Dear Vice President Pence,

I was scrolling Twitter last night and came across this tweet. And, I’m going to be honest, it triggered something in me. You see, I’ve been angry for a long time now, about a lot of things happening in our country. But my anger has been simmering, controlled. Tonight though, it reached a boiling point. I realize I no longer live in a country with values I recognize, or with leadership I trust. And that’s infuriating.

Personal responsibility, Mr. Pence? What exactly are you referring to here? Because I really don’t know how my six year old, who is non-verbal, non-ambulatory, exclusively tube fed, vision impaired and medically fragile, who relies on me and a handful of other caregivers for literally everything, is supposed to take personal responsibility for his own health. You know, since it was his fault he was born with an incurable genetic disease. I don’t know, maybe if he had just worked a little harder to eat as a baby, instead of throwing up every ounce we gave him, he wouldn’t have needed that feeding tube. I guess the hours we’ve spent in therapy trying to get him to achieve milestones like sitting up and crawling just weren’t enough. He should have tried harder, right?

Regardless of how much he’s slacked off in the personal responsibility game, here we are. I have a child who is not, and will not ever be healthy, and you and I both know that’s no one’s fault, especially not his. But seriously, answer this question for me. If lifetime caps on insurance are allowed to be re-instated, and Medicaid is gutted, how is Grayson supposed to get the thousands upon thousands upon thousands of dollars (and honestly, it’s likely millions) worth of healthcare products and services he needs to LIVE? Without access to the health care our private insurance and Medicaid provides, he will die. If I sound a little shrill and dramatic, it’s because I am. Put yourself in my shoes, and the shoes of my friends with medically fragile kids.

Hundreds of miles away from where I tucked my little boy in bed last night, positioning him to ensure he sleeps safely and comfortably, there are a group of white men (no women or people of color, really?) who secretly wrote a bill that makes it clear that the value of my son’s life has a limit. You’re a father. Think about that- what if someone told you that about one of your kids? Would you not fight like hell and maybe get a little dramatic and shrill?

Oh wait, you say you aren’t talking about Grayson himself not having any personal responsibility for his health? Ok, so you mean me? And my husband? Well, my husband works really long hours as a high school teacher and coach, pouring into teenagers and trying to teach them that personal responsibility you seem so fond of. But it’s no secret teaching doesn’t make one wealthy, and it certainly isn’t going to provide the funds necessary to keep my child from dying if we lose insurance and/or Medicaid for him.

And me? You want to know the weight of my personal responsibility? The crushing weight that every single special needs mother feels, and can’t unload? How I lie awake at night wondering, and worrying, about a child’s future who has no future apart from me. How sometimes I feel more like his nurse than his mom, or his manager, with all the phone calls and paperwork I have to do on his behalf. How keeping myself healthy (physically and mentally) is so crucial, mainly because how would I take care of Grayson if I were sick or dead? What would happen to him? Don’t you dare suggest that I haven’t felt, or acted, responsibly.

Mr. Pence, I know a lot of people who really like you, especially where I live. They voted for and tolerate that moron who picked you as his running mate, but you are the one they think is going to turn this country around, and make it “great” again. Why? Because you’re a Christian, and are pro-life. You claim to have Christian values and are going to bring God back into our country. Ok, great. I’m a Christian too. And I love Jesus. But like Ghandi, I don’t really like a lot of Christians these days, because they are so unlike my Christ. And honestly, I’m sticking you in that category too. There is absolutely nothing Christ-like or pro-life about gutting Medicaid and making the sick and the poor suffer while the rich get richer. Your brand of Christianity is the prosperity gospel- work hard enough, and be the right kind of person, and you will be rewarded. Real life, REALITY, doesn’t work like that. Good, hard working people get sick all the time and need expensive care, care that is often the reason they are poor. You think Jesus would agree that the value of Grayson’s, or anyone’s life, has a monetary limit?

I noticed you tweeted again the following statement, referring to the original tweet:

You may be right, that may be the Republican way, but I sure as hell hope you’re wrong about it being the American way. This is not the America I want to raise my children in, and they surely won’t be taught to embrace these values. Being sick or poor is not a character flaw. We are supposed to take care of each other; instead, you want only those who are rich, able-bodied, or have lived up to some arbitrary measure of “personal responsibility” to have the America you are making to be “great”. Well fuck that, Mr. Pence. I am angry, and I will stay angry and fight like hell for my child and all the children and Americans who are being screwed by this inhumane, ridiculous bill. That, I believe, is MY personal responsibility.

Life just got a lot busier. Last week, I started two new jobs and Whole30. I was quite overwhelmed (and hungry) but this week, I’ve organized my schedule and to-dos, and I’m feeling optimistic and happy about my new routine and responsibilities.

Job #1: I’ve taken over as the Managing Editor of Houston Moms Blog. I love to blog, and I also love to play around with words and correct grammar (#nerdalert) so this job was made for me. I’m still learning all the systems, as well as the world of SEO (was totally clueless about that until this week) but am loving it so far. I’ll still be blogging there regularly; in fact, my latest post was published on HMB today.

Job #2: I’m back working at Waggin’ Tails Pet Ranch part-time. I love everything about this job and have wanted to go back for years (but…children). Since Ryan is home for the summer, he is with the kids and I’m able to work 3-4 days/week right now. When school starts again, I’ll work while Charlotte and Nolan are in preschool and then some weekends. It’s refreshing to be working a job that has nothing to do with parenting…and I can snuggle cute dogs, and then give them back to their owners. (I have absolutely ZERO desire to have a dog of my own right now).

 Whole30: I’ve watched a lot of people complete Whole30s in the last year, but I was way intimidated and unmotivated to do it myself (because, basically my love for bread and cheese rank just under my children). Then Ryan and I decided we both needed to make some changes in our eating, so I suggested we try it in June. At the time, June seemed really far off. We started last Sunday, June 4, so I’m just now finishing Day 9. Surprisingly, it’s going really well. I had a headache and was cranky for a few days, and I miss toast, but that’s about it. I am doing this VERY simply- no fancy recipes are being prepared. I’ve taken pictures of almost every meal, because for some reason it’s satisfying to look and see all the healthy food I’ve consumed. I’m still waiting for the glowing skin and boundless energy to appear, but overall I feel good and proud of myself and Ryan for doing this.

Kids: My sweet Grayson started summer school today. I stuck him on the bus this morning that was headed to a different school and teacher than he had in Kindergarten (side note: how do I have a 1st grader?!). His sweet teacher (who I haven’t met yet) texted me right after dismissal today that he had a great day. I was so happy and relieved. We hired Grayson’s previous teacher to work his respite hours this summer. She is amazing with all 3 of the kids and we are loving having her around. Grayson also is doing PT this summer in the pool! I love that he can do summer things like swimming.

Charlotte continues to make me laugh as well as frustrate me with her sass, silliness and wit. My goals for Charlotte this summer: teach her to swim and get her to eat less than 100 snacks a day. Good luck, right?

Nolan is my maniac toddler. He is so LOUD, crazy and cute. He is loving the pool- he goes down the little water slide tons when we go.

I really wish we could put the younger kids in camps or fun activities this summer, but everything is SO expensive. We are hoping to take a few trips to the ranch and maybe go to Morgan’s Wonderland in San Antonio next month.

Here’s to summer, new jobs and getting healthy!

A few months ago, I was out with Grayson and engaged in a conversation with some women about a baby in one of their families who was being evaluated for a medical condition. The end result is although treatment is needed, the baby is going to be fine and should lead a normal, healthy life. What struck me, especially since my son was with me, was how she expressed obvious relief that the baby doesn’t have any cognitive impairments.

I spoke up.

And even if she did, she would still be just as valuable, and her life would be just as important.

The woman agreed, but in sort of a dismissive way.

Those few minutes have really stuck with me, even weeks and weeks later.

I get it. No one wants their child or grandchild to have any disabilities, and I suspect, from the outside, cognitive impairment must seem like the most daunting. People whose brains aren’t typical, who can’t learn, communicate or process information like most, are often pitied. We say that every life matters, that everyone is equally valuable, but do we mean it? Is my son and what he brings to this world as valuable as a gifted child, who may grow up to be a world class scientist, or president?

I think so, but I don’t think most people do.

Grayson is six years old. He’s still relatively little and cute. We get mostly smiles and encouragement from strangers. I get accolades for being his mom.

But what happens when he’s 16, or if he lives to 26? I doubt many will find his drooling, spastic arm movements and noises as acceptable as they do now, and surely he won’t be as “cute”. He still won’t be able to read, talk, or do even the simplest of tasks for himself. Will people see his life be as valuable then? Will they see the healthcare costs required to keep him alive as worth it?

I hope so, because he will still be Grayson. And he is valuable because he is a person. Period.

Grayson has speech therapy twice a week. For months, he has been working on hitting a button to activate a toy. Our hope is that some day he will be able to use some sort of communication device, but he’ll have to have some eye hand coordination for that. As you can see in the video, he is working SO hard, but his brain and his eyes and his hands just don’t quite talk to each other correctly. But he’s getting there, and it’s an incredible thing to watch.

A part of me feels sorry for the woman in my conversation because in some ways, she is the one missing out. Sure, having a neurotypical child is absolutely wonderful. I adore watching Charlotte and Nolan learn new skills and I do marvel at their intelligence. But there is something so magical about watching a child who struggles to do the most basic of skills work on those skills and finally achieve one. Grayson works so hard, but he also knows how loved he is, just because he’s Grayson. If he never hits that button ever again, he will be just as valuable, just as loved, and just as accepted.

Most people who know me well know I love Hamilton, and one of the themes I love most about the musical is Alexander Hamilton’s use of the written word to inspire revolution, change, and to build his own legacy. I’m no Alexander Hamilton, but this week has taught me that my writing can make a difference and cause people to think, and even change.

Last Friday, I had about thirty minutes before I needed to wake Nolan from his nap to pick up Charlotte from preschool. The day before, the House had voted to pass their version of the American Health Care Act and the Republicans were day-drinking to celebrate a bill that suddenly made my child’s future even more uncertain. My friend Kyla, who wrote an amazingly articulate and well-researched post that went viral on the original AHCA bill, commented on a picture of Grayson I had posted on Facebook.

“They better keep the phrase ‘pro-life’ off their lips after this; they voted for government-sanctioned death.”

Her comment stuck with me, and I began to think about all the ways the Republican bill directly contradicted their claimed “Pro-Life” stance. I thought about posting a picture to social media with my thoughts, but I kept thinking of more points. So that Friday, in about 20 minutes, watching the clock so I wasn’t late for pick-up, I pounded out a short, 350 word post. I read over it quickly for typos, added a picture, hit Publish, and shared it publicly on Facebook.

I figured my post would cause a mild stir among my Facebook friends- some would love it, but some would surely be offended and hate it. I literally had no idea what was about to happen.

That afternoon, Charlotte and I rode up with my parents to the ranch, and I noticed that my post was being shared quite a bit by friends. All weekend, I watched the Share numbers rise, but I didn’t think until Sunday to check my pageviews (because this is a tiny little blog that makes no money, so who cares, right?). I was absolutely blown away to see that it had been viewed 8,000 times, twice as many as my previous most popular post.

The next day, I continued to be shocked (and honestly a little freaked out) at how my pageviews and FB shares were rapidly climbing. The blog started getting lots of comments, and I read each one. One comment was from a Senior Editor at The Huffington Post, saying they would love to republish the post if I was interested. I emailed her, and she gave me instructions. I tweaked the post a little bit to give some background on Grayson, and they published it that afternoon. It was featured the next day on both the main HuffPost as well as HuffPost Parents Facebook pages.

As I am sitting here writing this post, my pageviews just hit over 1.5 MILLION on the original post published on this blog (I don’t have a way of seeing stats on the HuffPost). Between the original post and the HuffPost version, it’s been shared on Facebook 55,000 times.

So, it’s been a crazy week in my blogging life. I’ve always secretly wanted to write a post that would go viral, and I find it super hilarious and weird that the one that did was such an off-the-cuff, last minute brain dump. This may (probably will) be the only time this happens, so I wanted to document my experience of “going viral”.

• Above all, it’s pretty damn cool. I’ll be honest, I’m excited. It’s been fun to refresh my blog stats and watch the numbers climb.
• I’m so proud that literally millions of people have seen my precious son and know a little of his story. I hope that the message of my post impacted even a few people and led them to think about the terms “Pro-Life” and “Pro-Choice” in a different way. And actually I’ve had several people tell me they “never thought about it like this before.”
• It’s unnerving. This blog is where I’ve poured my heart out for 7 years, and there’s a ton of personal, emotional thoughts in it. I more than doubled my total pageviews for the blog in just one week. The fact that in one week, a million and a half people (most of them new readers) clicked onto my little space on the internet feels strange, and vulnerable.
• I’ve been really self conscious about my writing on the original post, mostly because it was/is so raw and with so little editing. The sentences are really long- a big no-no in journalism. But, I guess it resonated with a ton of people, so I’m trying not to pick my writing apart too much.
• I realized that I have a really thick skin when it comes to negative comments and trolls. And oh, the trolls. The advice is “Never read the comments.” Well, I read a lot of them. And mostly I just shook my head and rolled my eyes at the most vile. To be honest, the silence of some people who I am closest too hurts way more than any stranger lashing out on me on Facebook.
• I learned that there are A LOT of people who have weak reading comprehension skills and completely missed the point of my post. “What kind of a mother wishes she would have aborted her baby?” (Ummm….not what I said. At all).
• My favorite (negative) comment was from a woman who told me that my child being on Medicaid was theft and it was the same as coming into her house and robbing her. That I should ask my church and set up a GoFundMe to pay for G’s medical bills. She even said if I set one up, she’d contribute at least $100. People are nuts.
• This experience has both reignited my passion for writing as well as my resolve to keep fighting and resisting the political shit-show that is going on in our country right now. There’s too much on the line for me personally as well as for millions of Americans for me to be silent.

The picture on the left is a 3D ultrasound image of Grayson at 30 weeks gestation. The one on the right is him now, at 6 years old. If you are a pro-life Republican who is vocal about passing legislation that would protect the sanctity of life of the baby on the left, but are silent regarding legislation that will strip healthcare benefits for the child on the right, you are not pro-life.

If you are willing to accept a law that will make a C-section a pre-existing condition (and thus make future health care harder to get and more expensive), then morally demand that a woman carry a baby who is incompatible with life to term, you are not pro-life.

If you want a woman to be legally obligated to bring a baby into the world who is diagnosed in utero with profound medical needs, but then won’t accept any responsibility as a member of society to care for those needs, you are not pro-life.

If you clutch your pearls at the mention of comprehensive sex education or get riled up about “paying for someone else’s birth control” because your moral code is abstinence, you are part of the abortion problem. It has been shown over and over again that abstinence-only programs do not work in preventing unwanted pregnancies. Contraception works. You are not pro-life.

If you support the latest version of the AHCA, you are literally incentivizing abortion. There are women who will now abort for fear of themselves or their child being considered a “preexisting condition” and unable to get insurance. You can’t have it both ways. You can’t call yourself pro-life and stand by idly while millions of people are stripped of their healthcare benefits. If you think the right to be born is a basic human right, but access to healthcare is not, you are not pro-life.

If you are truly pro-life (womb to tomb), please call your senators today and demand that they vote NO on the ACHA. It takes just a few minutes. Please. There’s too much at stake to be apathetic about this issue.

I haven’t blogged in a long time. My writing last fall has had significant consequences with my real-life relationships, and I’ve needed time to process that reality as well as reflect on the impact of putting all my thoughts out there in the world. I’ve been reading a lot, listening a lot, and learning a lot. I’ve tried hard to understand, to see the nuance in so many of our political conversations, and to channel my anger and frustration into productive conversations and actions. I’ve been deliberate in engaging in in-person conversations rather than Facebook debates, but to be honest, I’ve left most of those baffled.

Today, the House voted to move the latest version of Trump’s “healthcare” bill forward. And it became crystal clear the value our country places on the disabled and people with greater than average healthcare needs.

If this bill passes, there will be significant cuts to Medicaid (projected spending cut of $840 billion over 10 years in order to offset the revenue lost with tax cuts to the wealthiest Americans). The person elected to represent me voted today that the monetary value of my son’s life has a limit. That the bottom line, and saving rich people money, is more important than his therapies, medical supplies, equipment, medications, nursing, and the care he gets in the hospital and from his doctors.

I read today that on average it is 4 times more expensive to raise a special needs child than a typical child. I think in our case, it’s much more than that. The costs of everything Grayson requires are astronomical. For example, Grayson got a new stander this week. Because he doesn’t walk, he is in danger of his muscles atrophying and his bones becoming brittle and breaking. The standing program strengthens his muscles and will hopefully prevent future (costly) problems. The cost of this one piece of equipment: $8,200. There is no way we would be able to afford even a fraction of that cost, let alone all the things required to, at a minimum, keep G alive. Tube feeding him costs more than $1,000 a month. He now takes nine medications a day plus several more as needed. I don’t know the total cost but I do know one of his specialty meds cost $900 a month. We pay $100 out of pocket each month for his vitamin cocktail. The point is, the cost of Grayson’s medical expenses far exceeds our monthly income. For our family, Medicaid is crucial.

I truly don’t understand why the party claiming to be pro-life thinks it’s perfectly acceptable to cut funding which protects the lives of the most vulnerable. Why is abortion considered murder if it’s not murder to let people die from lack of adequate health care? Really, I want to know the answer to this question.

I’m not surprised by the vote today. I’m saddened, furious, and scared, especially for kids like Grayson, but I’m not surprised. Trump doesn’t care about my kid. Paul Ryan doesn’t care. The Republicans in Congress don’t care. We put them there, against our own interests, and apparently I’m still really, really angry.

Please start calling your senators about this mess. This just cannot pass. If you voted for Trump, this is not what he promised during his campaign- please hold him accountable. Please. The value of my child’s life is limitless.