Medicaid is how the right to a free and independent life is made real for many with disabilities. We will fight to save it. #SaveMedicaid pic.twitter.com/D8IbcHmItV — ACLU National (@ACLU) June 6, 2017

Hi. That is me and my daughter in the left picture of that tweet. (Yes, she is really that joyful and vibrant.) This is the story behind that picture.

My daughter, Charlie, was born ten hours into her twenty sixth week of gestation. She weighed just under one pound twelve ounces and was so small that she could be held in one hand. She resided in the NICU for three months.

People who are fortunate enough to avoid long NICU stays (or prolonged hospitalizations) don’t realize that, in Virginia, there is coverage called institutional medicaid that isn’t financially based. It worked in addition to the insurance from my husband’s employer and covered much of the expense of her extended NICU stay. Institutional medicaid helps many kids who require a considerable amount of care receive it while it protects their families from financial ruin.

Charlie was three months old when she came home for the very first time. Almost from the start, she needed many specialists and therapies to aid her growth and development. The policy from my husband’s workplace covered much of the costs but the out of pocket expenses were astronomical. Fortunately, Charlie qualified for a Medicaid waiver to assist with the out of pocket portions.

Medicaid is not just for families or individuals who are financially struggling. It also provides coverage and services for children and adults with disabilities through the waiver system. In my state, Medicaid waivers help with expenses, allow for services like respite care, and provide adaptations needed for an independent life outside of an institution.

Medicaid services are threatened by the AHCA with cuts and caps. Many of those who will lose coverage are children and the disabled.

Fear of losing Medicaid services isn’t the only reason I lie awake at night. The other reason is that I’m terrified my child will become uninsurable.

The circumstances of my daughter’s birth are considered to be a pre existing condition. Despite what proponents of the AHCA claim, there are not the same level of protections in place for those with pre existing conditions as with the ACA. It relies on state statutes which can be repealed or rewritten much easier than federal law. Also, my state’s statute allows for exemptions and exclusions in which my daughter could fall through the cracks or be pushed through a loophole.

Finally, I’m terrified she will lose coverage due to a lifetime cap. Without the lifetime cap protections provided by the ACA, again, she is reliant on protection from my state’s statute. I’m concerned with the language used in the statute that are supposed to protect her. There are allowances for lifetime caps on “non essential” items. Anyone who has ever dealt with automatic denials knows how many items are considered “non essential” by insurance companies.

If the AHCA is passed, all of these things threaten Charlie’s access to care. That is why you may have seen a lot of us in D.C. lately. I’ve put my heart and soul into protesting, lobbying, and consulting experts. I am learning to read bills and statutes.

After everything she’s been through, all we’ve asked of her, and the seemingly endless grueling effort, it’s going to be bad policy that finally stops her. The passage of this bill will rob her of the opportunity to reach her full potential by limiting her access to healthcare and services. I haven’t been this heartbroken or felt this powerless since the first few days of her life when we were unsure of her survival.

To the representatives that are pushing this bill through: Shame on you. You are not supposed to act as puppets for the powerful. Nor, are you to use the honor and privilege of serving in public office to further your own self interests. You are supposed to work for the common good, behave with decency, and stand up for the most vulnerable among us. The AHCA does none of these things.

I am disgusted with and disappointed in many of our leaders. I’m ashamed for all of us that we have allowed it to get this far.

Rather than announce your disapproval or outrage on social media once the bill passes, fight it now. It only takes a few minutes to call your senators and just a few moments to show up to local offices or demonstrations. If none of these healthcare aspects threaten you personally, you are lucky. However, I guarantee they jeopardize the well being of someone you love. For me, it just so happens to threaten my only child. I have no choice but to fight for her. Who are you fighting for?