I had a perfect, healthy pregnancy. I had dreams for my new, perfect family. We couldn’t wait to welcome our perfect baby boy into the world. However, life threw us a curveball.
My perfect pregnancy ended in a living nightmare. The delivery wasn’t perfect. My dreams were crushed in an instant. And my precious baby boy came into this world being … well … not so perfect.
Wade suffered brain damage due to lack of oxygen. He now lives with a disability. Finding your family’s new normal takes its toll on everyone.
Plus, medical care is costly. Having a disability is expensive. When your child is in the NICU, fighting for his life, the last thing on your mind is money. Even with health insurance, raising a child with a disability can be a huge financial burden. The future can look quite bleak.
I've lost track of the number of specialist appointments we have had. The medical equipment, the supplies. I can’t count the hours spent in therapy over the course of 10 years. I can’t tell you how much money insurance has paid out. But I know our family would be bankrupt without it.
Thankfully, Wade also has a Medicaid Waiver program. It covers expenses that our private insurance doesn’t. It also covers respite and nursing care. Without this program, Wade would not have his current quality of life.
The waiver also allows Wade to receive care in his own home. He can be with family and friends instead of in an institution.
Our family is fortunate to have health insurance. We still pay out of pocket for some things insurance doesn't deem “medically necessary.” But that cost is relatively low. The financial burden doesn’t weigh quite as heavy anymore. But I still have concerns for Wade’s future. We currently have coverage, but I know that can change anytime.
The fear of not being able to afford care is always in my mind. I worry that when cuts are made, the Medicaid Waiver program will be first in line. It’s sometimes hard to sleep easy when you know these decisions are being made.
In 10 years, our family has overcome a lot. We have cried, laughed, fought, and advocated. We will keep battling for the inclusion of people with disabilities, as well as health coverage for all.
Our family has found our new normal. We have a new purpose in life. And we have even bigger dreams than ever. Wade and his disability have taught us nothing in life is ever perfect. But it is filled with many, many perfect imperfections.
Much more information on waivers and their benefits is available to you.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.