Families with Disabilities Experience God’s Love at Family Retreat
Jennifer can recount the story like it was yesterday: how her eight-year-old daughter Tana went from healthy to fighting for her life…
Tana was born in August of 2000 and progressed at typical, even advanced, levels until 2008. Just as she had finished 3rd grade and was ready to enjoy a day at the beach, Tana’s life and her family’s world turned upside down when Tana contracted an aggressive, rare form of mono that attacked her liver.
Rushed into an emergency liver transplant, followed by a bone marrow transplant, Tana struggled at the edge between life and death. She fell into a coma.
Tana was never expected to wake up…
While doctors told Jennifer that her daughter would never emerge from her coma, Tana did in fact wake up. And for many years she thrived, bringing light and love to her family and everyone around her. As Jennifer says:
“She can warm the hardest of hearts; and make the non-believer, believe.”
Jennifer sees her daughter’s journey through the lens of her deep faith.
Still, Tana’s family faces many challenges as they navigate her complex and intensifying health issues. Because Tana has nocturnal seizures, Jennifer gets broken sleep at best. And on a deeper level, Jennifer wrestles with a pervasive burden of guilt, feeling like she can’t adequately meet her daughter’s needs or spend quality time with her husband. Most painful of all, as Jennifer says:
“…Then there’s mourning a life that my child will never have. And probably worst of all is watching her day in and day out with challenges and hardships that I can’t help her with or take away from her.”
Jennifer also shares how her faith has been challenged—and also strengthened—through Tana. She shares:
“I did get stuck in a phase where I questioned it all. Then, like a bolt of lightning, it hit me one day as Tana was getting off the bus… We were working on letting her independently get off the bus and walk (she always ran) to the front door. I was standing in the doorway waiting for her.
When she got off the bus she bent over and picked a big puffy yellow dandelion. When she stood up, she ran to the house screaming, ‘A flower for my momma, a flower for my momma!’
In that moment I was SO overcome with emotion… you see, society tells us that dandelions are invasive weeds. But my baby thinks a dandelion is the most precious flower on earth. I heard a distinct voice saying, ‘She sees a precious flower when most see a weed.’”
In late 2018 Tana started to decline.
Diagnosed with a rare form of epilepsy, which is deteriorating her brain, Tana has significantly declined. Viewing Tana’s life as quality versus quantity, Jennifer and her husband have taken her on adventures whenever possible, praising God that he has spared her infectious giggle and smile.
Still, Jennifer has gotten emotional at times over the years as she and Tana would sit on the sidelines and watch the other kids. But at Family Retreat, the emotion welling up in Jennifer changed… from poignant longing to joy:
“I watched Tana look around and as she saw so many other ‘kids’ just like her she seemed to have different emotions… It was a place where others waited for her and helped her participate. There were no kids trampling on her to get to the front. She didn’t get told to use her whisper because she was loud, and we didn’t get gawked at because of her habitual teeth grinding.”
– Jennifer
When asked about their favorite part of Family Retreat, Tana’s family answered, “EVERYTHING!”
From the drive-through welcome to all the inclusion to not being judged, Jennifer found solace in the whole week. And her family discovered that Family Retreat is a place where God removes sidelines and shushing, shows beautiful flowers a sense of belonging, and turns complete strangers into trusted friends.
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