Happy Birthday Evan- You are a tough guy buddy!
Today, my second son Evan turned 16. There were many years where we did not know if he would make it to 16 years of age. After my first son Joey was born with severe disabilities, we underwent high risk neonatal counseling and testing and were advised that Joey’s condition was an intrauterine mutation and having a second child with similar disabilities would be like winning the lottery twice. So, it was with same hopes and dreams of any parent that we welcomed Evan into the world on this day 16 years ago. Evan was born with normal head size and normal birth scores and it appeared that all was well. Unfortunately, he would manifest the same syndromes that Joey had. To this day, after extensive blood, DNA and genome testing, we have no formal diagnosis for the conditions my sons have. They both are nonverbal, cannot walk and are tube fed and in diapers. They will never say a word, but like I have said many times, they speak volumes to us about life and love every day. We have 24-hour nursing at our house and our nurses provide care and love.
Evan had a really rough start in life with many serious GI issues and we (especially April) spent hours in emergency rooms and doctor’s offices and days in hospital rooms and ICUs. Despite having numerous abdominal surgeries, Evan had severe pain for the first 14 years of his life. He would cry and scream in pain almost nightly and could not tell us what hurt. His pediatric surgeon Dr. Jeff Haynes (and the VCU team) stayed the course and finally, 2 years ago, an additional GI operation changed things for the better. Evan has improved 90% and spends more time laughing than he does crying. He is such a pleasant guy, it is so good to see him comfortable.
Evan loves loud things, so any show with cars and guns will keep his attention for hours. The Fast and Furious movies are among his favorite. He also loves to laugh at me when I play guitar for him. Not sure that is a compliment on his part!
Before Evan was born, like any father, I envisioned it all differently, today would be the day I would take him to get his driver’s license, etc. etc. Broken dream are part of life and although my sons have severe disabilities they are normal to us. We take them in the pool every night in the summer. Joey splashes (in my face) for an hour straight wile Evan chills in April’s arms, thinking it is his spa treatment.
Some people are considered tough because they can knock someone down or catch a ball. Evan is tough because despite his severe disabilities and multiple operations, he always has a smile on his face. He has endured years of pain and suffering and is catching up on his smiles. His big brother Joey is even tougher!
We love you Evan, Happy Birthday