Ryan was a beautiful baby boy weighing eight pounds and fifteen ounces, born on January 21, 2004. He got a great Apgar score and appeared to be healthy according to the doctors. Darren and I fell in love with every little part of Ryan immediately. We counted each of his little fingers and toes and would stare at his sweet lips. We were so calm and controlled for being first time parents.
The first few months as a new mom were wonderful. He was a good baby. Ryan was adorable, a great sleeper and a good eater – all of the things you want from an infant. The first milestone that most parents wait for is the SMILE. We waited and waited. I would stare into his beautiful eyes, sing silly songs, speak that baby talk that parents do but I would get little to no reaction. We felt like he stared through us. Finally, at nine weeks of age, a few weeks later than the typical child, he gave us his first smile. Although we didn’t realize it at the time, but waiting for milestones was something we needed to get used to.
At five months of age Ryan wouldn’t grab at anything. I spent endless hours down the toy aisle in Target trying to pick out “the toy” that would suddenly make Ryan want to grab and reach. I knew it was strange but told myself that he hadn’t yet found anything that interested him. I began to take Ryan to Mommy and Me and quickly came to the realization that Ryan was not developing like the other children. The other babies cooed and giggled at themselves in the wall mirror while Ryan didn’t notice himself. The other babies made progress in their physical development and mine remained stagnant. The others had a sparkle in their eyes and mine had a blank stare. The other babies would grasp at a Cheerio for a snack while mine would gag if one was placed in his mouth. I became angry and just wanted him to scream NORMAL like all the others.
When Ryan was six months old I compiled a list of concerns and questions and presented them to our pediatrician. After a thorough examination of Ryan he recommended for Ryan to see a pediatric neurologist. Our world was rocked. I didn’t hear anything the doctor said after that, but I didn’t need to. The tears flowed that day and didn’t stop for several months.
Our roller coaster ride of testing began. EEG, MRI, and finally a FISH blood work test would reveal chromosome 15q duplication syndrome. Our neurologist admitted he wasn’t very familiar with this type of chromosome abnormality. We saw a geneticist who explained Genetics 101 and gave us brief explanation of what to expect, seeing our fragile state. We were pregnant with our second child and were relieved to learn that this chromosome abnormality was sporadic at conception.
One day I looked around and realized that I had lost several months of my life during testing and would never get them back. Nearly a quarter of a year had gone by and I couldn’t tell you what I did during that time except shuttle to doctor appointments, worry, and lose sleep. I had been caught up in this horrible nightmare and life was still happening around me. I needed to be a part of it. Therapy began, time passed and we began to have more control and understanding of the path our lives would take.
Ryan’s first structured school setting was at two years old. He attended a PALS program two mornings a week at Easter Seals. This language -based program gave Ryan stimulation while learning to separate from us. Ryan could sit unassisted, bunny hop, and would make eye contact and smile. He could also thrash his head backward onto tile, cry when hearing the sound of running water and whined while flapping his hands. Luckily the therapists were used to all behaviors – good and bad.
At three years old Ryan transitioned from Part C to Part B (federal law IDEA) and began a developmental preschool where he would attend for two years. Ryan would learn to pull himself up, stand and walk just shy of four years of age. Ryan was nonverbal and he developed a personality which would soon give him the nickname of “The Mayor.” Ryan loved to share his bright smile with everyone, that same smile we waited weeks and weeks for when he was an infant.
When Ryan was three years old, life would yet bring us another surprise – a third son. Having three boys very close in age proved to be a challenge at times but was great stimulation for Ryan. As Ryan developed and we passed through phases and stages, we learned, reflected and grew as individuals and a family. We were fortunate that Ryan was a healthy boy and was making slow and steady progress.
As with any transition time, we can become overwhelmed with uncertainty. Upon careful and thorough research, we decided to send Ryan to a private elementary school. We were lucky enough to have an innovative school for children with moderate to severe developmental disabilities a stone’s throw away from our home. He has attended this school for three years and receives therapy and has a two-to-one student/teacher ration. His school has a life functioning skills curriculum where he has learned to communicate with his IPAD, feed himself, and perform daily life skills. His favorite new task is to turn on and off the T.V.!
Ryan is a happy, healthy seven and a half year old boy. He participates in a special needs soccer league, attends Sunday school at our church, and is recognized all over town by his sweet wave and magnetic smile. He isn’t yet potty trained and hope to attempt this daunting task in months to come.
I don’t know what the future will bring for Ryan but we know there are no limitations to his destiny. We don’t have a crystal ball to tell us how far Ryan will go in his life or where this journey will take us. I sometimes lay awake at night wondering what Ryan will say if and when he starts to talk. Will it be here on Earth or in heaven? I can’t answer those questions but have a prediction.
Ryan thanks me for being his biggest cheerleader. He says how happy he is to have a mom and dad that treat him like any other child. We haven’t let his disability define who he is and how we have treated him. He is proud that his mommy brags about him like any other glowing mom does about their child. He tells me how fortunate he is that he didn’t have to hear me complain about him to my friends or family. He says how happy it made him that we included him on all the family outings, vacations and daily life activities. He tells me how much fun he had joining us even if he couldn’t participate in things that were “hard” for him. Ryan thanks his daddy for taking him to a hockey game even though the noise level forced them to leave just as the game had started. He is thankful for the extravagant birthday parties I planned for him even when it seemed like he didn’t care about his “big day.”
When I hear Ryan’s voice he is going to tell me how grateful he is that I accepted him for who he is. We have worked so hard to get him to where he is today, why would we want to change that? Who would he be? Ryan will tell me that he appreciates me adapting my plans, visions, and expectations of the path my life will take to accommodate him. He recognizes that I am “coloring outside the lines.” Ryan thanks me for being patient and trying my best when I couldn’t understand the message he was trying to convey to me. He couldn’t tell me when the antibacterial wipes I packed in his lunchbox each day irritated his skin and gave him an eye infection.
As I listen to his kind words to me I hold back the tears and know at that very moment that all of the years of therapies, doctor appointments, conferences, and educational plans have been worth it. The seemingly daunting task of raising a child with a disability has been successfully accomplished. The twists and turn of life have taken me to a wonderful land full of promise and hope. The waiting is finally over. All of the hard work has paid off and we are winners!