If I could tell you one thing that will stick with you forever about raising a child with special needs, I would tell you this: It’s a true honor and privilege. It is by far the most inspirational journey I have experienced. Raising Savannah Mae has enriched my life and opened my heart. She is my littlest inspiration.
Inspiring, yes. Easy, not a chance. Savannah has the absolute best demeanor. She is truly beautiful, sweet, happy and feisty enough to be a little warrior. She has been through a lot in her five years on earth, more than I could ever imagine. Yet, she wakes up each day with a beautiful smile. She is my sunshine on a cloudy day, a diamond in the rough with the most amazing sparkle. She is my hero!
Her list of medical terminology is quite lengthy, but to sum up her major medical complexities, she has been diagnosed with hydrocephalus, cortical visual impairment and Ogden syndrome, just one of 14 females in the world with this syndrome. She faces a lot of challenges with her severe global delays. Every day, she smiles. Every single day, she makes me smile and my love for her is indescribable.
Often, others pity families raising children with disabilities, but why? We all have our challenges as parents. Yes, raising a child with special needs comes with more obstacles, appointments, therapies, equipment, advocacy, pure exhaustion and emotions, but we learn to overcome these obstacles and our children inspire us to be the best we can be. We start to realize our strengths and push through each obstacle more determined than the one before.
My Savannah Mae has enriched my life through many life lessons. I have learned what truly matters in life from a tiny and sweet 5-year-old girl. The most important lessons, life and love. Never before has my heart been this open, and never have I loved anything the way I love my daughter. She gets me through any obstacle we face as a family.
As a parent raising a child with disabilities, I want nothing more for her than her acceptance in life. I want people to see the beauty in her differences, in all our differences. I want her to be included. I want more accessibility and more fun activities that are accessible to our children, and I want media to use our children so the public eye will be more accepting and less afraid.
Like any mom, I worry and have concerns. As a mom to a little girl with special needs, my worries and concerns are heightened to a different level. Every gain that may seem minute to a family raising a child with typical development is a huge accomplishment in our home. Every inch forward is a triumph in our life. We celebrate our amazing daughter daily. She has truly made me a better human.
So please, take the time to truly know someone living with a disability. It will inspire you. You won’t regret it.
Lacey Smith lives on the North Shore with her family and was inspired by her daughter to pursue a career as a teacher of the visually impaired. She works for Perkins School for the Blind as an itinerant teacher with the infants and toddlers.