About the Plunge

Introducing Nathan Masone, Honorary Co-Chair of the 2012 MSP Plunge

Matt and Laura Masone, a happily married couple living a normal suburban life in Severna Park didn’t used to know very much about Down syndrome. That is, until December 29, 2010, when their 3rd child – Nathan – was born and 24 hours later officially diagnosed as having DS.

Of course, typical of many children born with DS, there were immediate medical issues to be concerned about before the news of his diagnosis could really sink in. In Nathan’s case, this included breathing and digestive problems, and ultimately the diagnosis of a VSD and an ASD, meaning he had two large holes between the left and right sides of his heart and would need surgery to correct them. So after extended stays at both Children’s Hospital in DC and Anne Arundel Medical Center where he was born, and even a short stay at home where they learned to feed him his high-density formula through a feeding tube while they waited for him to gain weight, Nathan finally underwent open-heart surgery on March 24.

And just one week later, Matt and Laura finally brought their baby boy home for good. And with the medical issues resolved, this is also when they stopped and really considered his DS and what it meant for him and for their family.

“In those first days after he was born, my immediate reaction was fear,” said Laura, a stay-at-home mom raising the couple’s two older children, Madeline (5) and Jacob (3). “I thought about everything in the future and kept thinking about all the things that, at the time, I thought he wouldn’t be able to do.”

Matt, a Sales Representative with Lincoln Financial says that they were both numb for about the first three days. “I thought about him, our other kids, and even our retirement. I was imagining us at 80 with a 50-year-old son still living at home with us,” he said. “Everything gets clouded by images of Nathan being completely dependent on us or someone else for round-the-clock care for the rest of his life. It really was just fear of the unknown.”

Perhaps because of the intense focus on his medical needs in those early months, or maybe because of other challenges that have faced the couple in the past, by the time they finally got Nathan home they both realized he was just Nathan and that while life as they knew it had changed, it was going to be okay.

“Those first weeks were very difficult,” said Matt. “All you’re thinking about is what you think he can’t do. It’s all the bad stuff. But we couldn’t have been more wrong in thinking that Nathan couldn’t live a fulfilled life with normal experiences. Now that we have moved past seeing only the worst-case scenario we realize that just like any other child, we are going to give him the best environment to thrive and become his own person.”

“Now, I just know him as him,” added Laura. “It’s not about what he has and we had to figure that out. We both had to learn for ourselves that DS doesn’t define him.”
Adds Matt, “It’s like I woke up one day and just realized it’s all going to be okay.”

Once they finally got Nathan home, the family settled in the routine of having three young children and decided to just enjoy the summer and the long, lazy days at the pool, which meant that all of the educational materials went into a drawer downstairs, while they simply enjoyed their son.

His older brother and sister – who referred to him as their “Brother in a Box” during his early days in the NICU know only that he has something called Down syndrome and as Laura described it to them, “that he is extra special and needed the doctors to fix him up when he was born.” In fact, both parents feel that one of their biggest accomplishments was that Maddie and Jake were largely unaffected by all of the events and emotions of the last year – something that they hope continues well into the future.

“Nathan thrives on being with his siblings, and they just love him,” said Laura.
“A recurring theme in the educational materials I have read is to remind you to remember that you have other kids,” said Matt. “It’s not their job to be his parent.”
“I want to believe that Maddie and Jake will want to be there for him when they get older,” said Laura, “but because they want to do things for him, and not because they feel like they have to. It’s a big part of the reason why we are hoping Nathan will be able to live independently. That way he’ll need his siblings just as siblings.”

“When I was in the hospital I got a pamphlet from the National Down Syndrome Congress and on it was a photo of a young man with DS toasting his brother at his wedding , and that resonated with me because – just like Laura said – Nate is Jake and Maddie’s brother regardless if he has DS or not,” added Matt. “The love, respect and pride in each other doesn’t change because of the diagnosis and that photo was one of many things that helped me push past the fear that followed the news of his diagnosis.”

Matt and Laura both acknowledge that having a child born with a disability makes you think differently about what comes next.

Says Laura, “You realize that life just isn’t going to be the way you’ve been thinking your life’s going to be. Ultimately though you just want the best for all your children and you realize that the best for each one is different. And it’s okay if what Nathan gets out of life isn’t my dream, so long as he’s happy.”

Both agree that Nathan gaining his independence is the goal for him as an adult, so they are focused now on his communication skills and intend for him to receive a good education. Nathan is currently working with both a physical therapist and an occupational therapist through Anne Arundel County’s Infants & Toddlers Program and making great progress in his development. And both parents look forward to getting Nathan involved in Special Olympics programs once he’s old enough.
For his part, Nathan is a thriving almost-1-year-old with a killer smile, jumping, laughing and communicating in his own way. “He has already exceeded my expectations,” said Laura.

Her advice to other new parents is to simply love your child. “Give them love, treat them normally and they are going to thrive,” she said. “Just take it one day at a time and enjoy your baby being a baby. But know that it’s going to be okay.”

Matt encourages parents to educate themselves, read all that they can, and reach out to others whether through support groups and associations or in the workplace or your neighborhood. “One thing I hated to hear when we told people about Nathan was ‘I’m sorry’ and it’s almost funny because it actually says in the books that that will happen to you!”

After taking time to bond as a family and adjust to life as a very special party of five, the Masones are now gearing up to be a part of a big event in a very public way, as Nathan has been named Honorary Co-Chairman of the 16th Annual MSP Polar Bear Plunge to benefit Special Olympics Maryland. Ravens QB Joe Flacco is the other co-chair for this traditional winter-time dip into the Chesapeake Bay that will take place on January 28 at Sandy Point State Park.

Matt has also signed on to the Super Plunge team, meaning that he has set a fundraising goal of $20,000 (double the minimum goal for a Super Plunger) and will join this elite squad of participants who brave the Bay every hour for 24 hours straight. He attended as a spectator last year, primarily to support a friend who was on the Super Plunge team and take a break from the hospital and was blown away. “I turned to my mother, who was there volunteering, and said ‘We’re doing this next year!’ You could just feel the energy, love and excitement flowing through everything.”

And it’s even sweeter that the funds raised through both the Plunge and the Super Plunge benefit other families just like theirs – families who are just as lucky.

“Nathan amazes me,” said Laura. “We had to cry and be sad and pick each other up at first but there shouldn’t be a sense of pity. What I want for other people to understand is that you can say to us ‘He’s beautiful, you’re so lucky.’ Because we are.”

Click here to visit Matt’s fundraising page and make a donation in honor of Nathan.

Create an Account

Registering for the plunge allows you to track your donations, compete with other fundraisers, connect with other plungers on the message board, email your friends about your plunge, and create your own personal webpage. Once you've created your account, login to the PlungeHQ and get started fundraising today!

› Register for the MSP Polar Bear Plunge

› Register for the Cool Schools Challenge Plunge

For Email Marketing you can trust