I vividly remember the moment the pediatrician gently told my husband and I that our newborn was not the picture of health we envisioned. Just hours after her birth, I was resting in the hospital bed dressed in a stylish oversized gown. I was counting down the hours until we were discharged with only normal, first-time parent worries crossing my mind. Then, everything changed. My daughter had characteristics that alarmed the pediatrician. The kind of concerns that may indicate a genetic issue.
I fell apart as this never seemed to be a possibility in my dreamy-eyed, twenty-five year old mind. My husband raced to stand beside my hospital bed. He held me as I asked him, “Is our daughter ok?” Of course, he didn’t know, but he found the strength to give the answer I needed to hear.
The next day, another doctor in a NICU stated all the specific things about my baby that indicated Down syndrome. Stunned by the news, I cried again and asked my husband, “Is our daughter going to be ok?” The question was repeated again after the cardiologist explained her heart defect that would require surgery soon.
When that day came, I tearfully handed my daughter off to the cardiology team for her first open heart surgery. By that time, I had three months of loving my precious daughter. The Down syndrome diagnosis was hard to digest but my love for her was a much more powerful force in our lives. After the surgery, my eyes took in the sight of my daughter looking so frail. I pondered again to my husband, “Is she going to be ok?” By now, he knew the drill with this question and confidently told me everything was going to be fine.
This whole scenario replayed again when she was two years old. Even though we had lived through the surgery process before, I wondered if my sweet daughter was going to survive the whole procedure again. My husband stood by my side providing me the reassurances I needed spoken out loud.
She did well after her surgeries. When her health improved, her development became a central focus in those early years. Different therapists came into our homes and our lives. Sometimes, I got too caught up in milestones, and I worried too much about her future. I wanted answers to questions that only time would give me. I wondered how long certain delays would be in her life. I lamented over the time it took to develop some things, such as her verbal speech. I asked my husband “When will she…” or “Will she ever…” type of questions. He didn’t know but always tried to answer them, knowing I needed someone to share my fears with.
There came a point when my belly started to grow again. Adding another child into our family would change the dynamics. I tried to prepare my daughter for the life event that was going to happen. I was unsure how much she understood as I prepared her for baby brother’s arrival. I asked myself, “Is she going to be ok with this change?” Shortly after my son took his first breaths, his sister was near him. She signed “baby” and “hold.” She loved him from the beginning. I instantly knew things in this part of her life were going to be ok.
As my daughter grew, she brought things into the home to help her stay well. A nebulizer machine for asthma and a bi-pap for obstructive sleep apnea came into our home early on. Inhalers and medications were a daily necessity. After a while, an airway clearance machine and a cough assist machine were added to help with her lung issues. These machines represent different health issues and a long journey into how they came into her life. Each medical intervention was stressful at first. Of course, I had tons of questions, but the heaviest one was “Is she going to be ok?”
It's been 18 years since that first doctor raised questions about my daughter’s health and sent me spiraling into a myriad of questions as well. I didn’t know exactly what Down syndrome would mean personally for my daughter and my family. The books and articles I read gave a context for what may be in our future. However, my daughter is her own unique person. Her story is exactly what it is: her story. There was no preparing for it. There was also no guidebook to provide the answers along the way.
For all the questions I have had over the years, I have had to learn patience. I wanted reassurances over the years that she would be ok and that her life would be good. I had to trust that each new day would bring strength when I was tired and hope when I needed it. I have been blessed to have God help me along the way as I have mothered a child with Down syndrome. I haven’t always had perfect faith, but I had hope that she had a future. I still do. For now, everything is ok.
Evana is a wife and mother of two children. Evana is a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
