Big Steps, Small Victories

From the moment a baby is born, we begin the preparations that will gradually, over the following 18-21 years, if we did our job well, lead to adult independence. When the baby is diagnosed with a neurologic genetic disorder and the list of possible manifestations includes some pretty scary stuff, the normal course of events naturally gets cloudy.  For many years, I did not know that my son would ever become an independent adult. Today, I waved from the front porch as he nervously drove down the driveway toward his first rented space away from home, a very big step. When he was out of view, I went inside and melted into a puddle of tears and uncertainty on the foyer floor.

He was just 6 months old when the neurologist confirmed the neurofibromatosis diagnosis. I was told to take my baby home and love him and enjoy him. He said, "Don't search it on the internet. You won't like what you see." There were no treatments and there was certainly no cure, so the only option was to watch for changes and wait for symptoms.  He even sent me a packet of information with a note taped to the front page, which let me know that there would be no purpose in actually reading any of it because it wouldn't change the outcomes, it would only cause me more worry.  He didn't tell me what to watch for and he didn't mention how long we would have to wait. I actually did not read the packet of information, I tucked it into a drawer and left it there, but I found a pamphlet inside from the National Neurofibromatosis Foundation (NNFF, now Children's Tumor Foundation) so I visited their website and found our community.

The first 3 years of his life were a blur of missed milestones, evaluations and therapists. NF not only causes tumors, deformities, chronic pain, deafness, blindness and increased risk of cancer, but 60% of the cases come with the added bonus of learning disabilities and developmental delays.  Our only power was in our ability to be proactive about his learning and do everything we could to stack the odds in his favor. Therapists came to our home for the first 18 months and he began in a developmental preschool by age 2. From then on, he went to school, on a bus, 5 days a week and received physical therapy, speech and language therapy and occupational therapy as well as small group instruction. He continued to have regular therapies and specialized education throughout his school career right up until 12th grade graduation. He had 12 month programming for many of those years and the evidence of success came through the school reports which documented progress.  He didn't spend his summers learning sports or enjoying sleep away camps, he spent them cementing his learning and struggling against regression. 

Does that mean our son missed out on being a kid? In some ways he did, but we found balance. We searched out creative solutions and found summer schools where he could spend half the day in a YMCA camp with extra support, signed him up for adaptive sports teams, put a swimming pool in our backyard and played outdoors as a family.  From age 12 through 16, he even flew solo, cross country, each summer  to spend a week in summer camp with other kids who shared his lot in life. His childhood was as normal as it could be without sacrificing his potential. The goal was to give him every opportunity to have a fulfilled and autonomous adulthood in which he could provide for himself (and a family down the road). And now here we are, in yet another of those big moments which lead to small victories.

Tonight is the first night that this almost 21 year old man will sleep in a rented room and practice his
self-sufficiency. We did right by him. He may not have had the same experience as other boys along the way, but the other boys were not on the same playing field he was on. His life was fraught with extra challenges and he overcame them. We watched for changes and we waited for symptoms, but we didn't stop fighting while we did it; we fought harder. We surrounded our son with a community of people who understand him so that he would never feel alone or different and we found ourselves a family.

My tears of uncertainty as he rounded the bend earlier today are not for lack of confidence that he will do well. I've seen what he can do. My fears and my ambivalence are grounded in how the world will treat him without my watchful eye to protect him. I'm just going to have to trust that we did all we needed to do to equip him to fend for himself. I will put my faith in his ability to figure out whatever we missed and to know that he has our support and love every step of the way.