Podcast
Held In The Hard 
(Lillys' Project)

How the dream was born

My daughter, Lilly, was born in 2005 with a rare chromosomal abnormality, resulting in multiple diagnoses including autism, epilepsy, hypotonia, and developmental and intellectual disabilities. She is nonverbal. At birth, she was the happiest baby, and we had no idea she would face these challenges. Around six months of age, it became clear she was not developing like her older brother. After many tests, we learned she had a duplication on her second chromosome. At the time, doctors had very little information to offer about her life or future. We were told, “She will make her own way,” a phrase that was both terrifying and freeing, placing no limits on our dreams for her. Lilly experienced significant delays in all milestones and did not crawl or walk until she was five. Her first seizure also occurred at five, and our journey to manage epilepsy continues.

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Early in my daughter’s life, I realized I needed two things: Christ and community. God faithfully placed people in my life at just the right time—parents who understood the daily realities of therapies, appointments, phone calls, and pharmacy runs. Moms whose children were further along in the journey, gave me perspective, hope, and the reminder that this season would not always look the same.

 

Parenting a child with complex medical needs brings extreme highs and deep lows—joy, fear, exhaustion, and grief, sometimes all in a single day. I had never prayed more or needed community more than I did then. I needed people who understood not just the logistics, but the thoughts, emotions, and weight that come with this life.

 

Held in the Hard exists to be that community. This podcast creates space for honest conversations with moms, dads, and those who support caregivers. We’ll talk about the victories, but also the hard emotions and unspoken struggles. Families can search by topic, listen when they need it most, or share episodes with loved ones when words are hard to find.

 

While many organizations offer encouragement—and that matters—we want to go deeper. We want to be real. And above all, we want to point you to Christ.

 

My prayer is that you find comfort, understanding, and community here—and that you are reminded you are not alone.

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In Love,

Tara Whitman

Mother of Lilly, Physical Therapy Assistant, & Director on the Board of Janely's Hope