Category: Conductive hearing loss

Meeting Your Tribe

Couple weeks ago was the Annual Say What Club Convention.  This yes is an annual event but it is my first time attending.  I should back up, The Say What Club is an online group where everyone has a hearing loss or their life is affected by hearing loss by a spouse or a close family member.  I have been a member for 6 years maybe?

A couple years ago there was an email to try and pitch and sell us your city and we will hold the 2018 convention there.  I wrote a proposal for St Paul.  Now Benson is where I live now but we don’t have an airport, heck we don’t have a Wal-mart for 40 miles.  St Paul had everything we needed and it was right next door to my hometown so easy access to family (watching our kids).  This past year has been busy, stressful, exciting and a growing experience helping plan a convention for people coming from all over the USA.

Attending an event like this was really, really hard for me.  I knew a couple of these people in person.  A large amount of them I knew from Facebook and email.  That didn’t help the fact I have social anxiety and I thank God that Chad was willing to come with me.  Be my anchor, be the one that I could go back to if need be.  First meeting was a meeting where we assembled bags to give to each person and talk about the convention, loose ends and such.  It was great.  I left that meeting with a huge smile.  This is what we planned a year for.  This was my tribe.  They understand hearing loss because they live with it everyday.  It is amazing the ease of a meeting when some listen, some lip read, and combinations in between.  The next day we met and a group of us walked to Tin Whiskers.  It is a small brewery that was just a couple blocks from our hotel.  Chad and I have always enjoyed a brewery tour and have done many through our years together.  I am not a beer drinker but enjoy it.  It was a fun outing that was an easy way to meet some people, talk one on one with some people and meet some new people.

Wednesday night our welcome party. We had a theme as every good party should have, a speakeasy, a roaring 20’s, a Great Gatsby theme. It was fun. We had feathers in our hair, pearls, some had long gloves a few men donned a fedora. We had welcome prizes, MN themed food. We had cheese curds, deviled eggs, wild rice sliders. Something for everyone. It was a time to meet lots of people. A time to meet wonderful friends who you have felt you knew for years but meeting in person for the very first time.

After this welcome party I knew I was hooked. Everyone was just so nice. It really was like meeting long lost family. Thursday was a great day, they were all great days. A dynamic speaker, visiting with the vendors and putting our bids on the silent auction items. Our last workshop of the morning was visiting Starkey Labs and getting a tour. Once our bus got to the CORRECT hotel we were off. A little late but you just role with it. We had a great tour, a lunch we ate in the bus since our bus was late to start with and then a tour of St Paul.

Friday- what a fun day. We had great workshops from clear speech to an artist, which I found fascinating. To the last workshop of the morning and that was mine. My workshop was titled, “Designed to Stand Out” I talked a little about my idea showed some pictures of examples and then let creativity take over. I had been gathering supplies for near a year. I had jewels, washi tape, nail wraps and tube wraps. It was fun.

Friday afternoon was a St Paul Gangster Tour. I think this was a highlight for Chad. We toured all over St Paul and saw so many sights.

House was home to the famous Ma Barker and the Barker Gang

This is the South St Paul post office the Barker Gang held up for the cash that came for paydays.

John Dillinger lived here and had a shoot out with the FBI in the stairwell. I wonder if current residents know the story.

At Swede Hallow Hearing the story of the Hamm kidnapping.

We even passed where F Scott Fitzgerald lived and wrote his first novel.

It had been a very full day but we weren’t done. We went to the St Paul Saints game. My parents joined us and brought the kids. That was fun and special. To bad the weather had to interrupt.

Saturday was the end. We had a banquet and keynote speaker. There were lots of hugs and pictures taken. Greta joined us for this last event. I wish the night never ended.

If you read through this whole blog- bless you. I really just wanted to stress the importance of finding your tribe. Find people that can understand, they get it. I got back to my moms on Saturday night and I just cried. I couldn’t stop myself. I wish I could live around all these people all the time. Chad and I agree this was just a fun week, one we will never forget.

*I need to give a shout out to Andre Binns who took fabulous pictures throughout the convention. Many of them are featured in this blog.

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A Mother’s Worry

My son and his ears… these two things bring me worry and concern. My son has a fluctuating conductive loss and it is frustrating beyond belief. Henry is 9 years old and this has been ongoing since he was 2. So 7 years of doctors, ENT’s and our audiologist. My son loves going to the audiologist and he does about 3 plus times a year. 

Let me go way back. Henry didn’t talk when he was a toddler. He also didn’t babble. He was quiet and reserved. I started getting concerned he didn’t talk and the doctor jingled his keys and Henry turned so I was told, “He can hear but maybe speech therapy would be good”. Henry started speech therapy at 2.5. I still wasn’t convinced he could hear well but was told not to worry. I had tons of ear issues as a child and it turned into a moderate severe hearing loss so I was no dummy on this subject. I also happen to have a B.S. in Communicative Disorders so I have taken many audiology classes so pretty well versed. Finally a public nurse in our small town said to me, “your son can’t hear”. She referred us to an educational audiologist and sure enough a conductive loss. Tubes were put in and his tongue was also clipped at that time. Glue ear was discovered and his ears were cleaned out. His hearing did improve but it is this roller coaster we are riding. 

A few years ago we noticed Henry was saying what all the time. Took him back in and the cycle continued. His hearing has dropped to a moderate loss. This time T tubes were recommended. These are a long term tube that are surgically removed when done. They don’t fall out and can cause a lot of damage so we really had to weigh the pros and the cons. This worked well for about 3 years. 

Fast forward to a few weeks ago. Henry’s hearing has now dropped to a moderate loss again with the T tubes in. This loss is comparable to having foam earplugs in your ears all day. This was concerning and I could tell the audiologist was much more concerned this time and something had to be done and quickly. We saw the ENT and it was decided surgery would be done the following week. Henry had the old T tubes removed his middle ear scrapped out and new T tubes inserted. It was a simple and quick surgery. He was put under so there is still that risk of surgery. As simple as it is I have to admit I cried when he was taken back. Everything went well,and now we wait and heal. We will find out in a couple weeks if his hearing has improved and how much.


It is really hard for me to see my son go through this. I know there are much bigger trials in life but to him these are big. He comes home from school exhausted. Have you heard of listening fatigue? It is real and it is tough. Trying to hear and make since of conversation all day is taxing on the brain. He comes home crabby many days and I get the brunt of his frustrations. He loves school but it is hard and exhausting. 

Now if Henry was found with a sensorineural hearing loss he would be given hearing aids and we could learn to deal and go on from there but instead I feel we are on this hamster wheel that just never seems to end. I pray that his hearing improved with these new T tubes but if not I would love to go to the next step and address the issue and go on. 

I am a mother with hearing loss. I feel I can help him with these issues but I also know what it is like. I hate that he may have some of these feelings I have had. I have felt embarrassed, left out, not fitting in. I sure hope I can help him through these things. 

School conferences were last week and we heard he needs to learn to self advocate for himself with his hearing. That is so hard to learn but will try to teach him every step of the way. 

A mom can worry and there are always things that can worry you. This is just one thing that consumes my mind, but I am also consumed with pride for both of my children. They are kind, creative and loving. They are my heart. 

My Boy

This little boy is such a joy in my life.  He brings laughs, cuddles, and stress.  The past few weeks I have had my mind racing.  I have been quiet on here and I believe it could be because my mind is on overdrive thinking … Continue reading My Boy