Dear VP Pence, What Exactly Do You Mean by "Personal Responsibility"?

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.

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Whirlwind

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!

Letters to Nolan: 21 Months

 

 

Dear Nolan,

Sweet summertime is here! And you, my sweet little boy, are soaking it up. As in, you are soaking wet more often than not these days. Your favorite activity right now is playing with the hose in the backyard. You stand at the back door and say, “Outside! Wet!” begging to go soak yourself. Yesterday, we went to the neighborhood pool for the first time and you fearlessly went down that water slide about 20 times in a row. However, the one time I looked away for 3 seconds while you were supposed to be climbing the steps of the slide, you were running straight for the ladder of the big pool. You are a runner and a limit-tester, and I literally cannot take my eyes off you.

Nolan, at 21 months you:

  • Weigh 26 pounds, 13 ounces
  • Wear size 18-24 month clothing (some 2T shirts), size 6 shoes, and size 5 diapers
  • Cut several teeth this month! You now have 8!
  • Are sleeping better at night- most days you stay in bed until at least 6:30- Hallelujah! You are also napping fairly consistently- about 2-3 hours a day.
  • Still love your bottles. I know I should be weaning you from them, but they really are the last “baby” thing left about you, and you are so, so sweet when you drink them and play with your hair at the same time.
  • Are a fairly good eater, and have started asking for “snacks” a million times a day like your sister. Arg!
  • Your vocabulary continues to grow. You shout “Charlotte!” more than any other word, and the cutest is when we ask you something and you say, “Ummmm…yeah!”
  • You also sing! You can sing the ABC song, some of the songs Charlotte learned at school this year, and some non-sensical songs you belt out while dancing.
  • Have a security object! Since Charlotte is so attached to her beanie baby dog Milton, we decided to try a beanie baby dog with you too. You now have Bo, and he sleeps with you and you get excited when we give him to you. “Bo! Bo!”
  • Have been very sweet with your big brother lately. You will find his rings or iPad and say “GG” and give them to Grayson.
Nolan, I love you so much. I love your energy, your spunk, and I love watching you discover and learn your world. Happy 21 months and happy summer big guy!
Love,
Mommy