American Dream: Part 2
Soon, we were able to meet with these specialists. At our visit with the ophthalmologist, she saw that one eye was slow moving, and the (non-surgical) solution she wanted to try was an eye patch. Ryan freaked out when we applied the patch, but we persevered because it was our best shot at helping him achieve “normal” vision. Using our last $60 for gas money, and not eating on the trip because we lacked the funds, we went to New Jersey. The orthopedist took x-rays that showed there was nothing wrong with Ryan’s bones. This doctor acknowledged that Ryan’s muscles were floppy, like overstretched rubber bands. There is no way to fix this problem, but physical therapy would help to strengthen the muscles for the future so that he could sit up. Early Intervention was suggested. The neurologist was the next appointment to see if we could fill in the reasoning behind Ryan’s problems. He gave us nothing as his MRI came back negative. Ryan just laid on his table helplessly as he could not hold up his body weight of about twelve pounds. If he placed all of his weight on his head and raised his butt in the air, he could roll over. That was the only milestone we had at ten months old for Ryan.
Fast forward nine months. Finally, Ryan received a diagnosis of epilepsy and cerebral palsy, both of which could potentially be attributed to his difficult birth. Medication controlled the seizures and allowed Ryan to sleep through the night, which he had never done before. With the help of numerous therapists (we had at least two at the house every day, five days a week), Ryan was able to crawl. Our son was still non-verbal, but we were just beginning to unlock his communication potential. After eliminating numerous diseases and illnesses, we finally had some type of answer; we were very relieved. As a former teacher, I wanted to learn everything I could about the future educational and physical implications for our son. Every professional, doctor and therapist alike, assured me that there was no way to know the future. A renowned geneticist once told us our son might never walk. Ryan still was not eating or walking at this time. He was heavily medicated. We had no answers to give others who tried understanding what it was like to live in our rabbit hole. Except for a few family members, we were shutting everyone out because they lacked the understanding as to what we were experiencing.
We are finally in a great place. Right before his diagnosis, we found out that we were expecting another child. Ryan has an amazing neurologist in New York City who was found on the recommendation of our physical therapist. Ryan learned how to walk. He still flaps and has weird mannerisms, but the stares in public have slowly disappeared as have the screaming noises instead of words coming out of his mouth. He loves to walk next to the shopping cart now. Ryan adores babies and will spend hours laughing with them. Every time we go somewhere, Ryan is sure to point out all of the lights and laugh. We are not able to have “real” conversations with him, but we do have clear eye contact now that he has emerged from his medicated fog.
Our schedules still center around Ryan, even four years later. I stay home during the day in case of a problem at his preschool and work nights and weekends to support our five children. Our family does not go to large events which may be crowded or noisy, as that would overwhelm Ryan. If Ryan has a bad CP day, meaning his muscles are weak and/or painful, we limit where we go and what we do to prevent further pain for him. Ryan’s body may fail him some days, but he has amazing people to use their voices for him. He has inspired his older sister who originally wanted to become a vet, to become a physical therapist instead. Our family lives on a modest income that is supplemented by meaningful time together. Our younger son helps Ryan by holding his hand and looking out for him. People asked us why would have more children after having one with special needs. Ryan needs Sean so that one day when Tom and I are no longer “parents for life,” Sean can take of his older brother. Coming from the perfect world to the one of struggle has taught me that I can change the world, even if it is only Ryan’s. Welcome to our American Dream.