Holden will be 14 on August 24th! Man the years have flown by!
Holden will tell anyone that his ears are broken. We laugh about it because it’s such a boy way of describing something. From the moment he was born his ears caused problems. He failed his newborn screening but we were told over and over that it was just fluid. It was always fluid or an infection. By the time he was a few months old he had his first set of tubes. As Holden grew his speech was delayed and he had a speech impediment. We started speech therapy before he was in Kindergarten and continued until he was in 2nd grade. We were told his delay was probably because he had autism. He doesn’t. Then we were told it’s because he has older siblings who talk for him, then he didn’t want to talk followed by every excuse. As the years went on Holden was tested for Special Education. He qualified for extra help in several areas. We worked hard! We are still working hard to get him caught up.
Holden’s entire life he still has ear infections. One after another. Last year 2019 he had his 6th set of tubes put in. The tubes help a bit but they don’t fix it like they do for some children.
We started with a new ENT when Holden was in 2nd grade. He was the first one to tell us there was something wrong. He found that Holden had a Cholesteatoma in one of his ears. A Cholesteatoma is a growth that develops from skin cells and infections. This was Holden’s first big ear surgery. The doctor was able to remove the tumor and leave the ear intact. These benign tumors have a huge possibility of growing back. One year later it was found again. Again Holden heads into surgery to have it removed.
The doctor was still hopeful that Holden’s ears would heal and he would regain the hearing loss he had due to tubes and surgeries. We all hoped but really my Mom gut told me otherwise. I knew something wasn’t right. We tested his hearing every month that year. It was finally discussed that a hearing aid may benefit Holden just in his left ear which is the ear he had the surgeries on. So we tried it. It was emotional! We knew it would help. He knew it would help which was the most important. He was on board from day one. He watched the audiologist who showed him how to put it in and take it out, how to care for it and change the battery. I never one time had to help him. He didn’t care what kids said. He wanted and needed the extra help. At school it made a huge difference. He was finally hearing things that he had been missing for so many years.
As his ears continued to change things did get worse. It was suggested that he move to double hearing aids a few years later, so we did. He wore those successfully for about a year and we come to Holden’s story now. Holden was at a point where his ear infections were creating a problem wearing traditional hearing aids. He needed to have his ear canals open. So the discussion of an implant was started. Because his conductive hearing was better and the hearing aids weren’t giving him enough Holden made the decision to move forward with BAHA implants. It was a tough decision. At 13 years old how in the world can a child show so much maturity and wisdom?? We watched him go through the entire grieving process. He listened to the audiologist, we researched in hopes of finding a teenager who received the implants around his age, there is nothing out there for teens, we talked a lot, we cried, he got angry, angry that his body wasn’t working how it should, angry that now there was no hiding his hearing loss, angry that this is his life now.
We gave him time to make his decision. We let him know that this was his choice. He had to be the one to go through the surgery and the lifetime of wearing implants.
Surgery was scheduled! Holden had his bilateral BAHA surgery in December of 2019. In March he was able to have them activated. What an amazing day. He was fascinated by the sounds he couldn’t hear before. We were shocked that he could hear us from his room. He’s a teenager so he loves technology and his favorite is being able to stream directly to his BAHA’s.
Since December it’s been a tough road. His body won’t heal. He has undergone skin removal surgery, steroid shots, cauterizing and antibiotics. He still loves his BAHA’s. He will most likely have to undergo another surgery to change to a new system in the next year. One more hurdle.
Over the years I have watched my son have to grow up and make life long lasting decisions that some adults would struggle with. He has had 13 surgeries in his 13 years from ears, both feet being repaired and eye surgery. Every surgery he is a rock star.
I have watched Holden walk through life with grace and courage. He has stood in front of the House Education committee during Legislative session and testified how Dyslexia affects his life and we need more help in the schools. I have watched him lead his IEP meeting and let the teachers know what he needs to be successful in school. I have watched him study and learn and grow and then educate others on his hearing loss and his BAHA’s. I have watched him step up and be leader in his scout troop and mentor younger scouts. I have watched him excel in scouts and already knows what he wants to do for his Eagle Scout project, collect hearing devices to be given to Hands & Voices. I have watched him excel in bowling which is his favorite sport. I have watched him decide he wants to learn to cook, and cooking he does. He has mastered baking bread, lefse, and can cook any meal we have. He loves to cook for the family and loves helping me can our summer bounty. I have watched him learn the art of fishing and shooting with his Dad. They have worked hard to make sure he knows safety guidelines, setting up a left eye dominant gun for him, they love to spend all the money buying fishing lures and planning their next trip to the lake. I have watched him as he attended the national EHDI conference with me and talk to adults with hearing loss and share stories. I have watched him attend camp with deaf and hard of hearing kids for the first time as a teenager and make a new set of friends. I have watched him for two years volunteer at the Special Olympics State Basketball tournament and hand out awards to the athletes. It is his favorite event every year and he loves volunteering. I watched him set a goal to raise money for the Sertoma walk and reach that goal. I have watched him take on leadership roles at church with his youth group and guide and support those around him. If all of these things have taken place in 13 years I can’t even begin to imagine what the rest of his life will look like. He truly amazes his Dad and I every day.
Holden’s story is one that I think is remarkable. I think he is remarkable. He carries himself with grace.Oh of course he is teenager, lol, he likes to sleep and gets grumpy and loves video games. Holden is the youngest of a combined family. I had 2 boys and my husband had 3 children when we married. We added Holden to the mix. He is definitely the glue that holds our family together. He has adult siblings with next closest sibling a senior in High School. He is the one I will find making phone calls to his older brothers and sisters to “just check” on them. He goes out of his way to keep that connection there.
I always describe Holden as wise beyond his years. He has been faced with so many challenges and trials and yet he keeps going with a smile on his face. He is always concerned with others. He checks on his siblings. He worries about me when he is the one going into surgery. He makes sure to check in with Dad when he is away working in the oil field. He face times with his brother in the Army to see what he’s up to. He has been at every single baseball game, track meet, school play, concert, awards ceremony, speech and graduation over the years for 5 older brothers and sisters. He is their biggest cheerleader. Holden loves life and lives it to the fullest.
I hope this has given you a glimpse into Holden and his story and how we have ended up where we are. I know every parent is proud of their child. Pride is one things I feel towards Holden. I watch him and I am in awe of what he has accomplished. How he handles hurdles and how he treats those around him is something you don’t see all the time. Holden is full of compassion and understands when others have disabilities or struggles because he has been through tough times. Holden is his best advocate! He loves to the fullest and makes the world a better place.
Are you inspired by Holden’s Story?
I couldn’t help but have my eyes filled with water when I read Holden’s story. We both had many surgeries trying to fix our hearing or make it better. It’s such a frustrating and difficult journey! I have many memories where I felt like I gained more hearing, then it would go away again. It can be a rollercoaster! Like Holden, I also wear a bone anchored hearing device after many years of wearing a regular hearing aid. I wanted to capture Holden’s true heart in this painting. In my opinion, this pose gives us a sense of calm but at the same time, he seems to be paying attention to us, listening! At last, I wanted to show how his BAHAs now give him access to new sounds he’s finally able to hear.
How do you relate and connect to Holden’s story and painting?