I knew as soon as Lukas was born, there was something wrong.
They life flighted him to Oakland Children’s Hospital the day after he arrived due to a possible heart anomaly. He was paralyzed on the right side, but that subsided and they released him after a day. After expressing concern to his pediatrician about my instinct after having three other children, he referred me to an AMAZING neurologist, Candida Brown.
She gave us the information regarding Early Intervention, ordered tests, and referred us to other specialists. I will never forget the day she relayed the information. The final FSH test resulted in the diagnosis. At nine months, we realized our lives would never be the same. We met with a geneticist from UCSF and unfortunately he had very little to offer in regards to this deletion.
We had an array of possible conditions to contend with. Obviously we were devastated, overwhelmed, and uncertain about what was next. We listened to all the experts and acted on referrals to specialists. The ophthalmologist diagnosed him with “Duane’s Syndrome,” which was actually not on the long list of possible medical issues or life long issues he could have had. He had MRI’s due to the macrocephaly, which resulted in a small amount of fluid on his brain. He had an EEG due to possible seizure activity. He suffered from Eczema, and one of the most frightening was Tracheomalacia. We endured six months of ultrasounds due to a possibility of Wilms Tumor. Most of the issues have subsided but still require yearly medical evaluations.
After entering an Early intervention we were told Lukas suffered from mental retardation. However, after being in various academic programs and watching behaviors we know that he is on the ASD spectrum. Lukas is non verbal, and still incontinent. He is nine years old and in and SDC class in his own school district. We have fought and struggled with placement for several years. Lukas father left when he was two years old.
Although Lukas struggles with cognitive, social and physical issues; he is the most amazing, strong willed, happy little boy I know. My three older children and I have watched growth, progress and hope. He struggled to walk at three years of age, but has turned into a little boy that wants to ride horses. He loves water, elmo, and fans. When he rides a horse, he literally glows with joy. His interaction with horses is amazing. He hears classical music and he smiles. He can play a melody on a keyboard without any guidance. He can sing a scale in perfect pitch yet he only has a vocabulary of a few words. We have an iPad, which is mostly used for his visual support of stimulation. But he is beginning to try to use the applications for communication.
Most importantly, we have hope. We have been changed. We have been informed, and most importantly, we take nothing for granted. He has opened our eyes to what matters. I am so thankful to that I was chosen to be his mom. I am blessed.