In honor of the amazing connections that happen at Ear Community’s Microtia and Atresia Summer Picnics, we’ve asked attendees to share their experiences with you here on our blog. This week, you’ll hear from Shannon Katuszonek, a mom who is forever grateful for finding her strength through Ear Community.

Here’s Shannon to tell her story.

We had no idea my daughter, Ava, had a condition. When she was born it was quite the shock. As if learning to understand what her little ear meant wasn’t enough, she was our first child, so we had little frame of reference for newborns in general.

So, we took in whatever information the doctors gave us. We knew she failed the newborn hearing screening test. Then, our Microtia Pediatrician started telling us about the other things that could be wrong with her.  “She could have Goldenhar Syndrome, a heart condition and more. But, we’ll just wait and see how she develops.”

There we were…

You’re looking at this beautiful little baby that you’ve been waiting for, and now you’re so overwhelmed. You can’t enjoy the moment, because you’re so worried about all of the things that might happen.

Immediately, I had postpartum depression. Whether I would have had it or not, Ava’s obscure condition compounded it. I didn’t leave my house for three weeks.

I looked online for help, for someone who might understand what we were going though. I remember looking up Goldenhar Syndrome since that’s what was written on her paperwork. That was the worst thing I could do during that time, because I caused a lot of my own stress with Google.

Worried and looking for answers, I started digging deeper. Finally, I found Melissa Tumblin and Ear Community through the Microtia Atresia support group. Melissa became the light at the end of the tunnel—she gave us something hopeful to look forward to.

Ally, Melissa’s daughter, and Ava are only a year apart. So now I had the opportunity to really understand what I was in for. She helped me determine what questions I needed to ask doctors, ENTs and audiologists—and when to question their direction.

Our ENT said that Ava didn’t need a hearing device because she had hearing in one ear. While going unaided is fine, I wanted to know our options. I went through Melissa’s research and decided to push our ENT to help us get a Bone Anchored Hearing System (BAHS) even though he found it unnecessary. We decided that was the path for us. Ava has now been aided since she was 5 months old.

The emotional support that Melissa gave me was incredible — we cried together, dealt with it together. We found research to help teach Ava sign language and started teaching her at 6 months. Dealing with the social aspect can cause a lot of anxiety. Melissa was immensely helpful in getting through that stage.

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I was introduced to other children first through video and then at the picnic in person. 

It was amazing and encouraging to meet these other children who were thriving. That’s what enabled me to enjoy my infant— and that was priceless. 

Another unexpected turn…

Then, when Ava was a year old, I lost my husband, Paul, in a car accident. One of the things we were able to do together as a family before that time was attend our first Ear Community picnic. Melissa and the Ear Community family got to meet Paul, and we all got to talk and be together. They’ve become a part of my world—then and now.

This year, Ava and I attended our second picnic in Los Angeles. I got to compile even more information and learn more in-depth about our options. And, of course, it was wonderful to have all of the other families there—new friends and all. Even more exciting, Ava was two so she really got to take in the experience. She went up and looked at the other kids’ BAHS and was in awe. “Mommy, look that little girl has two BAHS!” It was very cool to see her relate with other kids in that way. Because of our Ear Community family, Ava always knows that she’s not alone.

During the picnic we got to talk openly and say to one another “We went through this…”  Those are some of the most comforting words a parent can hear. We dive into the things that other parents don’t normally discuss. Everyone is open, and everyone respects everyone else’s decision. It’s all about support and learning our options and being able to say, “I know exactly what you’re going through.”

I will go every year.

This year, I had to give back more than just donating, so I covered the picnic so that Ear Community could keep their funding. I’m just trying to give back in anyway I can. I don’t think Melissa truly understands what she’s done for me. If I can help one family worry less and enjoy their child more as she’s done for me, that’s an accomplishment.

My advice for worrying parents: Take things in stride. Don’t just focus on the things that might happen. Get to know parents who have been through or are going through the same.

I’ve made great friends through Ear Community and paying it forward has been the best thing. Melissa has truly inspired me.

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