Our daughter’s birth was a joyous occasion as she was ushered into this world without any complications. As far as we knew, we had a healthy second baby with a bright future ahead. Yet, at four months, she wasn’t meeting the milestones she should have been and doctors began to show growing concern. After recommended testing, we were told crushing news. Our daughter showed signs of mysterious brain damage that must have happened while in the womb. There was immediate medical concern for her life as doctors were in the dark as to any specific cause. The best they could offer was a prognosis that she would likely never walk or talk and we would have to continue living with the uncertainty of her condition until testing could identify the reason.
With such weighty news, my husband and I were filled with endless questions of which no one had any answers. We lived in the mystery day to day, grieving in different ways and at different times. The stress, uncertainty, financial strain, and worry took a toll on us as a couple. We had read the statistics and most marriages with special needs children had the tendency to unravel. How would ours survive? We knew we could very well be entering the most difficult year of our marriage yet.
In response to our new normal, we carried different responsibilities. My husband had the heavier burden of provision as the medical costs were adding up. Yet, in the day to day, his life still looked somewhat the same; he went to work, interacted with others and carried on some sort of typical life. I encountered drastic change, however, having to quit my job to stay at home with our daughter. I was cut off from the outside world, except for doctors and therapists, of whom seemed to be limited sources of friendship and comfort. Hospitals were my new stomping grounds, and I found them emotionally depleting. I went from being a confident conversationalist and carefree social butterfly to a recluse who lived solely to meet my daughter’s overwhelming needs while maintaining peace in the home for the rest of the family. With all the time and effort it was taking each of us to keep our family afloat, our lives seemed to be going in two different directions.
We realized the need to make intentional effort in realigning ourselves for we were in fact working for the same cause. This initiative was introduced very simply through practical family calendar meetings once a week.
We considered this a small attempt to proactively manage our stress and take back our marriage in the day to day.
We had enough uncertainty to carry with our daughter’s condition. Therefore, why not try to alleviate any additional strain in the areas of our life that we could?
Through this intentional communication each Sunday night, our weeks began looking less daunting and we started feeling unified and better prepared. My husband became much more aware of the care and investment our daughter needed each week; while I better understood responsibilities and obligations he was carrying. These simple scheduling meetings evolved into precious times of listening, supporting, and just “being” together.
In spite of all the challenges and heartache in raising a child with special needs, it has also brought about the best in us and our marriage. It has, certainly, taken time to work through the denial, adjust to our new reality and accept our separate roles. Rather than falling into the temptation of retreating into ourselves, we eventually have learned how to communicate and work as a team more effectively. Through the grueling days, my husband and I continue to stay committed, reminding each other, “We can either let this break us… or make us. ” Each time we choose to cling in hope and faith to the latter.