When Nicholas was born, and the doctors said that they suspected he may have Down syndrome, the sadness was suffocating. The phone call from the genetic doctor two days before Christmas with the words, “I know this is not what you want to hear, but Nicholas has Down syndrome” – was a crushing blow.
Nick developed Jaundice and we had to take him back for additional blood work on Christmas Eve. The happiness and joy of everybody getting ready for Christmas surrounded us, but all this did was add to my unhappiness. All I could foresee in the future was bleakness, hopelessness, unhappiness. I wish I could go back and show you how wrong you were.
Even though the blood work confirmed it, you held on to the hope that the diagnosis was wrong. The final blow came when we had our appointment at the Down Syndrome Center. You held fast to the belief that Dr. Cohen would examine Nick and declare that an error had been made. This did not happen and it was devastating.
You spent almost a year either crying or feeling deep anger – “why did this happen to my child”? I wish that you would have been able to find an active parent group, meet up with other families that had a child with Down syndrome – not even the many pages of Facebook were around then.
Then one day Nick giggled and reached his arms out for you to pick him up – this was the turning point. The dark cloud that you had been living under suddenly lifted and you realized that this was your precious baby and he needed you – to be strong, to fight for him and to protect him.
The road has not always been easy, but it hasn’t been the bleak nightmare that you envisioned. What you didn’t realize was that each and every accomplishment – no matter has big or small – has been celebrated as the gift that it is. When Nick finally drank from a straw, (after years of working on this skill) – the celebration that took place in the middle of Bob Evan’s Restaurant had everybody clapping and congratulating him! Speech continues to be one of his biggest struggles – but every sentence is like Christmas morning. You take absolutely nothing for granted.
What you never imagined during those early days was the unbelievable joy that your son would bring to your family. He has bonded your family in ways that you would never have thought possible. His very presence has brought wonderful people into your lives – therapists, teachers and random people who engaged with Nick at various places. Many of these people have become friends for life.
Nick is now a junior in High School. He has friends in his classroom and is planning on going to the prom. He loves music, dancing, football, hockey and basketball. He works, through school, two days a week. These are all things that you never imagined during those dark days. Self, I wish you could have known some of this when he was a baby. I wish that I could have told you that life was not over – just different. Just keep putting one foot in front of the other and keep taking one day at a time. Just like life is with any kid, not every day is going to be good – but some days are going to be awesome!