I met the first eternal love of my life on a July afternoon fourteen years ago. My lifetime dream of becoming a mother was fulfilled as my doctor handed my beautiful son into my waiting arms. It was love at first sight as I gazed into his crystal blue eyes and his tiny hand clutched my finger. I had no idea just how much the human heart could expand to accommodate a child, but he filled every inch of it; and, from that moment, my son and I began an amazing journey together.
Just as I had never before experienced the depth of love that motherhood can inspire, I also never imagined the strength I would need to survive our first five years together. He began to struggle to survive within the first three days of life because he couldn’t physically control his mouth to eat from either bottle or breast. We were already prepared for the fact that he would be born with clubfoot deformity (as seen on my 20-week ultrasound); but, the struggle was just beginning!
The first years of his life were spent visiting an army of specialists. He struggled to consume proper nutrition, he was allergic to everything, he endured casting and surgeries on his tiny feet, his eyes were not properly focusing or tracking objects, and for unknown reasons, his beautiful face remained frozen like a mask absent of expression. I poured my every ounce of energy into seeking every possible kind of intervention to help him and to answer my many questions about what was wrong and what to do for him.
The nights were agonizing. I barely slept the first three years, either because he needed me, or because I was tormented by fears. Would he ever walk? Would he ever talk? Could he have a “normal” life? Would his peers accept and be kind to him?
My prayers and questions slowly began to be answered as a diagnosis was finally given (Moebius Syndrome), and he began to flourish. Every milestone lagged far behind the typical guidelines; but, when he finally walked, my heart burst with joy! When he finally started to talk, he never stopped! Now, my son is an 8th grade honor student in advanced placement classes who will be in his first play next weekend, is training to be a 4H camp counselor this summer, and who continues to fill my heart with gratitude and joy with his gentle spirit and amazing sense of humor!
My son started me on the first path of my life that made me feel like I had a real purpose and could make a difference in the world.
My son started me on the first path of my life that made me feel like I had a real purpose and could make a difference in the world. It started with him and trying to do everything in my power to learn about his needs and help him fulfill his potential. In doing so, he helped me to fulfill mine! I first became involved in Early Intervention and social services because of him. I didn’t want any other parent to feel as desperate and hopeless as I once had. Because of my son, I went back to school and completely switched gears in my career to help other children with developmental disabilities.
About the time I found my strength and direction, my marriage fell apart. It is not uncommon for parents of special needs children to suffer higher rates of divorce, rates are reported to be as much as 80% for parents of children with disabilities. It’s not my son’s fault, and I wouldn’t change a thing; but, the emotional, physical, and financial drain caused by disability can be devastating to a marriage.
My son was six when his father and I finally decided to throw in the towel on our marriage. It was a terrible chapter in all our lives; but, I was convinced that both my ex and I could be happier individuals, therefore better parents to our two children away from each other.
For the first time in my relationship with my son, he pulled away from me. He was angry, confused, and blamed me for everything. It was excruciating to watch the little boy whom I agonized over and nurtured night-after-night lock himself in his bedroom to avoid me and scream at me in pain. We had already survived so much, and I didn’t know how much more any of us could take. Just as I never gave up when fighting for his survival and each step of development when he was younger, I relentlessly kept reaching out to him, talking to him, and soothing the wounds.
He needed to hear, over and over, that he was not expected to take sides in the divorce. He needed me to assure him that I fully supported him to have a full and loving relationship with his father, and wanted him to be happy wherever he was. He felt torn by loyalty binds and grief over the loss of his parent’s marriage; but, little by little he understood that I meant what I said. He was relieved to remove the pressure and pain, and he became himself again.
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Eight years later, my son and I share a beautiful relationship, and the chaos of the divorce is well behind us. We have long discussions about all genres of music, books, movies, and life. We were both broken by the divorce, but have since found unimaginable peace, strength, and motivation to carry on! We are both survivors!
Soon, he will make his own path and go out in the world to fulfill his own dreams. I have had a resurgence of worry from the early days.
Although my son has managed incredible things in his life, he still has major obstacles to overcome to be completely independent. Because of the facial paralysis he experiences from his disorder, he has very limited control over the movement of his face. He cannot smile or produce any form of facial expression, which makes speech and social interactions very challenging for him.
Because his eyes cannot move side-to-side, we have yet to determine whether he will be able to drive without special supports. His lack of eye movement has also made fine motor skills, such as writing, extremely difficult for him. I know he will need a unique (and often technological) approach to everything from ordering a pizza to filling out a job application.
I am convinced that there’s nothing either of us can’t do, with enough determination.
We will continue to draw strength and support from each other. I am convinced that there’s nothing either of us can’t do, with enough determination. He has never stopped or let his disability stop him from living a full and beautiful life. In honor of him, I won’t let my challenges, including divorce, prevent me from doing the very best with what I have, either!
Our paths will continue to curve and flow along the journey we take side-by-side. We have become strong and independent with and through one another. He has given me reason to remain strong and keep growing, even when I feel weak and full of doubt. I will continue to share all the strength and support with him that I possibly can to help him continue to be the person he wants to be. No doubt, he will never fail to inspire me to never give up and fully embrace life!
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