Coda

Limitless Love

By Lisa Newbern

Illustration of two children with a mother's arms reaching for them

Illustration by Jason Raish

Raspberries.

Not the fruit, but the sound. What wakes me up every morning is my five-year-old son, Griffin, making that noise. I have come to look forward to waking that way, but I never would have thought that before he was born. Now it is just one example of how he has taught me that the unexpected can bring so much joy.

It wasn’t that Griffin was unexpected; rather, it was the beginning of his life that was anything but expected. Just hours after the nurse placed Griffin in my arms, the doctor told my husband and me she wanted to test him for Down syndrome. I remember feeling immensely unprepared and uneducated. In my prayers, I asked for guidance—not regarding why, but what: what did our son need immediately, what could we do for him in the coming days and months, and what would our life be with a child who has special needs?

It didn’t take long for me to answer the last question: wonderful, and challenging. Part of what makes it so wonderful is watching the relationship between Griffin and his sister. At Griffin’s birth, Marissa was just four, and she was certain she wanted a sister. I didn’t know how we were going to tell her she had a brother—with special needs. We never got to the second part, deciding we wanted her to know and love her brother for who he is rather than the diagnosis he will always visibly carry.

I’ll never forget the first time she held Griffin. She looked at him and said, “She’s so precious.” I replied, “Yes, he is. You have a brother.” Since then, she has naturally come to understand how his development is delayed, but that nothing limits his love for her, nor hers for him.

It is that limitless love that had us hitting the ground running the minute we were released from the hospital, but this immersion also awakened us to the challenges of raising a child with special needs. We hadn’t expected the feelings of grief, the stares from people who didn’t know what to say, and the painful wondering who will help Marissa care for Griffin when we are gone. We also hadn’t planned to spend my maternity leave assembling Griffin’s health care team that now totals twelve doctors and specialists. There was very little time to enjoy being parents again in Griffin’s first year because we had to get to doctor and therapy appointments, learn about Down syndrome, figure out Georgia’s early intervention program, rework our financial planning goals and wills, and help Griffin accept his need for glasses.

By his second year, we were balancing weekly therapy sessions with Marissa’s activities and trying to make our way through inches of paperwork required to apply for a special Medicaid waiver to help cover Griffin’s health care costs that my insurance denies due to exclusions for developmental delays. Every spring, you can find me buried in paperwork, because the waiver must be renewed annually; and every year, during those months, you can see the worry on my face that Griffin’s coverage will be denied.

Leading up to Griffin’s third birthday, we immersed ourselves in the Individualized Education Program (IEP) process for his federally mandated “free and appropriate public education.” It had been hard enough to get a private Parents’ Morning Out program to accept Griffin (one even told us that he would take too much away from the other children), so we weren’t sure what to expect, but knew we had to make public school work. Now, two years in, we have experienced the stress of educational assessments, setting annual goals, reviewing monthly data that doesn’t always show progress, and advocating for the class placement that will best facilitate Griffin’s academic learning as well his social skills development.

Amid these and other challenges we have encountered in the past five years, the immense joy Griffin brings to our family outweighs it all. He is innocence, curiosity, and energy bundled with a strong will, empathy, and the best giggle I think you’ll ever hear. He loves to play—especially with his sister—and to listen to music, swim, ride horses (which he has no idea is actually therapy), and watch Shaun the Sheep and Jake and the Neverland Pirates.

We’ve often been told we are blessed to have Griffin. I believe we are blessed to have two children to love. Because of this, I have added to my list of questions: what can we do to help others? We have been helped by amazing health care providers, organizations focused on improving the lives of children with special needs and their families, teachers, and the friends we’ve made because our son has an extra chromosome.

I found connecting with other families especially helpful, so I wanted to be there for families who would encounter what we did. I started by training as a Down Syndrome Association of Atlanta parent liaison, and then began serving as a resource for families who had just received a Down syndrome diagnosis or were new to the Atlanta area. This led to coordinating monthly play groups and, more recently, selection as a family adviser to the Georgia Council on Developmental Disabilities. In my application, I wrote, “Too many people do not understand developmental disabilities and delays, nor see the great potential those with such disabilities have. I want to help change this and foster communities in which those with developmental disabilities are welcomed and valued.”

I value the gift Griffin is in my life every day, and I want to help others know the joy he and others with special needs bring. As I work toward this, I know communities of greater acceptance are within reach—yet another unexpected joy I’ll experience, thanks to my wonderful son.

Lisa Newbern is chief of public affairs for Yerkes National Primate Research Center at Emory.

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