EJ was our first child. We were brand new parents and we found out pretty early that there was a chance he could be born with down syndrome. Our doctor was short about it, only leaving a brief message on our answering machine once she found out. We had additional scans done to find out more information and the people at that clinic were equally as cold-hearted about it. I hated seeing the sadness in their eyes. They told us they would help us do whatever we chose. Of course, we knew at that meant. Needless to say, we never went back for any more scans.

         We did our best to push it out of our minds and pray that he was born healthy. Although it was never confirmed that he was going to be born with Down syndrome, the moment that he came out and they placed him on my chest I was 100% sure that he was. The doctor came in and off handily told us and our entire room full of family and friends that he indeed had Down Syndrome. Suddenly the room wasn’t as happy anymore and prayers started being offered up.

         Since we did not know for sure we hadn’t told anyone that it was a possibility. I felt all kinds of mixed up. I was happy that he was here but I was sad for him and all the struggles this meant he was going to have to face. The fears and doubts were all I could see. I pictured the children I remembered from my childhood who hid behind their parents and never spoke or looked up at anyone. This sweet, innocent bundle didn’t deserve that. How hard was it going to be to never accomplish anything, never have friends, never be loved by another person into their old age? I felt broken inside. How could I have done this him? 

         One night I was sitting in the bath tub crying my eyes out. I was thinking through all of my worries, when suddenly I heard a voice I had never heard before. “Stop feeling sorry for yourself! You are wasting time and energy feeling bad about a diagnosis you can’t change! That little baby needs you!!!”…

         …And then all of a sudden everything changed. It was clear that his fate had not been written. We were the keys to making his life all that it could be. I started seeing things differently because I realized my fear was keeping me from allowing myself to appreciate them for what they were.

         First, he was healthy! All we wanted was for him to be healthy and he was. He had no cardiac problems. He had no intestinal problems. We were able to take him right home and he has never once had to spend the night in the hospital since his birth.

         Second, he was strong! At his newborn photo shoot at the hospital, the photographer couldn’t get him to keep his head down on his hands. He kept lifting it up. This is exceptional even for a typical child! To test his strength, I placed him on his belly at three days old and wouldn’t you know it, the little booger flipped over! I did it again, and he did it again!

         Third, he was smart! We knew that if he was going to have trouble cognitively, we should start trying to teach him early. We started him on the ‘My Baby Can Read’ DVDs at 3 months old. He could recognize and read over 150 words by the time he was a year old. Of course, the surprises just keep coming the older he gets. Every doubt I ever thought of has been shattered.

         I worried if he would ever have friends. This one still makes me laugh! EJ is the single most social child I know. He is like a mini-celebrity in our town. Everywhere we go, friends approach him, people say “hi” to him, and everyone smiles at him! He doesn’t have to know you for you to feel like you’ve met someone special. He is caring to others and loves with his whole heart. Children gravitate to him and no matter what their age, he plays with everyone.

         Although I still worry about school, so far he has excelled! He is 8 years old and in 2nd grade. He is in an inclusive classroom and only gets pulled for help in specific areas. The teachers and staff have continually shown that they have high expectations for him. He walks in the halls quietly with his hands behind his back, holds the doors for his peers and is always the first to give you a “please” or a “thank you”.

         This has continued over to extra-curricular activities as well. He is currently active in swim lessons and gymnastics, and is eagerly awaiting the return of basketball and baseball season. He loves taking dance classes and is fantastic at following directions and choreography. Every year you can see his growth, not only physically, but with maturity and ability.

         He has been a true inspiration to this community. Teachers who would’ve never considered taking on a special-needs child are thrilled with every bit of progress he makes. They have seen time and time again just how typical he is. He keeps up with his peers on so many levels. And when he struggles, the children and adults around him come together to help him through it. It’s been truly amazing to be a part of his journey.

         As far as finding the love of his life, I was wrong about that as well. He loves everyone with his whole heart. His brother and sister are his best friends. He brings out love in others because of the love he gives. I have no doubt in my mind that he will make the perfect soul mate for some lucky person out there. You can see it in his eyes when he looks at his best friends. And when he finds that person he will love them with more love then should even be possible to give.

         Your child will grow through the love you pour into them. Praise their strengths and help them with their weaknesses. Have high expectations for them so they will have high expectations for themselves. Surround them and yourself with people who care about them and want to push them to success. This journey is unpredictable, but it has so many more sunny days then cloudy ones. Let that pure soul shine its love on you and you will never need an umbrella.