When we make the decision to have children, we often fantasize of all the milestones, birthdays, graduations, weddings, and grandchildren that come with being a parent. I don’t think anyone ever dreams of being a parent/caregiver to a child with special needs. At least I didn’t. When my twins were born prematurely at 24 weeks gestation, I started a journey (at times more like a nightmare) that I wasn’t prepared for. I wasn’t prepared for the alarms, machines, surgeries, blood transfusions, infections, diagnoses, the appointments, the therapies, the worrying, the not knowing, and the pain of mourning my dreams for my babies.
After going through the initial shock and overwhelming gut-wrenching pain of my sons’ diagnoses, I allowed myself to take a deep breath. I put my game face on and made a promise to my children that they will have the best quality of life that I can give to them.
I was determined not to crumble but instead stand tall and be the advocate my children deserved. I started researching the diagnoses (Cystic Fibrosis, Cerebral Palsy, Intracranial Hemorrhage, Hydrocephalus, Cortical Visual Impairment, Auditory Neuropathy, Chronic Lung Disease, Developmental Delay, Status Seizures, Complex Partial Seizures, Tracheomalacia, Vocal Cord Paralysis, and the list goes on) and became very proactive in who treated my children.
I had to come to the realization that there are not “fixes” for these diagnoses. I could not heal my babies. That fueled my determination and motivated me to find the best physicians and therapists for my children, even if that meant driving hours away or at times flying across the East Coast to ensure I am doing exactly what is needed to properly care for them. After all, they did not come with caregiving manuals. As physicians retire and the boys get older, people change, so this isn’t a process that ends. The research, the networking, the discussions will go on for their entire lives.
As a mother of children with special needs, my determination comes with greater rewards and consequences, which is why it is so important that I allow myself to ask questions and feel comfortable with the medical professionals on our “team.” I have to be strong enough to keep my head up even during those times when I feel like throwing my hands up in desperation. My determination has given me strength to educate myself, along with thousands of others, about my sons, their diagnoses, the treatment available, as well as how to be an effective advocate for their children with special needs.
I believe my determination has rubbed off onto my boys, as they are two of the most resilient people I have ever known. At four years old, they both work very hard to do things we often take for granted, like breathing, seeing, hearing, walking, talking, and eating. If I listened to every physician, therapist, parent, and stranger who has come into my life since my sons were born in 2010, my boys would not be here. I refused to give up on them. I refused to give up on myself. I continuously educate their older brother on how important it is to care for them when he gets older because they will need him. Mind you, he has his own special needs, specifically high functioning autism. But he loves his brothers so much and enjoys being around them. I educate my family on how to care for my boys in the event that anything happens to me. I need to know they will be given the same level of care and that their needs will be met appropriately.
I have taken a lot of pride in how much I have grown as a person since my sons were born. I went from having little to no medical knowledge to being able to “school” seasoned physicians and therapists on new treatment methods and medications. Having my twins and going through that journey also helped me emotionally when their brother was diagnosed with Autism. In additional to working full-time and taking care of my three boys, I am on a family advisory committee at our local children’s hospital that helps parents find their voices (advocacy) when their children are inpatient. I also speak at a local Exceptional Children’s conference each year (since 2012) on different therapy methods for children who are deaf/blind.
Many parents do go to a place of hopelessness and helplessness, and it is okay to be sad, frustrated, and angry. But what I do is wipe my tears and tell myself this is not about me; it is about my sons Daeton and Ryder.
I was determined not to allow my boys to become statistics. I refused to let them down. I am DETERMINED to be the best mother to my boys! I am DETERMINED to give my boys the best life they can have!