Our daughter Lena’s heart was the size of a walnut when she was put on circulatory arrest. At birth, she didn’t pink up. Instead, Lena turned purple. Cardiologists determined she had d-transposition of the great arteries. The heart defect prevented her body from receiving oxygenated blood. Lena was five days old when she had open heart surgery, and I’ve been a medical mom ever since.
The heart surgery was a success, but it paralyzed Lena’s vocal cords. Lena can talk and her voice continues to get stronger, but she can’t clear her throat. Along with my husband Mike and our older daughter Janie, I watch her constantly for any complications related to breathing and eating. If she has a cold, we’re especially vigilant.
While Lena was still in the Pediatric Intensive Care Unit, she failed her newborn hearing test. At her three month hearing test, she showed moderate to severe hearing loss on her left side and immediately began using a hearing aid. At her six month hearing test, Lena was completely deaf. When she turned one, she underwent cochlear implant surgeries. When my husband accepted a job as the Program Director at Steamboat Adaptive Recreational Sports just over a year ago, we moved from Iowa to Colorado. He believes in the transformative power of sports especially for people with disabilities, and our move reflects his values and priorities. It was scary to leave behind our strong network including family, friends, and providers, so we were grateful to find supportive services especially in such a remote area.
In October 2018, we enrolled in Horizons’ Early Intervention and Family Support programs. We want Lena to grow up to be a confident deaf woman who can safely navigate the deaf community and the hearing world. Cochlear implants are an extremely valuable tool, but they don’t cure deafness. And we wouldn’t want them to. Deafness doesn’t need a cure—it’s part of Lena’s identity.
Directional sound is hard for Lena. It’s hard for her to hear when she’s outdoors, in rooms that produce echoes, or in loud places like stores. Every week, we meet with Horizons’ speech therapist Kate Doyle and teacher for the deaf and hard of hearing Teri Kite. When we’re focusing on speech, we remove gestures and sign language so Lena relies on her ears and develops her hearing. Our whole family also meets with a sign language instructor once a week.
One big challenge we have is that Lena is a wanderer. While she wanders, the external portions of her cochlear implants can fall off and she might not notice. When this happens, she can’t hear my voice or the sound of external threats. We built a fence around our backyard and installed cameras for added security, but there’s always some risk (especially when we leave our house).
Another big challenge is that Janie has Type 1 Diabetes. Her blood sugar level needs constant monitoring. Providing appropriate medical supervision
means I can’t always keep Lena in my sight.
Horizons’ Family Support program covers a portion of the cost of assistive technology for Lena to meet milestones, communicate, and stay safe. Family Support helps us pay for travel, lodging, and copays on our quarterly trips to Denver to see Lena’s cardiologist and audiologist. This relieves some of the financial burden that we’ll be carrying for a long, long time.
I love my family just the way it is. Janie’s diabetes and Lena’s deafness are integral to who they are. Janie is a responsible advocate. Lena is curious and carefree. They’re typical kids who have difficult medical conditions. But these medical conditions can be isolating and extremely expensive.
My name is Joni Boone, and I’m asking you to donate to Horizons’ Little Points of Light Campaign. This campaign raises funds for Horizons’ Early
Intervention and Family Support programs. Early Intervention helps kids age birth to three meet developmental milestones. Family Support offers
education and resources for families like ours. These programs are helping Lena hear, speak, understand, and connect. They make progress possible.
Your contribution to Horizons’ Little Points of Light Campaign helps children overcome obstacles and thrive. Because the brain develops so rapidly in the first three years, Early Intervention is life changing. Please help change the life of a child — you can truly make a difference.
Sincerely,
Joni, Mike, Janie (8), and Lena (2)