Education is a Right in America, So Why Isn’t Healthcare?

Dear world leaders, dear brothers and sisters. Education is not a privilege. Education is a right. Education is peace. 
Malala Yousafzai
Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.
 – Martin Luther King, Jr.
Most Americans put a high value on education, including myself. We moved to our neighborhood specifically for the school district and neighborhood schools. Our medically fragile son Grayson, who was born with Leigh Syndrome, a progressive form of Mitochondrial Disease, is currently thriving in public school. Federal law guarantees Grayson a free and appropriate public education (FAPE) in the least restrictive environment. Obviously, this looks different for each child, depending on his disability. Grayson is physically and medically able to attend school full time in a classroom dedicated to students with special needs.


Of course, Grayson’s education isn’t really free. Texas public schools are funded by taxes: taxes that everyone pays, one way or another. Whether or not someone has a child attending a public school, he is partially paying for that public school and the education of the children inside.
I have never been told that my child isn’t entitled to an education.
Why? Because education (at least K-12) is a basic right of all American children, according to our society’s value system. For the most part, we all willingly pay our fair share to ensure our (collective) children learn in the best environment, with the latest technology, and the most qualified teachers.
Never have I heard that our family is taking advantage of the system, is a drain on society, or should have planned better so we could pay for Grayson’s education ourselves.
But I have been told, over and over, that my child isn’t entitled to healthcare.
Healthcare is not a basic right, according to our society’s value system. There are a lot of people who consider it theft if a fraction of their hard earned money goes to pay for the equipment, supplies, therapies, nursing, and medications Grayson and other children like him need to live and live comfortably.
I have heard that our family is taking advantage of the system, is a drain on society, and should plan better so we can pay for Grayson’s healthcare ourselves.
Why is education a basic right but healthcare is not?
Not many would disagree that both the education and healthcare systems in our country are broken. Obviously, there are failing and under-funded schools, and more often than not, children in wealthier areas have advantages and receive a better education than children in poorer communities. And then there’s Secretary of Education Betsy DeVos, who wants to privatize our education system with school vouchers, which will undoubetly hurt the poor and disabled children in this country. This is, without a doubt, injustice. But no one will completely deny education from poor children due to their families’ inability to pay. And yet, this is exactly what the GOP wants to do with healthcare.
On our family’s income, we can’t afford private school for our children. Fortunately, public school is an option for us. All three of my children will eventually enroll in public school, and our income won’t be a factor in how many years of schooling they receive, or what they learn in those schools.
Here’s the truth: on our family’s income, we can’t afford all the healthcare Grayson needs either. And this would be the truth even if my husband made twice the salary he does and I had a full-time job. We have health insurance (and yes, we are faced with yearly premium hikes just like so many other Americans), and we pay into the system. The cost of Grayson’s care that private insurance doesn’t cover exceeds our income. Affording his care without Medicaid is completely out of our reach.
Fortunately, Medicaid (through a Medicaid waiver program) is currently available to cover the costs that our private insurance doesn’t cover, costs that we could never afford.
We are not taking advantage of the system, draining society, or robbing YOU of your hard earned income by keeping our child alive, just as you aren’t taking advantage of the system, draining society or robbing US of our hard earned money by sending your children to public school.
The United States of America prioritizes the education of our children, and its citizens both pay and benefit from that priority. Why can’t we do the same to make our society healthier and graciously care for its members who are sick or disabled? Let’s start treating and legislating healthcare for what it is: a basic human right.

2 Years: Happy Birthday Grayson!

Dear Grayson,
2 years! Happy Birthday, sweet boy. Today (and tomorrow at your party) we celebrate YOU and what a special gift you are. You have filled our lives with joy and love these past two years, and continue to touch so many lives with your story, most of who you have never met in person. You are pretty amazing.

Yesterday, we brought cupcakes to your school to celebrate with your new friends. Mommy has been waiting a long time to do that- bring cupcakes for my child to school. You were really tired and didn’t really appreciate anything about your little party except when we sang “Happy Birthday”- that was the only time you weren’t crying. But it was still fun for me and it was special to see how much your teachers adore you.

This morning, we woke up to a wonderful surprise. 9 of Mommy’s bloggy friends gave your a virtual Birthday Party- it was so cool! They posted such sweet messages, birthday wishes, and Mitochondrial Disease awareness, and we are so, so grateful for such wonderful friends we’ve never even met! Look at the sweet collage that was in all the posts- isn’t it adorable?!

Thank you so much CourtneyEsperanza, Al, Alex, Becky, Coco, Josey, SRB, and jjiraffe for this- it is amazing! Also thanks to Amber and basebell6 for their sweet posts of support last week.

This morning, we had a Mito Social with some families who are also affected by the same disease you are. We had a good time, although in your always perfect timing, you threw up all over Mommy’s good friend who was holding you when you got fussy. Oh, Grayson. You and your buddy Kaiman (who also has Leigh’s Disease) are 2 handsome dudes! Everyone sang Happy Birthday and we ate cookie cake in your honor.


Unfortunately, when we got home, it was apparent you weren’t feeling well. Poor little guy, you got sick on your birthday 😦 You did take about an hour nap, but had a really hard time falling asleep tonight. I hope you feel better tomorrow for your party!

Sweet boy, you have been through SO much in your two short years on earth. And on top of that, we got horrible news last week about your disease- I just can’t imagine you not being with us. I cherish each and every day with you and I hope and pray for many, many more birthdays to celebrate your life.

I love you so, so much Grayson. Thank you for being you, for being amazing, and for bringing such joy to my life. Happy 2nd Birthday!