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by Nicole Hopkins (Illinois)
May 2017

Olivia, smiling, sits in a swingHi, my name is Nicole, and I’m a first-time parent and I’m still learning to be a parent through some extraordinary circumstances with my daughter, Olivia. My husband and I were already nervous and clueless when we were sent home with our daughter, but we knew that something was not right about her health. She was born underweight at 4 lbs 10 ounces, but after six months she only had gained two pounds. It was concerning to me because Olivia was always hungry and unhappy. She also was not meeting any of her milestones. We went through different types of formulas, bottles, nipples, and baby food concoctions and she still wouldn’t gain weight. Our frustration began when we realized my daughter’s healthcare providers were totally clueless and negligent in regard to her care and were not taking my daughter’s health seriously. Being in the military, it was really hard to maintain my professionalism and be a parent. When I wore the uniform, I always respected higher-ranking officials and their professional experience, but how could I respect someone who was supposed to be qualified to take care of lives and didn’t care for the life that was in front of them? I knew the consequences of getting out of line: I would be reprimanded. I would get in trouble for being a “parent.”

Luckily, with calming persistence we were approved to have a second opinion and sent off to have a 48-hour evaluation by a feeding team that consisted of non-military doctors. All the doctors were sitting at a table and Olivia and I sitting in front of them like we’re about to audition for some part…Not even five minutes into my background about Olivia, the doctors wanted her immediately hospitalized. As the admission process started, the team of doctors started mentioning a list of conditions she had just by looking at her: hypertonia, developmental delay, visual impairment, seizures, and so forth. Although I was scared by what they were telling me, I was also relieved to know that I wasn’t being a paranoid mother. During our three-month hospital stay, Olivia endured some big surgeries. I really thought her little body (still at six pounds) couldn’t handle all the pain. She proved me wrong and was a fighter through everything, but I was beyond heartbroken and disappointed in myself, allowing her to go through this. I kept blaming myself and felt like I was being punished for being an unprepared mother. She no longer was considered “normal” and we no longer would have a normal life.

Olivia, in pink glasses, leans back in a cushioned chairSince my husband and I were both in the military, we led an unstable home life. We worked different shifts and faced the possibility of deployment, plus we lived nowhere near family and didn’t really have the friends or resources to understand what kind of help we needed. So I made the decision to separate from the military to be more available for Olivia. I was kicking and screaming inside and having second thoughts because I really didn’t want to do this. Anger just filled my heart because I was giving up something I built and loved for something I loved. I grew jealous of my husband—I had just given up a ten-year career and he got to still carry on with his life while I stayed at home and took care of everything else. Our lives became a routine and time became a currency. You learn to value the minutes in a day. I would have thought there would be some relief in venting my stress, exhaustion, and bad experiences, but I learned there’s no point conveying negativity to others about your life and child. I never wanted pity; I just wanted us to be included in society.

Olivia lies on a bed with a big smile. A cat lies on a pillow above her head.My life completely focused on Olivia’s care; I began to learn medical terminology, IEP dos and don’ts, the TEFRA process, etc. I also learned that even though doctors, therapists, and teachers are very educated and trained to work with children with special needs, my knowledge of my child is sometimes more valuable than theirs. Our experience through the healthcare systems has had its ups and downs (more downs), but I’ve learned to take the negatives and turn them into a lesson so they’ll never happen again. The system looks at Olivia as her list of diagnoses and fails to acknowledge the big picture. She is still a child, a little girl, and my little girl. She is a sassy, stubborn, funny, and adorable six-year-old who takes after her parents.

Every now and then I get lost in the everyday shuffle of Olivia’s needs and forget to appreciate the small things (she is happy). Although Olivia cannot verbally say what she needs or how she feels, she puts forth the effort of communicating through touch and sounds. I treat it like our own secret language with each other. I know that she is aware that I love her dearly. I just hope she has the chance to (visually) see it, but we cannot predict nor control what will happen in her future. We will just go with the flow, and as her Mother I will be by her side.

OUR MISSION:  NFADB exists to empower the voices of families with individuals who are DeafBlind and advocate for their unique needs.


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