Before Suzanne’s baby was even born, she knew her life as his mother was going to be complicated. She would bravely face fears, confront rudeness, and surround this little guy she was carrying with love…but none of it would be easy. At the end of her pregnancy, she was told that her baby wasn’t measuring properly and was missing a kidney. She knew he’d get a diagnosis of some sort, but the answers weren’t clear until Noah was almost a month old.
I’m sure that was an excruciating wait, but at the same time Suzanne knew that this was a fight she would not be in alone. Her family provided support and encouragement with every new worry or question. Suzanne’s mother stayed in the hospital, always by Noah’s side except when she was stopping by Suzanne’s room to give her updates. Suzanne’s husband and stepson, Brandon and Tanner, also demonstrate consistent love. After all, there’s nothing like having a big brother for Noah to look up to and strive to be like to bring home the notion that Suzanne’s not alone in life. From the beginning, though, perhaps her biggest supporter, certainly the reason she fakes strong even when she’s not feeling it, is Noah. Every time she held him as an infant she was conscious of his fierce grip on her finger which she took to mean he had a strong will for life too. Noah still hugs her with all his might and reinforces their bond and her desire to see her son live a life that is as healthy and happy as it can be.
Suzanne also recognized steps in her life’s path that had brought her to this spot, being Noah’s mom. The summer after graduating with her Bachelor’s degree, Suzanne wanted to travel and needed a summer job. She accepted a position at a camp for kids and adults with disabilities in a different state. She figured she’d enjoy a warm summer and then continue on to a Master’s degree program. However, it was a summer that changed her life and four years later, after giving birth to Noah, Suzanne, “Was still floored by the knowledge of the change my life was taking, but I felt much more prepared than I would have been had I pursued that MFA and I truly felt that it all made since and that God laid out this path for me and I choose to take it and it lead me to him. My Noah.”
And what path have Suzanne and Noah been walking together for nine years? Noah was diagnosed with 18p Deletion Syndrome, or 18p-, which effects only one in 50,000 children. When I looked into this a little bit, I was surprised to realize that the 18th chromosome can deform in many ways, leading to several different diagnoses – all with different struggles and outcomes. In Noah’s case, he has had four surgeries (including brain surgery), with the first at only six months old. He struggles with loud noises and crowds, experiences anxiety, and doesn’t adapt well to change. Noah is also very curious and active. “Play is his thing. He has gross motor and fine motor delay, yet runs without care and jumps right up after a fall.” He is so full of joy and love – and how could Suzanne not be inspired by that?
When the doctors first told Suzanne that her son would have a diagnosis, she felt fear. Later, when Noah’s bloodwork showed he had 18p-, she felt more fear. And still, fear is a prevalent emotion in her life. As anyone with children knows, our hopes and dreams for their futures can lead to anxiety. We want the absolute best for them. Suzanne’s experience is compounded with the worries that come with physical ailments, feeling the need to be strong for her son, and not really knowing what Noah’s future holds. Will he be picked on? Will he need further surgeries? Will he be able to live alone? Sometimes it seems overwhelming, but, “We have an amazing support system of friends and family that we spend time with. We limit large functions, but we often have playdates with cousins or dinner with friends and grandparents. We are blessed by the precious village surrounding us.”
In the recent years, Suzanne has learned that her fears of the unknown and desires to be everything for her son need to be balanced with self-care and love for herself. “I realize now the importance of doing things that nourish my soul. Like spending time with close friends, reading, getting a massage, and writing. I see first-hand that when I invest in myself I am a better Mother, a better Wife and just a better person in general.” Suzanne depends on Brandon to help get that all important time for herself. He doesn’t mind the time with the boys and it really is little things, like making sure your wife has a moment of peace to nibble chocolate, that make for a happy marriage.
Suzanne, Brandon, Tanner, and Noah do what they can to find support specific to their 18p- journey, too. Since it isn’t a common disorder, they’ve learned right alongside Noah’s doctors. There is an online support system for 18p- and other abnormalities with the 18th chromosome. And this summer, they’ll be attending their first conference and meeting other families on this path, other adults and children with 18p-. They’ll get to see first-hand if kids with the same shortened chromosome have the same love of quiet nature that Noah does. Suzanne will get to hug other parents who have the same anxieties and fears she does. I’m excited for them!
Suzanne’s excited too – not only about the conference, but about her future and Noah’s. You can hear it in her words. “People often say, ‘I don’t know how you do it.’ You just do and you would too. I wasn’t born with any superpowers. I am a Mother like any other. He is my son. And he is the most precious and lovable little guy around. He teaches me to live with grace and to enjoy the love we surround each other with.”
Her life may be complicated. She may face unanswered questions about her future. But she’s putting one foot in front of the other – sometimes confidently, sometimes with the support of her family and friends, her village. Perhaps the grace Suzanne thinks is learned from her son is truly a reflection of her own poised and polished strength in him.
To learn more about Suzanne and Noah, visit her blog at www.assnugasabug.wordpress.com.
You can fine more information about 18p Deletion Syndrome at www.Chromosome18.org.