Madeline Cheney: The Rare Life

Hello! I’m Madeline Cheney. I live in Salt Lake County, Utah with my husband Juston, 4-year-old daughter Wendy, and our 2-year-old son Kimball.

Madeline and Kimball

Kimball was born with a very rare genetic syndrome. It is a form of skeletal dysplasia. He has dwarfism (shorter limbs), low-muscle tone, cervical spine instability, no nasal bone (narrow airway), vision impairment, and is hard of hearing (he has bilateral mild-moderate sensorineural hearing and wears hearing aids).

When I was 20-weeks gestation, we found several of his abnormalities and were thrust into the medically-complex parenting world.

Although we were warned of the possibility of several of his birth defects, we were totally unaware that people with his syndrome are more likely to be D/HH. I’m still not sure if that was intentional or not.

I’ll never forget sitting with him and my husband during a meeting with Kimball’s various doctors and specialists in the NICU when he was two weeks old, and hearing the doctor mention in passing to another doctor that he “failed the hearing screening”.

I was in disbelief about what I had heard. We were in so over our head with all of his medical struggles that the idea of another diagnosis on top of that seemed impossible and even comical.

Sure enough, the audiologist in the NICU came and visited us and told us Kimball had been given an ABR because of his syndrome (skipping over the typical newborn screening). She taught us many things like the anatomy of the ear and all about audiograms.

We went home from the hospital that day totally defeated and grieving. When the weight we were bearing already was unbearable, we had another proverbial burden slammed on each of us and Kimball.

In the early days after he received his hearing aids at 3-months-old, we were given an advisor from the Parent Infant Program with the School for the Deaf who has become our dear friend. Initially, we struggled to put his hearing aids on him. He was wearing them for a cumulative 10-15 minutes a day. Since that day, putting his hearing aids on him immediately after he wakes up is automatic and joyful. He absolutely loves his hearing aids and the sounds he experiences because of them.  

Mom puts on Kimball’s hearing aids

In our journey with Kimball, we have learned to be very flexible and open to following his lead as far as communication means. We have felt that the best thing for him and our family is to focus on listening spoken language. When we supplemented that approach with isolated signs, he went from being extremely delayed in communication to testing ahead of his hearing peers of his age group! He is SO much happier now that he has greater means of communicating with those around him. Because of all the extra effort and therapy meetings we have done with the goal of giving him language, the victory is so much sweeter. He adores speaking, using signs, and meeting with his PIP advisor weekly. We couldn’t be happier with our current situation and how well he’s doing.

That being said, I have often felt judged as a mother and person when I explain that we aren’t currently using ASL with Kimball and are going the verbal route. The judgement is felt from both those in and out of the Deaf community. It’s extremely painful, but it has taught me the importance of encouraging and loving others, even when their decisions and life looks different than my own. Each family and child are so unique, and just because something worked well for us or someone we know, doesn’t mean it’s the one right answer for everyone. I hope to make the world a little more inclusive and loving place by being a positive example of being confident in our decisions as parents of Kimball in regard to the language we give him, and being supportive of other parents’ decisions. In my experience, we’re all just doing our best at giving our child what they need to thrive. Regardless of differing communication modes, when I see my fellow parents of D/HH, I see so much love and devotion for their child. That is a common denominator I can totally get behind. I look forward to spreading that love to all parents, regardless of their chosen form of communication for their child.

I shared a lot more details about our hearing journey with an audiologist on a podcast recently. The episode can be found here:

Madeline’s podcast: The Rare Life

In honor of my son’s recent 2nd birthday, I launched a podcast called The Rare Life all about having a child with rare medical conditions. In it, I share my journey and experiences regarding my son, and I interview other parents who also have children with rare medical conditions. I have found this to be profoundly meaningful. I have already learned so much from these stellar parents and their amazing children. If you’re interested in listening to The Rare Life, it can be found on all major podcasting apps (including Spotify), and on the website