On April 15th 2002 my 8th grade son, Christian, came home from Milton Pope School and asked me why his left leg was so much bigger than his right leg. This started a 7-month roller coaster I would not wish on anyone.
We started with our family doctor and went on one referral after another until on November 9th, we checked him into the Mayo Clinic. Within hours we had answers and a lifetime of complications. My son has idiopathic lymphedema, which means his lymph system failed on his lower left side, waist down and no one knows why. He also has polycystic kidney disease, a disease that there is no cure for yet. He is NOT disabled!
His left leg is between 2 and 4 times the size of his right leg. It is aggravated by heat, humidity, certain activities, diet and more. He has kept a clean diet ever since to protect his body from these two unrelated diseases.
So many children we met on this journey did not make it into adulthood. They passed away from the things they were born with or developed. We are lucky. We are blessed. We had great insurance from my husband’s fabulous Union Job. There were no limits to Christian’s care.
At Mayo, my son’s nephrologist told me, “you have to pray this country has Universal Healthcare by the time Christian is an adult. You must make sure he understands that he is not disabled and that he has a huge future ahead of him. Promise me that you will advocate for him now, before he needs insurance as an adult, because there will not be any for him. He must not go on disability in order to survive. You cannot let that happen. Disability is a self-limiting prophecy and you want Christian to reach his maximum potential!” So I promised.
I started with our Senators and Representatives. I wrote letters to the President. I made calls. I read, I studied. And every version of the ACA that came out, I read cover to cover, amendment to amendment. My kid would have coverage! Then I wrote Thank you notes to all those that voted for people with preexisting conditions, so they could have a future the same as everyone else!
Yep, I knew the ACA was not perfect. Not the Universal Healthcare the Doctor ordered. Then the election happened. I wept November 8th, not for the candidate that lost, but for my son. For all the people I knew with preexisting conditions.
The life-limiting AHCA that Representative Kinzinger voted for without ever reading it: I read it. I knew that 56% of our district now fell into the high-risk groups. That there were not going to be enough Medicaid dollars for the poor. That the promise of “better, cheap healthcare for all” was an intentional campaign lie.
My heart hurts. When did We The People suddenly lack compassion? When did We The People suddenly decide that it is OK to neglect our own self interests? Our own health? Our own people? The AHCA does not in any way shape nor form fulfill the campaign promises made.
We The People need to be healthy. No one is asking for a handout. My kid, like most people I know with preexisting conditions, works every day. Often they have health insurance at work. Some are underpaid and depend on Medicaid to make up the difference. Compassion and brotherly love, the things that Made America Great in the first place, must come back home for the benefit of all of us!