Heidilore in ArkansasAn ACA repeal would greatly affect my son and myself, it is a matter of life and death.
During my pregnancy, I had preeclampsia. My blood pressure climbed up so high that I nearly had a stroke. I had to be in the hospital on strict bed rest, being monitored constantly. I had to stay in the hospital for several weeks, scared out of my mind. One night, suddenly my son's heart rate went erratic. My bp was getting higher. I had to have an emergency c-section. Thank God for pregnancy medicaid! My son was brought into the world and immediately whisked to the Arkansas Children's Hospital, as he was born at 32 weeks and only 3 lbs.
His problems were severe. He had hydrocephalus, a condition with too much fluid on his brain. He needed to have surgery to place a shunt in his brain. After that ordeal, the shunt failed and he needed another brain surgery...a shunt revision. He spent two months in the hospital.
When he got home, he had a lot of difficulty with feeding issues and gaining weight. He also had eye and coordination issues, a hernia, hearing issues and GI problems. In the past 3 years (my son is 3), Will has had 7 surgeries (2 brain, 2 eyes, 2 hernias and 1 ear surgery). He is a warrior, thanks to his early intervention, therapies, doctors and nurses. He is now a normal 3 year old with some delays, but happy and content.
He would not have gotten to this point without medicaid.
The state of Arkansas is already cutting therapies and other medicaid related expenses. If the feds go further, we are in deep trouble.
My days are not lazy. My son is on SSI, as I spend my days doing non-stop paperwork, shuttling him to therapies and doctors, part-time preschool, and making sure he is happy and learning. It can be very stressful, and with this possibility of Medicaid being cut it makes for very stressful nights.
As for myself, I too would die without medicaid. I have diabetes, kidney and liver issues, early cataracts, peripheral neuropathy, and major depressive disorder with anxuety. I depend on medicaid to keep me alive. I take several medications.
This whole thing has made my anxiety ten times worse. At any given time, my son's CSF pressure could increase and he would require another brain surgery. He still had difficulties with his eyes.
I wish that politicians could see that we are real people, human beings, that are just trying to make things normal for ourselves and our disabled children. For us, healthcare isn't a "luxury". It isn't partisan. It's survival. They should see how we cry at night, how the anxiety of poverty is crippling.
Thank you for reading my story.