Just Because He’s A Person

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.


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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.
Yeah, what a crazy week.

Letters to Nolan: 20 Months

 

Dear Nolan,

The main thing I have to say about you being 20 months is you are cute. You’re wild and naughty, but you’re cute while you’re giving me more and more grey hairs every day. I will say, though, there is definitely more purpose in your naughtiness these days. Instead of pulling things off the counter just to destroy them, you see what you want and do whatever it takes to get that item to play with (nevermind that sometimes it’s a knife or permanent marker). I spend much of my day chasing you as you run away from me, giggling with your blue eyes twinkling.

Can we talk about your sleep for a minute? It’s horrendous. Actually, you are napping like a champ, but I think that’s only because you REFUSE to sleep past 5:30 am. And you still wake up 2-3 times a night before then. Whhhhyyyyy??? Whatever the reason, I need to find a way to reset your internal clock because that alarm goes off way too early.

Nolan, at 20 months you:

  • Weigh 25 pounds
  • Wear size 18 month and 18-24 month clothing, size 5 diapers and size 6 shoes
  • Have 6 teeth
  • Talk all the time and have more words than I can count now. I love your little voice. You just recently started saying “Charlotte” really clearly and it’s about the cutest thing ever.
  • Hate having your diaper changed (and I hate changing it). There are more important things in this world to throw fits about, dude.
  • Run really fast
  • Bite people when you are mad. So far, you haven’t bitten anyone that isn’t in our family, but geez, stop it.
  • Love to be naked
  • Get SO excited when your daddy gets home from work
Nolan, my sweet little guy, I sure do love you. And yes, you are the cutest. Happy 20 months!
Love,
Mommy

You Are Not Pro-Life

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.

The Value of a Life

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.