Love for Luca, A life with Cerebral Palsy
Six years ago, 3 little miracles where welcomed into our world at 28 weeks gestational, 3 months early. Stella, Jack and Luca. They were our tiny little miracles weighing under 3 pounds, Luca was our smallest baby at a pound and a half.
After 3 long months in the NICU, with all his struggles of being a micro preemie, surgeries and stresses on the body, Luca was diagnosed with cystic encephalomalacia. As a result, Luca has spastic quadriplegic cerebral palsy, epilepsy, severe developmental delays, microcephaly and is severally visually impaired. Luca is non verbal and non ambulatory, meaning he can not stand or walk.
Luca's needs are endless. Every day, every week, every year there are therapies, appointments and even surgeries. Luca goes to physical therapy, occupational therapy on land and in the water, speech therapy, cranial sacral therapy and therapeutic horse back riding with a physical therapist.
Yes, we have insurance but not everything is covered. Insurance denies us the basics Luca needs to function and be independent such as a sleep safe bed, a bigger feeding chair and bath seat. They call these needs a privilege not a necessity. It breaks my heart that it's a necessity for my son to live a safe and comfortable life, It hurts to hear it.
This means if we want these things for Luca which helps him function and helps us care for him all in a safe matter, we need to find another way to provide it and we don't have the means for that.
A wedge we want for Luca that he uses in therapy to help build arm and neck strength is not covered by insurance and is over $300. Even light up switch toys which Luca loves are over $100 each. The cost of everything just piles up. It's impossible to provide all these things. Really the list can go on and on. And in the end, we just don't buy it.
Wheelchairs, feeding chairs, standers, walkers, eye gazing computer device, diapers, wipes, Pediasure, therapies, doctor appointments; these things will never ever ever go away. The need for all this will only become more as he grows. We will eventually need a handicap van and a handicap accessible home and there isn’t anything to help families like ours.
As a family we have pride in providing for our children everything they need but sometimes, as I’ve been told many times, we need to put the pride aside and let help be welcomed. The reality is raising a child with special needs is emotionally, physically and financially exhausting. YES, my family needs the help and YES, OUR LUCA DESERVES THE WORLD.
As Luca's parents, we shouldn't have to worry about how we will pay for Luca's care but instead what is the best way we can give Luca a comfortable and happy life.
Luca is an amazing little boy who loves life and works hard everyday in everything he does. He has taught our family to appreciate life and not take it for granted. It's such a blessing to see how tremendously loved he is by so many.
