How a child’s life bloomed after a nightmare diagnosis
Mothers around the country will be receiving candy and flowers on Sunday to celebrate the unconditional gift that is motherhood.
The way Town of Grafton resident Sue Mayer looks at it, each day she gets to spend with her son Sam — as well as her other two children — is gift enough.
Mayer’s thankful spirit is captured in an ongoing blog titled “Special Needs Mom.”
“It has been a great journey … something I wanted to share,” Mayer said, drawing from her professional background in marketing.
The blog was inspired by the seemingly endless challenges and blessings that came with the birth of Sam, Sue and Jeff Mayer’s youngest child.
Now 15, Sam has already experienced a lifetime of medical issues and procedures.
It started with a diagnosis of Down syndrome at birth, as well as a list of respiratory, immune and feeding issues.
Sam’s earliest days were filled with doctor’s appointments and hospital stays, including several episodes where he stopped breathing.
As a result, he suffered brain damage caused by oxygen deprivation that “would effect his right side and forever change our world,” Mayer notes in the first entry in her blog.
Sam was also diagnosed with apraxia and aphasia, and later was found to suffer from hip dysplasia and Perthes.
Rather than documenting a wearisome “organ recital” of medical conditions, Mayer’s blog is mostly uplifting and often inspiring.
In fact, the first words in the online journal virtually shout that positivity — “First and foremost, Sam is amazing!”
Mayer said writing the blog was her way of keeping friends and family posted on the obstacles and progress encountered with Sam.
Although doctors initially told the Mayers that their son had limited prospects, including the likelihood he would never be able to walk on his own or develop an intellect beyond that of an infant, Sam has thrived — but on his own terms.
“The diagnosis was every parent’s worst nightmare,” Mayer said.
That Sam was able to prove those doctors wrong has happened largely because his mother refused to write off her son’s future.
After Sam frequently became ill while attending early-education classes, Mayer decided the best way to reduce the number of hospital visits would be to home school her son. She jokingly calls that domestic setting Mayer Academy.
Mayer said she has received an abundance of help from the National Association for Child Development.
“It is a great comfort to know you are not the only family to go through this, you are not alone,” she said.
Sam didn’t have the ability to communicate through speech until he was 7, but thanks to repetition and perseverance on his mother’s part, Sam now has a vocabulary of 400 to 500 words.
Often, those words are strung together in succinct phrases his mother calls Sam Speak.
“He may not always respond the way people expect, but he can say a lot of things. Sam has a way of getting his point across,” Mayer said.
Sam’s learning curve has been enhanced through his ready interaction with an Apple iPad, which Mayer said was purchased when the devices first came out.
His mobility is helped with a rolling walker and a powered scooter.
Another essential tool in Sam’s education has been Mayer’s insistence on taking him on “road trips” that have offered some amazing experiences.
With the help of his brother Ben, 21, and sister Danielle, 19, along with assorted other relatives and friends, Mayer has taken Sam to such places as Utah, Montana, Vermont, Maine, California, Arizona, Florida, North Carolina, Tennessee and Mexico.
“My favorite part of those trips is seeing the expression on Sam’s face the first time he sees something new,” Mayer said.
“The first time he saw mountains, he simply said, ‘Amazing.’ I didn’t even know he knew that word and I started to cry.”
Sam is expected to undergo a complete hip replacement in June, but after he recuperates Mayer said she intends to take him on an epic trip to seven National Parks over the period of a month.
“He is a great traveler, probably the best of our kids,” she said.
Although Sam needs lots of attention, there is no sibling jealousy.
“Danielle and Ben love Sam, and they know we always make time for them, too,” Mayer said.
Sam seems to have a knack for connecting with people, even if not verbally.
His mother recalled a time when her son saw woman sitting by herself on a park bench during one of their trips, and he rolled over to her.
“A little while later, he was hugging her. I decided to just wait and see what would happen,” Mayer said.
“The woman later told me, ‘You have no idea how much I needed that. I was supposed to be on this trip with my husband, but he passed away before we could go.’”
As a barometer of how well Sam’s brain is functioning, two or three times a day Mayer will recite a partial song lyric, “Have I told you lately that ....”
If Sam is processing the message, he will complete the lyric, “I love you?”
A similar sense of compassion convinced Mayer to help Port Washington-Saukville special education teacher Mardy McGarry spearhead the creation of Possibility Playground in Port Washington in 2008.
Mayer said her son still loves visiting the all-accessible playground in Port’s Upper Lake Park.
The Mayers can’t help but wonder what Sam’s future will hold, but he is receiving vocational training through Balance, Inc. and is helping with various tasks around the shop at his father’s company, J&H Heating in Port Washington.
Looking further down the road, the family is considering erecting a guest house on their property that would give Sam the ultimate sense of independence.
Shortly after Sam was born, Mayer said, many people often tried to comfort her by saying, “God only gives special-needs children to special parents.”
She disputes that characterization.
“God gives special-needs children to normal parents to teach them how to live with their hearts,” Mayer said.
“Sam helps us to feel more, to appreciate the little things in life and to never give up.”
From that perspective, she said it is difficult to say who is the teacher in their relationship.
“Sam has taught me a lot about patience,” Mayer said. “I have probably learned 100 times more from Sam than he has ever learned from me.”
Photo Credit: TECHNOLOGY AND TRAVEL are two of the teaching tools Sue Mayer uses in helping her son Sam reach his fullest potential. Photo by Sam Arendt