“His back began to arch and his arms and upper body continued further and further until, there it was… a crescent moon.”
The sun was shining through the large windows in my baby boy’s room. I could feel the warmth on my back as I unsnapped Zachary’s sky blue sleeper. A tiny cry came out of his barely 5 pound body as I pulled his legs out. I moved quickly to change his diaper as he shivered from head to toe. Phew…got his diaper on just in time. No accidents this time. I went to put his legs back in his sleeper, Zachary began to reach up in a full body stretch. As I watched him and his little body, I realized how much love I held for him. I rolled Zachary to one side and paused with one hand on his body. He began stretching again and this time his legs went further and further behind his back. His back began to arch and his arms and upper body continued further and further until, there it was… a crescent moon.
Zachary’s body looked like the Cheshire Cat’s smile from the movie, Alice in Wonderland. It was then that I knew, more than ever, that there was something incredibly unique about my son. I thought this isn’t ‘normal’ and in the days, months and years to come, I discovered my dislike of the generalized word or concept of ‘normal’ being used to describe any human being.
At two months old, Zachary’s genetic testing showed three chromosomes in the 21st pair. Trisomy 21. What is commonly known as down syndrome. His extra chromosome is what contributes to his flexibility. Today, at 22 years old, he’s still able to do a crescent moon. In fact, it’s actually one of the many tools that centers him.
“There was nothing wrong with Zachary, he was normal, like all of us.”
We sat with our families to talk with them about the results of his testing and the unending list of questions began. “Is there a cure for his diagnosis?” “Will he ever talk normal?” “How will he survive and take care of himself?” Those questions were never anything that crossed my mind.
There was nothing wrong with Zachary, he was normal, like all of us. I guess I was more worried about how others would treat him, physically and emotionally. We like to believe this world is made of compassionate, inclusive human beings. However, we all know that isn’t always the case.
Throughout this journey, we have encountered people who haven’t understood our perspective and expectations. For example, the highly acclaimed specialist that we were referred to after Zachary’s diagnosis. He told me “Don’t have any expectations for your son.” And to him I say, “Thank you.” It was the exact push I needed to commit to provide him with a ‘normal’ life that any child deserves.
So, I began to devour every possible article, book or reading material I could find to learn as much as I could about down syndrome. I knew so little and that terrified me. With any child, milestones happen when they happen. When the child is ready. Whether they have down syndrome or not. Teaching them boundaries, consequences, communication and expectations should be the same across the board. I leaned on my cultural foundation and spiritual teachings to provide me with comfort and purpose. We believe Zachary is closer to the Creator and the spirit world. As his mom, it would be my job to honor that. I needed to provide a safe place for him to learn and grow, as I would do the same watching him throughout his life.
Over time, as Zachary has grown older, he has found security in those life skills. Like with anyone else, his expectations and responsibilities have evolved and guide him. I will continue to have expectations for Zachary and encourage him to feel confident in what he expects of himself, as a human being. In the times that he struggles to have a voice, I encourage him in finding it. When he feels discouraged, I support him as he rebuilds the platform to regain his strength.
“It was the beginning of the many opportunities that would come our way.”
In my training as an educator, I was taught many of the necessary skills and tools to navigate the special education system. When we would meet with schools the feeling of being undervalued and less than as a partner, through Zachary’s educational journey, was unbearable. They constantly doubted my understanding of Zachary’s diagnostic testing results and knowledge in the teaching tools they utilized. My questions were seen as opposition and to say the least, this was beyond frustrating. It was my understanding of the processes and laws regarding my rights as a parent of a special needs child, that were huge benefit to me during those times. My personal journey in education had prepared me and I was grateful. It was the beginning of the many opportunities that would come our way.
We found that solid partnerships and authentic relationships are what have helped us along the way (remember, social media was pretty much nonexistent.) It was all the amazing teachers, staff, mentors and friends who supported us that made all the difference in Zachary’s upbringing. I believe it’s important to find strong connections, as it makes everything in life bearable. They remind you that you are not alone. They are the relief that nothing else can compare to and they are the silver lining in the darkest of storms.
“…what I call, my roommate for life.”
As you can see, the past two decades haven’t always been easy. But, joyful memories, heavy heartaches, exhausting days (for both of us) and celebrations filled with love are what have led us to this wonderful life we live. I realize why my amazing son, Zachary was placed on my path. I was meant to face those challenges, on his behalf, with my gift of positivity and patience. We have pushed through obstacles and encouraged people to dive deeper into the conversations, solutions and creative ideas to benefit the many children to come. Today, I can say, I have found gratitude for each breath we take, each step on our paths and the opportunity to walk alongside of what I call, my roommate for life.