I guess I’m starting a new series on the struggles of raising a disabled child in the US. Our income disqualified us from disability, regular Medicaid, most assistance programs, etc…..so we have to pay out of pocket. Which we can’t afford to do either. So we find ways around the struggles. Regardless on how much you make, unless you’re a millionaire, you cannot afford to raise a child like this without some help. His meds alone total about $20,000 a month. His last hospital stay was almost 1 million, not including the 5 surgeries. The government doesn’t take any of that in to account with assistance programs. My husband works 70-80 hours a week and makes fairly good money, but it’s not enough when you have a medically fragile child. I have my CNA license but I can’t work since we don’t have full time nursing coverage. So I stay home and take care of Creed and the other kids. Texas will not pay parents to be caregivers. Moving to a different state wouldn’t be feesible either.
#tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #bluecollarfamily #middleclass