Twenty years ago on September 23, 1992 after a very healthy pregnancy, I gave birth to a beautiful 7lb, 13 oz baby boy. We named him Noah and we were very excited to introduce him to his 2 year old brother Nathan. I was especially excited because we now had two boys only two years apart. My husband, Jeff, and I had created our beautiful family. I began envisioning our boys sharing very similar life experiences as they grew up to achieve their dreams together.
Within the first week or so after bringing Noah home, I had an incredibly strong maternal instinct that he wasn’t responding as he should. When I held Noah, he felt “floppy,” like he had low muscle tone. Because we had had our very active, thriving baby Nathan only two years prior, I was able to compare my experiences. I also noticed that Noah had a delayed response to his surroundings and he was not getting the hang of breast feeding. After many tears, we persevered together and he eventually caught on, but it took time –which we now affectionately refer to as “Noah’s time.” But as my worries escalated, I remember sitting in my room holding onto our beautiful baby boy with tears streaming down my face knowing in my heart that something was just not quite the way it should be.
Slowly, I built up the courage to share my thoughts with Jeff, our extended family and friends. While they all tried to reassure me otherwise, they didn’t have my mother’s intuition with her child. I felt very much alone because I knew he was not developing as he should but no one shared my concerns. When Noah was about three months old, I began my mission to investigate our baby’s health. I was after a diagnosis. Many of our family and friends asked me “Why?” “What difference will it make?” I knew a diagnosis would make a huge difference because it would mean support for early intervention which would make all the difference in the world. As a teacher, I was well aware that the first three years of a child’s life are crucial in terms of development, growth and progress. As I moved forward, my Italian Irish heritage kicked into gear. There was no way I was BACKING DOWN. The passion stirred within me was at its peak. I was on a mission to get to find answers. So the journey began……..
After trial and error with doctors, I finally found a doctor who was willing to join the mission to find answers. He listened and agreed to a series of referrals and tests. He wanted to help us find answers to the many questions about Noah’s development and behavior. After a battery of tests and visits with a variety of specialists, we still had no answers. Finally, I suggested testing his chromosomes. To this day, I’m not sure what prompted me to ask for this but I knew they played an important role in our human development and it was really the only solution left for a possible diagnosis. The specialist agreed to test his chromosomes and at 18 months of age we had a diagnosis! Noah was diagnosed with a rare condition (1 in 40,000 births at this time) called Chromosome 18p-. This means he has a deletion on his 18th chromosome on the p end of his chromosome which is known as the shorter end of a chromosome. The doctor suggested that Jeff and I also get tested. Oh how I prayed that one of us had this condition. I figured if one of us had this condition, then perhaps Noah wouldn’t be a Rocket Scientist, but he would be typical. The results found that Jeff and I were not carriers. It was de Novo to Noah meaning, it was new to him, much like Down syndrome – an act of Nature.
Though in a way, my prayers were answered. I prayed to God for a diagnosis. With a diagnosis we could connect to support systems so Noah would have access to the tools and resources he needed to grow to his full potential. As we continue this journey, I have become a very strong advocate for Noah. When we first started out, I didn’t feel I was prepared for this journey but I knew I had to embrace it and be willing to face what lay ahead of us as a family. In order to become a strong advocate for Noah, I had to overcome my shy, quiet manner and become more outspoken and perhaps even a pain in the ass, to put it bluntly. I knew it was my job as Noah’s mother to be his voice and his advocate until he was able to take on this role himself. With Noah as the beacon of my courage, I was determined not to back down no matter how many people stepped in our path. I figured, this little voice in my head had brought me this far and I was going to let it continue to lead me in the direction to best serve Noah.
But in the midst of all the pushing and prodding, my emotions raced like a roller coaster. Was I absolutely devastated to find out that my son was not typical and would never be? You bet. Has it been exhausting? Absolutely. Was I angry? Did I cry and feel sad for myself and him? Was I discouraged at times and totally overwhelmed? Did I feel I would never be in a happy space again? Yes to all of the above. There were times when I wanted to crawl in a hole and not surface for weeks. I felt such a sense of loss, not only for me but for my husband and his brother. Sometimes I feared my marriage would not survive this. And I questioned God as to why me/us/him.
Today, I still worry about Noah’s future but I’m in a happy peaceful space now, one that I never thought I would be in after this heart wrenching diagnosis. I would not change a thing – if God approached me tomorrow and told me that he would wipe away all of my past sad feelings, difficult times and the barriers we face daily, I WOULD NOT allow this! For me, the mission to find a diagnosis and all that we have accomplished on this journey with Noah has brought many blessings to our life. This journey has instilled a sense of pride – in me, for finding the strength and courage to challenge doctors to find a diagnosis; in my husband, Jeff, for becoming such a patient and thoughtful father; and, in our son, Nathan, for opening his heart to love his brother unconditionally. But most importantly, I am so proud of Noah for all that he has achieved. He has given our family so much more. There have been moments when I have felt discouraged or sad but Noah has brought a ray of hope and an unsuspected strength for the tear in my eyes and the ache in my heart.
I have an indescribable heart full of love for my very special child who has special needs. Noah is now a 20 year old gentle and kind person. While we didn’t realize it when we chose his name, the name Noah actually means gentle and kind. He couldn’t have a name to better describe him. Gentle and kind are the two words that best capture his personality. He loves life and he is happy every day. He would never say a bad thing about a person, no matter how difficult the personality. He always sees the good in everyone and everything. He lives life to the fullest. Everything that he has wanted to achieve he has on his own time. He has so much more that he wants to achieve in life. He has a strong desire to learn more and more each day and he sets out doing this daily. Noah will achieve everything he wants to in life on “Noah’s time.” He plays the piano. He’s passionate about baseball and hockey. He can rhyme off stats of his favourite sports and players. He rides his bike everywhere. He loves to read and play games. He is an excellent Euchre player, he enjoys travelling and exploring. Noah is very active in Special Olympics and participates on the floor hockey, basketball, bowling, soccer and on the track team.
Noah has a great sense of humour which keeps us laughing every day. On Christmas Eve, it has become a tradition for our family to celebrate with two other families. All of the children were raised together, so they refer to one another as cousins. At these family gatherings, Noah assumes the role of Santa. Everyone must sit patiently around the tree as he pulls out each gift. With a mischievous grin, he’ll dangle a parcel in front someone only to pull it back at the last minute and pass it to someone else. Over the years, we have all learned to settle down and enjoy the presentations, knowing it will happen on Noah’s time. During these few hours, something magical happens. Not only does he become the star of the show, together with his quick wit and teasing, his methodical approach encourages everyone else to slow down too. It’s a role he looks forward to every year and no one would ever dream of suggesting anyone else for the job!
Noah has brought remarkable people into our lives. One of the best parts about this incredible journey is the extended family we now have through the Chromosome 18 Registry & Research Society. We discovered this organization when Noah was only two years old. Headquartered in San Antonio, Texas, this organization consists of a very unique group of international people who are doctors, researchers, brothers, sisters and parents of children with Chromosome 18. Their strength and support embraced our family when I felt most vulnerable about Noah’s future. Every year, we are blessed to reconnect with our Chromosome 18 family and friends. There is such a sense of belonging and love with this extended family. Noah has grown up with many of these children. While they live with their families all over the world, they communicate often through email and Facebook. I thank God every day for this organization. And I am so proud that we are working together to provide answers to the medical field and, most importantly, to individuals who have been diagnosed with Chromosome 18.
I give thanks every day for the gift of Noah in our lives. I am so blessed to be his mother. He has enlightened our lives in ways I never imagined. He truly is our Earth Angel.
Natalie Banton has over 25 years of experience as a teacher. For the last 10 years, she has worked with students who have hearing loss. Natalie lives in Oakville, Ontario with her husband, Jeff, and two sons Nathan and Noah.