Matt, You Make Me Better

The moment I heard the words “We think your baby has Down syndrome” my heart stopped. It was 2 am, and I had given birth to my beautiful baby boy three hours earlier. Tired from a long day of doing my thing to bring him into this world, my husband and I were trying to get some rest when the on-call pediatrician came into our room carrying our newborn son. As my new mommy instincts began to assess the situation, I knew almost immediately she was about to shatter my world. This was thirty-three years ago. I was young, just twenty-three years old. Back then, we had very little exposure to people with Down syndrome. What I knew was they were intellectually impaired, and they looked different. This was enough information for me to know that I did not want this for me, my baby, or my family. I didn’t want a baby that was going to be different.

This was how my journey into motherhood began. Consumed with emotions of sadness, fear, anger, hopelessness, helplessness, grief, and confusion. I had no idea what I was experiencing was normal…that I was not alone in this initial reaction. I worried that my beautiful baby wouldn’t live a good or productive life. I worried he wouldn’t be accepted or have friends, and that society would see him as undervalued. I worried my life was going to be hard. I’m happy to report, that these things weren’t true…except for the hard part, but who doesn’t have hard in their life?

Born three weeks early, my baby had to stay in the NICU so we chose to rent the hospital room to stay near him. When possible, the nurses would bring him to me so that we could spend time together, to create our bond. I spent those days searching for his imperfections. I could see the features that had been pointed out, but as I stared into his eyes, his soul, I could only see a beautiful innocent baby and he was mine. How could someone so beautiful not have value? It didn’t take long for my baby boy and his extra chromosome to dance their way into my heart.

By the time we left the hospital, I made promises to myself and my baby. My son would not be a statistic. His life would matter, and I was determined to prove it. He would get an education, drive, date, work, and even marry. Some of these things came true. I haven’t given Matt a ‘free pass’ because he has an extra chromosome. I’ve encouraged him to try things to help him reach his greatest potential. We talk to him and treat him like any other child/adult. I wanted my son to be seen for his abilities, not his disability.

But just like you or I, every person with Down syndrome is different. They are all unique and amazing in their own way. Through the years, our dreams and goals have had to shift for Matt, but we have just redirected them to better suit him as he developed into his incredible self. Still, he has exceeded my expectations.

My son loves to read, and write and is an avid bowler. His highest score is a 193 and that’s without bumpers. He loves music and movies and can recite lyrics and lines from both. He has a green belt in Kenpo Karate, which is two belts away from a black belt. He earned this in a typical adult karate class. He loves to travel! His favorite place is Disneyland. He loves to attend plays and concerts and dress up and go to Comic Con/Fan X. He’s even married…to Katy Perry. Just ask him. But he has challenges too. We get creative and work through them as they come up.

A year ago this month, I braved the big world of writing and publishing a book about our journey. My reason for doing this initially was to help any parents who may be experiencing a beginning the way I did. I wanted to be a glimpse into the future of the amazing life they are in for. Perhaps the most surprising of all of my son’s accomplishments is having him sitting next to me at each of our book signings sharing his experience in our journey. He makes me beam as he entertains families who come from all over to meet him. These are families looking for hope for their little ones who will one day be reaching their own milestones. Hope that I needed all those years ago.

The day I became a mom, I became a student, teacher, advocate, and warrior. While I wouldn’t have chosen this journey, I’m glad it was chosen for me because my life has been changed and so have the lives of every person my son interacts with. He is showing society that Down syndrome is nothing to fear. That his life has value. Through these amazing individuals, we can all become better just by having them in our lives.

My son is my hero, and I wouldn’t change one thing about this amazing, hard, rewarding life! He has taught me to appreciate my abilities, to be kinder and more compassionate, and to live each day to the fullest. His extra chromosome rewrote my story and now I’m on a journey to preserve his.