After giving birth to 3 amazing daughters and experiencing our share of loss in between, even the doctor was pleasantly surprised when we realized our fourth addition was going to be a boy. I was excited for my husband to have a son with whom he could share that special father-son bond. I was also excited for myself. See, there is a little known secret that mothers love having sons. Mothers of sons know that there is a love that only a son can give. That love is a protection; it is a security.
Following his birth, Nathan and I spent a lot of time together in the NICU. Although I had never been able to carry a tune, as we sat together in the hospital room one day, I began to sing to my little boy. As my voice reached his little ears, I began to hear the choir of NICU mothers singing the same soft tune. It was then that I knew I would never be alone on this journey.
As you can imagine, I was busy during those next few months. In fact, it wasn’t until after Nathan’s first birthday that someone had the courage to tell me how he entered the world and about the effort it took to bring color to Nathan’s gray body.
Nathan was different than his sisters. I had to set the timer to feed him. I had to learn how to navigate daily life with a heart monitor and oxygen tank. But he was still the perfect fit for his family.
As the years passed, we journeyed through many diagnoses, something we chose to see as badges of courage. In his first few years of life, Nathan was diagnosed with brain damage and autism. He spent countless hours learning the simplest of words. He had to learn how to tolerate a world that was assaulting and threatening.
Then baby brother joined our family. When Chase was born, it was more of a relief than a celebration. He arrived safe and healthy on Father’s Day but our celebration was short lived. Six weeks later, seizures began and epilepsy became part of our lives.
When you have a child with a disability, each day is a day of firsts. Some days make your heart swell and some cause tears to burst from your eyes. After three years of searching for the correct diagnosis, Chase began treatment for his seizures.
That first night is forever etched in my mind. I remember waking up at 2am, crippled with fear that I had lost my youngest during the night. You see, Chase had not slept over 25 minutes at a time for as long as I could remember. It was now 2am and as I dragged my body to his room, weak with fear, I heard the beautiful sound of a snoring baby boy coming from his room.
Nathan and Chase. Two brothers. Three years apart. Silent partners, both living with autism. My little men. That is who they are but that is only part of their story.
Our home is our sanctuary but we don’t hide. As tempting as it may have been those first years, we left the safety of our sanctuary and became part of our community.
My heart aches for those who feel rejected or not welcome in society; for those who become isolated but not by choice. From day one we didn’t act different or like we didn’t belong. Sure we left early if we were too much of a distraction or it became obvious we had made a mistake and pushed past our limits. But through our experiences, we learned so much about people. Most were kind, many were curious, and few were harsh. We learned not to give negativity a chance by acknowledging condescending eyes, always spoke in terms of strengths and were not guarded in teaching people about the boys’ accomplishments, as well as their diagnoses.
When people see the love of our family, they see the boys as we do.
Just as our family found a foundation of success in therapy, recreation, the arts, and in school, a new challenge presented itself.
At seven years old Nathan suddenly went from speaking in short sentences and taking spelling tests to losing his language and cognitive gains. We worked for years to find what we believe to be the cause but we still search, every day, in hopes of finding more of the words that he lost.
Every member of our family has walked through this journey in his or her own way. But, as a family, we hold on to what we know: excitement, faith, hope, love, and Disney World.
Nathan loves being a teenager and spreading his wings. Today his heart is good, his hip is healed, his eye is straight, and he is finally growing. However, I often wonder if he knows he is just at the beginning of his journey. He still struggles each day to find words that have come and gone. He still struggles with not succumbing to the comfort of isolation. He still wears some battle scars. But just when I think he can’t do any more, he flashes a smile, tells me what he needs, and off we go.
Chase cannot comprehend that differences are not always celebrated but he certainly intuitively celebrates them. For example, right now he wants to learn sign language so he can speak like his friend. His strengths have been nurtured and he has an entrepreneurial spirit. He is a protector of his big brother and carries this self-placed mantle with pride.
These boys live an amazing life, full of challenges and adventure, and survive on strength and love. Sure, there are a few pit stops along the way but instead of focusing on the destination, which remains unknown to us at this point, we are learning to focus on the beauty of the journey.
If I could leave readers with a final thought, it would be not to hide. Give your community a chance to connect with your family. If you can connect, everyone will benefit. If not, keep moving and enjoy the ride.
Elizabeth's Story Brought to you by
Abilities First believes that by ensuring that people have opportunities to use their abilities, we can make our community better for everyone. Abilities First uses public and private funds to support the choices of individuals with developmental disabilities in Greene County to live, work, play, be active, and productive in meaningful ways for our community. For more information about Abilities First and its programs, go to www.abilitiesfirst.net or call 417-886-0404.
Abilities First operates programs which support and create community opportunities including support coordination for people with developmental disabilities of all ages through First Steps (birth – 3 years) and The Next Step (3 years – over). Art Inspired Academy provides an inclusive experience for people with and without disabilities to participate in creative arts like theater, music, dance, and art. Abilities First has two retail businesses: Inspired Boutique is an upscale resale shop featuring women’s clothing, accessories, furniture, and antiques, and Art Inspired, a retail store and gallery highlighting furniture and home décor items created from recycled paper and artwork from visiting artists and Academy students. Both stores offer competitive job opportunities in inclusive work environment.