Hooray for Injured Brains!!!

Entry #1: So You Know Our Story

"You want me to SHARE our story! Us! This crazy, dysfunctional life?" I've slowly come to the understanding that the insanity of my last ten years of existence can actually benefit others and give voice to a community that too many overlook (especially those in power). But before we get to the long argument about the needs of the disabled community, the need for government assistance, and why IDEA, FAPE, the ADA, and other laws pertaining to equality for the handicapped—let me introduce myself.

Before all this happened, I was the manager of a pretty unique vintage store that catered to the film and fashion industries and I loved every minute of my life; the invites to parties after work, the ability to shop on my own, the apartment that came with unique shelves I put my extra fabric and yarn on, my friends, my boss... I thought I would have a stable, independent life for as long as I drew breath! I was pregnant with twins and in a close relationship with their father. How could this fairytale existence go horribly wrong?

At twenty-five weeks into my pregnancy, I dilated to 100 percent. The twins were coming—extremely early. I gave birth to two beautiful identical twin girls via cesarean section who would have chronic medical issues and disabilities for the rest of their lives. It became apparent that one of my daughters had Tetralogy of Fallot, the leading cause of infant death (although somehow considered rare by doctors). She was missing her pulmonary artery so no blood was going from her heart to her lungs and she could not properly oxygenate her blood cells. She passed three days after the surgery to place a shunt to connect her heart and lungs. She would have needed to have that shunt changed throughout her development until a cadaver piece could be found to replace her artery.

I didn't have time to grieve for the child I lost. There was still a remaining daughter in the intensive care unit who needed my undivided attention. So I buried myself in her recovery. We left the NICU together for the first time after almost four months. It was a small victory, but certainly not the end of the road. Since leaving the NICU, my daughter was diagnosed hypotonia, dyspraxia, sensory disorder, central nervous system disorder, ADHD, dyslexia, dysgraphia, dysarthria, mixed expressive/receptive language processing disorder, specified learning disability with math impairment, bronchopulmonary dysplasia (a form of asthma affecting micro preemies), and celiac disease.

The need for complex, specialized medical care for my daughter is more than obvious. Her medical history is over 235 pages long now that she is nine years old. Her multidisciplinary medical team encompasses doctors and specialists at Kennedy Krieger Institute, Children's Hospital Center, Mt. Washington Pediatric Center, and Johns Hopkins University Medical Center. It took a team of 31 doctors, therapists, aides, and many recreational directors in our community to turn my daughter into the current Little Miss Delaware United States. She's a dancer, pianist, gymnast, actress, and she does it all with "brain dysfunction due to prematurity."

None of my daughter's success would be possible if I hadn't made a life-altering decision—I left my dream job so my daughter could qualify for SSI and Medicaid. Her medical needs were too extreme to be covered by regular insurance. It was $250,000 per month the first four months of her life to keep her in the NICU and ensure her survival. I could predict how much more it would be to watch her grow, develop, become an adult, and have kids of her own. Costs like this are only covered by government insurance.

And of course, Medicaid comes with certain requirements... You have to be low to no income. Until recently in my state, you're only allowed $1200 in assets. Period. You need food stamps too because you can't cover meals on just $1200. Now the picture emerges, why in this current age of Donald Trump and Congressional Republicans telling the public to support cutting trillions from programs like SNAP and Medicaid that form the basis of my child's care, I felt compelled to tell my story. There is a need for the general public to meet who honestly depend on government assistance long-term to meet their needs. You need to know we are not lazy non-achievers draining state and federal resources. We are not the enemy of those who work. Look again at the photo above; do you see a burden on your paycheck or a child with a medical condition trying to succeed beyond expectations?