It starts with the offering to go deep and to ask a few questions. Perhaps it’s never been explained better than through these words from author Dean Del Sesto:
“The empty pleasantries of dancing on the surface of people’s lives seem the norm when real richness exists in engaging at a deeper, more intimate level. Discovering what is really going on with people is the beginning of relationship, and it can be done without being obtrusive simply by asking great questions, ones that challenge, open up and reveal what is real for a person.”
We need to get real…because everyone has a story.
I am Mark Brodinsky and this is The Sunday Series.
The Sunday Series (110): The Vision of Life
We’ve all heard the saying silence is golden, but not when you come into this world unable to hear a single sound.
Rachel Root says it all began when her son Zachary failed his first test. Only one day after he was born, it was standard procedure at the New Jersey hospital to test the new baby’s hearing. “There were a bunch of people in the room when they came to do the hearing screening”, says Rachel. “I went to the University of Michigan, my husband Jared went to the University of Arizona. When Zachary failed his first test, we all joked, we thought it was funny, he must take after his dad.”
But on day two when their new baby failed the same hearing test no one was laughing. “It felt like someone slipped a noose around my neck”, says Rachel. ‘What do you mean he failed again?’, I said. “My husband’s uncle is a pediatrician, he told me he never had any kid fail the newborn screening test and had it turn out to be anything significant. But I knew. When I nursed my daughter Emily after she was born she would jump if she heard a noise. With Zachary there was nothing, no recognition of sounds. My husband’s uncle thought I was crazy, I was panicked.”
A week later Zachary’s hearing test was a flat line. At 30 days of life, the same result. The Root’s were given a pamphlet on how to raise a deaf teen. Rachel says, “my husband was punching walls, I was heartbroken.”
For most parents when faced with a challenge to help their child, they leap into action. Rachel is no different, she says she wasted no time, her personality is to do something right away, to fix the problem. But what Rachel didn’t know, though she had her suspicions, another challenge was on the horizon.
She and Jared immediately met with an early intervention team and Rachel says the first thing this woman did was toss the pamphlet they had been given into the garbage. This woman told the couple there was hope, they referred them to a surgeon, Dr. Roland and an audiologist, Theresa Shaw. Rachel says Theresa gave her hope. “She didn’t speak to me like this was a scary diagnosis”, says Rachel. “Others were shocked by all this, she was not shocked, she was very matter-of-fact. There were options.”
The options consisted of hearing aids for a few months, then an evaluation of their usefulness for Zachary to receive cochlear implants at 6-months, a delicate procedure which could change his life. There was also a trip into the city (New York) for Rachel and Jared to visit a hearing center, meet with other parents whose children were recently diagnosed and to hear from some children and young adults who had been born deaf, but for whom the cochlear implants changed everything.
Rachel remembers, “It was amazing for Jared and I. There was a 5-year-old, a 7-year-old, a teenager and a college student. To hear them speak, there was nothing to tell they were deaf. We needed to see proof that Zachary would be OK.” Rachel also needed to know she would be OK, so she joined a weekly support group with other parents going through the same thing. With the support group, and a successful, but delicate surgery at 7-months-of-age, Zachary was finally on his way to hearing and speaking. Rachel says it was such a joy when Zachary learned his name and would look up when she and her husband called to him. “Everything was a huge milestone”, she says. At the same time Zachary was doing what any normal baby would do, growing, and gaining the skills of sitting, then standing.
But Rachel noticed something was a little off.
She says her son was late to sit, late to stand, (later then the other kids around him), and so Rachel started Zachary on physical therapy. The doctors had told her sometimes children with hearing loss can have issues, but as he continued to grow Rachel says she saw more of a difference between Zachary and his peers.
And there was something strange happening at night.
Rachel says, “I would come into his room at night, and he would look right past me. He would ask,’ Mommy, Daddy who is it?’ “It was like he couldn’t see me at all in the darkness. Zachary is also obsessed with Jared and always wanted to see him in the morning, but if there was a morning Jared left early, Zachary would go over to his pillow and lay down to “see” if he was there. All the doctors told me I was crazy, there was nothing to worry about.”
At the same time Rachel thought Zachary might be experiencing issues with his sight, the man who helped bring vision to Rachel’s own life, her father, was killed in a tragic car accident. “It was devastating”, says Rachel. And a soon-to-come family reunion made things even worse.“A few months later we wanted to get all of the family together and had some of my cousins over the house. After watching Zachary, one of them who does not have kids yet, came over to ask me if I ever heard of Usher Syndrome. She said she and her husband were trying to have a baby, had been tested and she was a carrier. I was sick about it. I couldn’t let it go.”
After a few months, the Root’s finally managed to get their son tested. The result: Zachary was diagnosed with Usher Syndrome 1f, a syndrome where a child is deaf in both ears, as well as eye disease which causes night blindness and a gradual loss of peripheral vision, leaving only “tunnel vision” and in a small number of cases, can lead to total blindness over a lifetime.
Rachel recalls the moment she found out: “When the call came in with the news, I told the woman on the other end I would have to call her back in 20 minutes. I was so upset I couldn’t understand what she was saying. We were doing so good. We overcame deafness, my mom getting breast cancer, my dad dying suddenly. And now this… it was one of the scariest things I heard in my life.”
Rachel says there is very little funding specifically for Usher 1F, but a mother in Boston started a collaborative, non-profit foundation, (http://usher1f.org/). And there is Dr. Edwin Stone, researching and fighting for the cause at the Stephen A. Wynn Institute for Vision Research, (Wynn, the billionaire businessman, has retinitis pigmentosa and donated 25 million dollars to fund the center at the University of Iowa). Rachel and Jared also turned to Facebook to share their message about Zachary and to raise funding to help find a cure. They have already raised $200,000 for the Usher 1f non-profit.
Zachary, who is now 4-years-old has gone through extensive testing. For now its been determined he has cystoid macular edema, cysts under his retina which affect his central vision. The Root’s are doing their own trial and currently put drops once-a-day into Zachary’s right eye. If it works in one eye, then both eyes would get the drops. The family goes back at the end of this month for additional testing.
Rachel says in the first 4-years of his life Zachary has been through so much. Yet it is the resiliency of youth and the wonder of the early stages of life which Rachel says have let her son be just like every other kid.
“He happens to be the sweetest, happiest, most even-tempered boy”, says Rachel. “He doesn’t know he’s different. He has a great group of friends. If his cochlear implant falls off, they put it back on for him. He’s had so much therapy and so that’s made him so good being with other people and working with other people. He has a hard time with balance, a hard time on the steps and it can be tough on the playground with other boys. He’s a little more hesitant. But my mom and I joke God may have taken the other “stuff” from Zachary, but made him the sweetest boy ever.”
“My older daughter Emily, (10-years-old), has had a hard time with everything. She has no symptoms, never did, but all of this experience has happened to her too. She was also very close with my Dad because he would take her and spend time with her while we ran to all these appointments with Zachary. She did a bake sale at school for Zach. She even brought him into school and explained it all to her class. How she explained it and how accurate it was, was amazing. She was heartbroken when she learned Zach might go blind.”
“My husband and I have become animals when it comes to fundraising and raising awareness about Usher Syndrome. We say it all the time, we will stop at nothing for this little boy. People say you are amazing – we say it’s our kid – we put on a great face – but we are scared, it’s scary. When my dad died the hardest part for me was there was nothing I could do. I had to just take it and accept it. But with Zachy, I can do something.”
As with any challenge in life there are lessons to be learned, perspective to be gained, and a sharing and caring which comes out of all you have experienced and the vision of a long road ahead.
Rachel says she has gained so much perspective: “I think the thing I learned the most is as bad as you feel in the initial moment, it has to get better and it does. My mom, my dad, the usher syndrome, the unknown is scarier then the known. As bad as it is, it’s going to get better. You don’t live in the anxiety part forever. It’s not as scary once you have all the facts. I still have my moments, but it gets better.”Many researchers are confident that in Zach’s lifetime he will be able to see again and there will be a cure. The Root family hopes that vision comes true. In the meantime, they await Zach’s next vision test, and their never-ending quest to see a bright future for their son.
And until next time thanks for taking the time,
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