In this episode:
Valli and her husband were in a state of shock upon learning their newborn son, Battle, was born with a genetic mutation that resulted in severe hearing loss. Valli stuffed her anxiety and didn’t share her fears with anyone. She felt alone, ashamed, and that she was not allowed to have these feelings. Embarrassed that she felt so sad about Battle’s diagnosis. She wished her healthcare team could have acknowledged how difficult it was to receive the diagnosis, reassure her that Battle would thrive, and connect her with a support group.
Valli grieved the mainstream motherhood experience that she had envisioned. Despite their best intentions, friends and family repeated “He will be fine”, a phrase that minimized Valli’s grief. More helpful would have been hearing,
“This must be really hard. We will stick by your side and support you.”
It is important to feel your grief and move through it – on your own timeline.
Valli recommends that parents of children with hearing loss surround themselves with a trusted, supportive team that is united in purpose and vision and seek reputable experts and resources. Parents should trust their instinct and intuition as they know their child the best.
When four months pregnant with her daughter, Harper, Valli had in utero genetic testing performed. Valli knew her baby had a 1:4 chance of hearing. Valli focused on that 25%. Upon hearing that Harper would be born with hearing loss, Valli felt complete disbelief, surprise, and sadness. She grappled with knowing how challenging it was going to be to navigate the medical appointments, surgeries, and caring for two children with hearing loss.
Battle and Harper are hard-working teenagers who are resilient, adaptable, and thriving. They need to work harder than their hearing peers to learn, to socialize, to play sports. They have not grown out of hearing loss, they have adapted to it.
Valli’s strength came from praying, surrendering, serving others, and finding purpose. Believing that there was a bigger plan and seeking the blessing. Writing about her children and their shared journey through hearing loss has become her mission. Valli’s inspiration came from within; from her desire to create a joyful home.
One of the biggest blessings that has come from Valli’s journey is her gift in speaking to, guiding, and inspiring others. Valli’s greatest hope is that her children be joyful, discover and leverage their talents, and serve others.
Harper, now thirteen years old, is a first-time author. She and Valli co-wrote Now Hear This – Harper Soars with her Magic Ears, a book describing her experience living with hearing loss. The book is based on Harper’s fourth grade journal entry “What makes you unique?” Writing a book together was fun and yet challenging.
After working on the book for years, it felt weird and surreal holding the published book in her hands for the first time.
“Wow! We actually finished it!”
Throughout this process, Harper learned patience and collaboration. Writing a book was not easily and involved numerous steps. Valli is encouraging Harper to write her next book.
Harper would want children with hearing loss to know that they can excel in school and sports; though they will have to adapt, their hearing loss will not prevent participation in daily activities. Harper would want hearing teens to know that her hearing loss has not stopped her.
Harper feels that her hearing loss allows her to be more understanding of people and the challenges that they may be facing, to be less judgmental. Harper has become somewhat of a celebrity amongst children with hearing loss; they look up to and want to be just like Harper.
Resources
My Battle Call Valli’s blog
Now Hear This – Harper Soars with her Magic Ears
Thank you for listening!
May our stories help forge your path forward. I hope you’ll stay tuned for our next episode and in the meantime, learn more about my story on my blog.
