Thursday, April 29, 2021

It Took A Mask To Find My Voice

I have always been some version of quiet. Over the last few years with failing hearing and now having to wear a mask, I had to find some volume to be heard by others. 

Growing up, my Mom, a one-time music teacher, always encouraged me to speak from my chest and deeper in my throat. I never really understood what she meant, nor did I think it would work. I humored her and became a bit louder. 

Me Practicing To Be Loud

 Despite my disbelief, I did practice this beyond the car in places   like the tennis court with friends I was comfortable with, and later in the company of colleagues. A fellow colleague at work and I were even dubbed "loud and obnoxious." We always joked, "Are you 'loud' or 'obnoxious' today?" It wasn't the authentic me, though, just a role I was playing that I enjoyed more than my actual self. 

My Mom was on to something, but I would not know that until I took choir classes of my own in middle and high school. She was teaching me breath control, how to create sound from my diaphragm, chest, and throat. Head and nose voice were out. The power lived in my abdomen and chest. Upon further reflection, I realized each car ride to CVS and the video store was a masterclass in how to sing and project my voice. 

This training would come in handy in 2020 when we would all be wearing masks during the COVID-19 pandemic. Behind the mask I can relax a bit when it comes to my appearance. Men find me attractive, not knowing what lies behind the cloth covering my nose and mouth. I go from a 7.5 to a 10 with a simple swatch of cotton. Appearance is not everything, though. The new problem is being heard by others in all kinds of acoustic environments with your mouth covered by multiple layers of fabric and a filter. We are all muzzled! For instance, the grocery store deli counter, the scene of many questions about my repaired cleft lip over the years, continues to be riddled with minefields even with my facial difference covered. Trying to project my voice over the refrigerated charcuterie case is the newest insult to my already injured ego.

What do I do? 

How do I overcome this new hurdle? 

I got louder. Like, "Hockey Dad" loud. You know the type, a Dad (or Mom) in the stands that can be heard from across the ice rink. When you stand in closer proximity, the flesh of your face feels like it is blown back by hurricane-force winds. Well, with all that cloth in front of your face, this decibel level is necessary. I put everything I was formally and informally taught all those years ago into practice just with more "oomph." 

For the most part, this new tactic seems to be working. People are able to hear me, even if it means damaging their ear drums. 

After this is all over, I worry about being too loud, but I want all the love in my heart and the incredibly brilliant (and some not-so-brilliant) thoughts in my head to be heard. Now is the time to harness my inner lioness, to be authentically and unapologetically me. 

With or without a mask, my face is beautiful. 

With or without a mask, my voice holds words that must be shared and heard.

Wearing a mask allowed me to be my authentic self with everyone. It has been the great equalizer for many of us in the facial difference community, while also pushing us to dare to utter our truth, louder, with power, one syllable at a time. 

Double-masking! Thank you, Target!

Monday, April 26, 2021

Read Our New Siblings Support Overview

EDITOR'S NOTE: The sibling bond and experience is one that is very important to CCA and all its families. Without our brothers and sisters where would we be? Emily Holl, Director of the Sibling Support Project, a Kindering Program in Bellevue, Washington shares with CCA in this four-page overview a bit about what parents need to know to best support siblings of children with craniofacial conditions. There is great guidance, suggestions, and service providers in this helpful overview. We hope this helps!

A copy of this overview was published in our current E-Network. Please visit our E-Network webpage, and scroll to page 19 to read this thoughtful resource. To learn more about Emily Holl and her work with Sibling Support Project, go to their website or find them on Facebook, Instagram and Twitter.

Sunday, April 25, 2021

Ally's Act Hopes To Ease Cost And Access To Hearing Aids

Communication is essential for all parts of a flourishing life. Melissa Tumblin and her daughter, Ally, want to make that life possible for all children. Ally's Act will help families acquire hearing devices like BAHAs and Cochlear implants by "ensuring that private insurance companies provide coverage" from birth to adults age 65. 

The act began by Ally Tumblin, co-Founder of Ear Community, writing to Congressman Joe Neguse "asking him to help advocate for hearing better." And he listened to Ally! Congressman Neguse got to work and named the effort and subsequent act "Ally's Act."

Surgeries, appointments, and the osseointegrated hearing devices (OIDs) hearing devices themselves will be covered when the act becomes law. A list of the comprehensive support this act hopes to provide includes the following for constituents in every state:

1. Coverage for a BAHA or CI device.
2. Upgrade replacement of these hearing devices every 5 years.
3. Cover accessories including soft band headband, hard band, and adhesives.
4. Cover repairs for these devices.
5. Cover (1) hearing assessment per year.
6. Cover (1) preoperative assessment per year.
7. Cover implantation surgery.
8. Cover post-operative medical appointments.
9. Cover post-operative audiological appointments for fittings, programming and activation.
10.Provide aural services related to the use of this device.

A number of law makers across the country, all members of the National Hearing Caucus, support the bill that was introduced at the end of January 2021. You, your family, and your doctors can write letters, call your senators, and encourage others in these congressional bodies to support this act.

When asking for this legislation to pass, Ally's Act is not just attempting to help others in the craniofacial community, but are also assisting the over 4.6 million people in the United States that make use of OID hearing technology. 

The act has many major corporate sponsors including, Stryker, Oticon, Cochlear, and Med-El. Many physicians and hospitals have written letters of support to their local and national senators and congressman urging them to make this a priority on the U.S. docket. Four committees have been assigned the bill with the hope that is will get the attention it needs within the legislative process. 

The Ear Community's website has a wealth of knowledge on who and how you can share the news about this legislation. They have letter writing suggestions, talking points for phone calls, and example letters to help you craft your ask. For instance, the website suggests,

When writing to your local Congress and Senate Representatives:
Please write to both your local Congressman/Women and Senators in the district in which you live (the reps over your zip code) because what matters most is that you are their constituent. You can find out who your local Congress representative is at the following link here. You can find out who your local Senate representative is at the following link here

Ear Community, Melissa Tumblin, and the super star herself, Ally, were featured on their local news station. Watch this segment to meet these incredible women and the work they are doing to improve the lives of millions of people. 


Sunday, April 11, 2021

The Mighty Events and April Writing Prompts

EDITOR'S NOTE: Our friends at The Mighty have a full slate of events this month, as well as, writing prompts to help you process how you feeling and dealing during these difficult times. Many of their events look thought-provoking and meet this moment in time in which we find ourselves. The writing prompts will allow you to reflect on life in 2021 living with a disability or diagnosis. Please consider taking a leap into this community to help yourself and others grow stronger. Community support is so vital to living a resilient life. You can find more on their website at 


Attending a new event for the first time can bring up a lot of emotions and if you’re prone to anxiety, you may be fearful of not knowing anyone, not knowing what to do or what to expect. Below this week’s events I ask a question in our 
Virtual Events community about what feelings come up in you. 👇
Image Alt Text


Image Alt Text
Image Alt Text
Image Alt Text
Image Alt Text
Image Alt Text
📌Answer this prompt in the Virtual Events community about how you feel about attending new events.

As we expand events we want to make sure you feel safe and know what to expect and what (if anything) is expected of you, have events that are relevant to you, attend events based on when you actually have time to and are getting the best experience possible.

 1. For National Autism Acceptance Month, explore a topic related to autism you wish more people were talking about. As autism acceptance gets more attention (which is great!) what are some conversations you still don’t see happening? Use your story to shine light on this topic.

2. For National Minority Health Month, share an anecdote that illustrates how being part of a marginalized group affects your healthcare. From doctors making racist comments, to specific stigmas in your community that make it hard to get help, tell us a story that illustrates how being part of a marginalized group impacts the quality of care you receive.

3. What’s something related to your health condition you had to learn the “hard way”? When you start experiencing a health challenge, or as you navigate life with a disability, there’s no manual to make sure you’re on the right track. Share something you learned the “hard way,” and use your story to help others on a similar path.

4. What are some fears you have as COVID-19 restrictions are lifted? While vaccine distribution and lifted COVID-19 restrictions seem like great news, are there any fears you still have as someone with a mental illness, chronic illness or disability? Write a piece exploring them, and offer some advice for people who can relate.

5. Write a response to something timely. A new song. An interview with a celebrity. A comment from a politician. If something in the news cycle strikes a nerve or leaves you inspired, let us know why. Make sure to mark your piece as timely when you submit!