HI, I'M LEO'S MOM.
Leo is the sweetest almost-four-year-old you'll ever meet. He loves being outside, being on the go, and being loud. He is infatuated with airplanes, trains, school buses, and pretty much anything that can be turned on and off. He is curious about the world around him and celebrates its little moments, whether it be jumping off the couch to dance to a favorite song or laughing at a silly face. He adores sugar and his kisses are just as sweet. He feels with a depth unknown to many adults. His love—and his anger—are never ambiguous. He is magical and delightful.
Today, our family is preparing for pediatric surgery. Leo will undergo cochlear implant surgery on June 13. His perfect little body will be forever altered—but we have to believe— for the better. This is a time of immense hope, anxiety, and overwhelm for us. But certainly hope.
Road to Surgery
The day Leo was born, he was perfection. Tiny, with a full head of the softest black hair. He was also infected with congenital cytomegalovirus. When Leo was diagnosed with progressive hearing loss a few months later, the trajectory of our lives as we knew them profoundly changed.
The past four years have been an uphill battle to get Leo consistent access to hearing language, building language, and ultimately, building connections. His speech is severely delayed, and we’ve been using ASL to help him communicate. We've spent years investing our time in early intervention meetings, audiology appointments, sound booth tests, speech therapy appointments, IEP meetings, and DHH preschool.
The cochlear implant will give Leo the opportunity to hear more clearly and learn to speak more clearly, thereby completing his foundation for future success. Choosing surgery for your child is not an easy decision to make, but in Leo's case, we know he wants to hear and talk. So we know this is the right choice for him.
Living with Progressive Hearing Loss
With progressive loss, each change disrupts and delays progress. Just over a year ago, our family experienced the dark side of this process. At the time, Leo was only diagnosed with unilateral loss and wore one hearing aid. He descended into a disregulated state so intense and so long, we were all suffering from anxiety. He would rip out his aid and refuse to wear it.
I would try to talk directly into his ear but he was so unhinged, it didn't matter if he could hear me. He screamed all the time. He was violent, throwing everything he could get his hands on, pulling his sister's hair any chance he got, scratching at my face. There was no such thing as a family meal. There was no such thing as leaving the house to have fun.
Finally, we were able to get Leo a sedated hearing test. The information we learned was hard to swallow, but also made so much sense. Leo's hearing had changed drastically. No longer unilateral mild-moderate, our son's hearing had slipped away to bilateral moderate-severe and left us with the wreckage.
Decision to Operate
I often imagine Leo's experience of hearing loss to be like sitting in an empty room. Sound is the light outside in the hallway, and the door is slowly, but certainly, closing. Leo's hearing has continued to leave him, in unpredictable strokes. His thresholds are now severe-profound, and bad enough in his left ear that a hearing aid no longer serves him.
Which is why we've made the decision for Leo to undergo cochlear implant surgery. The alternative is to let him be Deaf. But right now, that's not an alternative we see working. Leo doesn't have a solid foundation of language. And we've seen what the frustration of not hearing and not being able to communicate does to him. So, Leo will be implanted on the left side, and for now, will continue to wear an aid on the right side.
After surgery, caring for Leo will be a challenge. He will have a couple days of pain and nausea. Then he can resume his normal light activities. But for three weeks, Leo will not be able to hear anything with his left ear. We anticipate this will be disorienting for him, and that he will likely reject his right hearing aid during this time.
When the device is turned on three weeks after surgery, Leo will have a digital ear with a blank program. Even newborn babies have gotten used to sounds in utero. But Leo's brain will not have ever communicated with this device before this moment. It will hear things for him that his brain won't know how to compute. His brain may begin adjusting quickly, but it can take up to a year for a device to be fully mapped—meaning his brain will have built a full collection of neurotransmitters to allow him immersive, natural sound. This involves many appointments, adjustments, rehabilitative therapy, and lots of work.
Where YOU Come In
Understandably, this is a lot to ask of a little kid. As his parents, we want to be focused on helping and supporting him (and his sister) as much as we can. Considering all there is to do with additional appointments, half days of school, and many unknowns... there is going to be a lot of disruption to our "normal." We know that in order to do this successfully as a family, we need help.
We need to outsource things like meals, housework, and yardwork for the weeks following surgery and activation. We anticipate needing cleaning services every couple of weeks, lawn care twice a week, and meal delivery options at least twice a week. Our hope is that this support will help to minimize the energy and focus given to things other than our kiddos during this time of tremendous change.
We have a couple of options set up for those who want to contribute. If you can help financially, you can donate to this GoFundMe campaign. You can also donate to us specifically through UberEats. Just use [email redacted] for the email to send to.
Or if you prefer to help in person, you can visit our CareCalendar to sign up for childcare or a task like lawn care, etc. to offset the need for funds. To log in as a helper use these codes:
Calendar ID: 282263
Security code: 5446
Lastly, please share this campaign with any connections you think would be interested in helping. We appreciate the emotional support so far from those who have been following Leo's journey. Thank you to all!
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