000 births.

When Zach was born and as he grew, Jason became his adept caregiver and spent the majority of his time managing Zach’s extremely medically complicated life. At one point, he was trained on multiple machines to help Zach with his respiratory challenges alone. In addition to the Eagle-Barrett Syndrome and lung issues, Zach had epilepsy and was also non-verbal.

A few years later their daughter was born, with as many medical challenges as Zach, except for the rare Eagle-Barrett Syndrome. Jason’s experience having two medically-fragile children has led to a life of learning and joy, including an adventure with starting a GoFundMe to acquire an expensive wheelchair-accessible van.

Even with all the hospital stays, surgeries, medical specialists and utter exhaustion from being a caregiver… Jason describes Zach as “laid back, and nothing ever bothered him” kind of kid, despite all of his complex medical issues.

When Zachary passed suddenly at age 15, Jason and his wife had to navigate their “new normal”of having lost a child. In search of support and a way to channel his grief, Jason started researching different influencers and groups looking for answers.

Eventually, he started the “Letters to Zachary” facebook page, where he shares his grief journey as he processes the profound loss of his precious son. He hopes his page helps other parents who’ve lost a child, and fathers in particular, to know they are not alone.

Resources

Suicide Hotline: 1(800) 273-8255 or text 988
Hospice & Community Care: (717) 735-9661
Cope Foundation: https://copefoundation.org/grief-resources/
A Walk With Faith: Surviving the Death of a Child: https://faiths.me/awalkwithfaith

Connect With Jason and Faith

Jason Tuttle:

FB Page: Letters to Zachary

Faith Sage:

FB Page: https://www.facebook.com/faith.sage
Website: www.faithsage.net
The Healing Huddle: www.healinghuddle.com