#NaBloPoMo Day 6: Anxiety and Anger

I consume a ridiculous amount of blog posts and articles that are shared to Facebook each day. I always tell people I like Facebook and Twitter so much more than Instagram because I greatly prefer words over pictures. Give me all the words. I learn a lot and am challenged a lot by what I read online, but rarely does a piece change my life. But on Saturday, one did.

I was scrolling Facebook and came across this article on Scary Mommy: I Thought I was Turning into a Rage Monster. Then I was Diagnosed with Anxiety.

Never has another person’s words about their personal experience so closely mirrored my own experience, literally down to the details. I almost couldn’t breathe as I read the article 3-4 more times. Everything she describes is exactly what I go through every second of the day.

I thought, like many of you, that I had suddenly developed an anger problem. I thought, just like you, that I was a terrible person. I also thought I was alone. Who treats their kids like this, except bad people? Who feels like this? I had no idea that, like so many moms, my anxiety disorder was manifesting as anger.

I wasn’t mad. I was actually terrified.

I knew that anger was a symptom of anxiety, but never really made the connection that my own personal anger could actually be major anxiety. But now, I believe it is. Every day, I find myself losing patience with my family, the people who I love most in the world. I have been rationalizing it because right now, life is really hard. Objectively, on their own, toddlers, preschoolers, and special needs children are a tough bunch. And I have all three, at the same time, constantly needing me. They all need me SO MUCH. It’s overwhelming. And terrifying, because I feel so inadequate and not enough for all three of them.

Then you hate yourself for being mean. Your heart hurts because you love these kids so much, and you never want to hurt their feelings. But the yelling comes again, and again, and again.

I have been powering through, apologizing to my kids for yelling, and obsessively cleaning the mess in the house, that always seems to reappear seconds later.

And what do kids do but makes messes? We all know this. We all objectively accept that kids will destroy a room in 15 minutes and then absolutely refuse to clean it. It doesn’t matter that we know it. It enrages us. And this rage stems not from their behavior (expected), but from our own terror.

I actually had a blog post planned about the mess in my house. How no matter how much I clean, it’s never clean. There’s always toys, dishes, scraps of paper, cups, and unidentified stickiness everywhere. How it makes me feel like a complete failure, and so embarrassed. And angry. I walk in the kitchen and all I see is crumbs on the floor, and dirty dishes on the counter. And now I’m wondering if the mess really isn’t all that bad- if I’m like a person with an eating disorder who looks in the mirror and sees a distorted image of herself.

This is what it means to live with an anxiety disorder that manifests as stress and anger. Every single day, you try your damnedest to keep a lid on your emotions, try not to mind the clutter or being late, try to stay on top of yourself and ask, “What am I really feeling?” That takes a heck of a lot of effort and a hell of a lot of metacognition. It’s exhausting. Sometimes you’re too far gone to manage it. And you yell, and you lose your cool. You yell at the ones you love the most. The ones you would literally do anything for.

I spend a lot of mental and physical energy trying to keep my kids safe and healthy. I realize now that I am constantly on edge, both at home and out in the world. I’m tense about their behavior and their safety. The world feels hostile and unsafe, even in places that are supposed to be fun. Just last week, I had to call the police because a group of teenagers were harassing me at the neighborhood playground after I asked them to watch their language in front of my children. I pray that the words and phrases those little ones heard directed at their mother have since vanished from their memory. There are also scary accidents and near misses all the time, like this incident that happened at the very same playground (maybe we should stay away from the playground for awhile). And of course, the mass shootings that seem to be happening every other week now. I wrote a piece for Houston Moms Blog about not parenting with fear, but geez, it seems easier said than done these days.

I’m never, ever relaxed with my kids. With Grayson, I always feel like I’m shortchanging him on attention, and that I should be holding him more, or stimulating him more. And of course I worry about his health, and what his future looks like. He’s such a mystery, and while that’s a beautiful thing in some ways, it’s also terrifying.

With Charlotte, I’m always stressed about her behavior and how I am/am going to raise her. One one hand, I love that she is stubborn, feisty, and speaks her mind about everything (everything!) but I feel enormous pressure to teach her to channel her personality appropriately, and I often feel like I’m completely failing.

With Nolan, most of my anxiety comes from worrying about his physical safety (running into traffic, being too ambitious in his climbing on the playground) and getting mad at him for his messes and his screaming. This morning, he would NOT stop turning on one of Grayson’s medical machines- it was absolutely maddening.

Saturday night, I started reading more about anxiety, and realized a lot of physical symptoms I’m having are also signs of anxiety. I took several online quizzes, which all diagnosed me as having major anxiety. So obviously, I need to do something about this, because this is no way to continue to live.

I immediately began taking my prescribed medication again; I had stopped taking it months ago for the absolutely stupid reason that I can’t remember to take it. Hopefully, I will see some changes quickly from that. And I need to look for a therapist- therapy has helped me so much in the past, and I realize now that I need someone objective to talk to.

I’m really hopeful that very soon, I can get this anxiety under control and stop being the angry mom all the time. My kids deserve better, and I deserve better too.

#NaBloPoMo Day 5: Sunday Mornings

Sunday mornings are the most peaceful hours of my week, and yet, my most conflicted. A few months ago, I gave up trying to figure out our very complicated church situation, and for now, I am sitting out Sunday morning church. I look forward to my Sunday mornings all week long, when I sit for hours and hours in a coffee shop with my computer, a large cup of coffee, and I write. This ritual fills my introvert cup like nothing else, and at times, can very much be a spiritual experience.

We never lived “close” to our previous church, but when we moved a year and a half ago, our new home put us 25 miles from the church, by way of a toll road. Putting aside any spiritual or theological concerns, logistically this wasn’t going to work for our family long-term. And although the church is filled with wonderfully supportive and kind people who have loved our family for years, we were never able to get deeply involved due to the distance, our schedules, and our unique situation with Grayson. I don’t want anyone to think I’m blaming anyone or myself for this, it just objectively is what the situation is. And I do still attend weekly Bible study at the church; in fact, Tuesdays are my favorite day of the week. Charlotte and Nolan love the kids program (they talk about their friends and teachers there all week), and I love the little community of women in my group.

I’ve always felt like an outsider at church. Even as a child, I remember getting really good at pretending to feel the things I was supposed to feel, and going through all the right motions. I’ve done many, many Bible studies and attended countless Christian activities. Church has been a weekly ritual for my entire life. But I’ve never felt truly connected or at home at any church. I can still picture cliques at church from 25 years ago, inner circles I never figured out how to become a part of. And now, I see friends who have tight-knit small groups who are “doing life together” and once again, I’m on the outside. And most of that is probably me, my personality, aspects of life beyond my control, and the effort I put in to the community aspect of church. But at the present, putting forth that effort is beyond my emotional bandwidth.

When I think about trying to find a new church, it seems impossible. Honestly, there aren’t a lot of people who feel safe to me, especially other Christians. And the idea of building community feels exhausting right now. And maybe that’s it…I’m exhausted. Exhausted with feeling hurt, angry and and confused with Christians. I’m exhausted with feeling alone in a crowd, so I’d much rather just actually be alone. And attending church as an introvert, even when one is in a good spiritual place, can still be exhausting. There’s so much small talk, so much trying to say the right things, use the right words, wear the right clothes. And adding a special needs child, a preschool and a toddler to the mix leaves me unmotivated and anxious about church most of the time.

For a year now, I’ve been deconstructing, questioning everything I thought I believed and the institutions I trusted. I was listening to an episode of The Liturgists this morning on spiritual trauma, and one of the things they talked about was that “deconstruction” is seen as a progressive buzzword: a trendy and popular thing for those who call themselves Progressive Christians to do. And it’s seen as a Snowflake bandwagon to jump on. But real deconstruction is incredibly painful and isolating (and so, so slow), and no one would choose to do it if it didn’t feel absolutely necessary. The easy thing would be to not question, push aside doubt, and conform. It would be much easier to slip right back in to the Christian machine and carry on in the same manner as I have the last three decades.

I don’t know what my church future looks like. My husband and I now have very different theological stances on some key issues. And that’s ok, but it will make finding a church we can attend together really difficult. Right now, he is taking the kids to the church he grew up in, and the kids are happy there. But if I am going to dive in and do the heavy emotional work of finding a new faith community, I want it to be in my actual geographical community. I’ve spent my adult life driving all over the city of Houston, putting thousands of miles on cars and probably taking years off my life in traffic. So now, I want to live where I live. But our community is conservative, and I don’t know if I’m in a place to open up and be vulnerable with people who ultimately don’t believe the same as I do on major theological issues. I don’t want to be talked about behind my back or seen as a prodigal child by a whole new group of people- I already have enough of that from people who I love and trusted.

So for now, my Sunday mornings are for me. They are the only hours I truly have to myself, and right now, they feel precious. I can relax. I can breathe. It is truly a day of sabbath for me. I’m trying so hard to be gentle and kind to myself as I navigate this interminably painful season.

#NaBloPoMo Day 4: My 30 Day Challenge Project

I turned 38 years old last month. I’m not big on birthdays at all, especially my own. However, it does feel fairly significant that I have just one more birthday left in my 30s, and turning 40 in a few years feels even more significant.

When my birthday came around on the 13th, I was 2 weeks in to a 30 day goal I set for myself (more on this later), and realized that a 30 day timeframe really works for me. I did a Whole30 back in June, and now this 30 day thing- both were challenging, but doable. So I had the idea of doing a series of 24 30-day challenges, one for each month until I turn 40. In my head, I’m calling it The 30-Day Challenge, but if anyone has a better or more creative name, I’m all ears.

So basically, I’ve made a list of habits I want to change or practices I want to make habits before I turn 40. None of them are super-difficult or life-altering in and of themselves, but hopefully collectively they will make a significant impact on my life. I don’t have 24 yet, but here’s my running list:

30 Days of Screen Free Kids: Ok, so this is the one I was in the middle of when I got the idea for the whole project. We’re actually on Day 38 of this one, because I have no immediate plans to stop it. I’m not going to write a lot about this one today, because an article I did write on it was picked up by Scary Mommy and will be published at the end of the month on their site, and I’ll link to it then (definitely with some updates).

30 Days of Writing: I’m doing #NaBloPoMo right now, and also writing and editing for Houston Moms Blog.

30 Days of Healthy Eating: My goal on this one is to do another (modified) Whole30. I found Whole30 a lot easier than I expected for the majority of the meals- the ones I ate at home. But going out with friends…womp womp. I hope to be really strict on the plan at home/taking lunch to work, but not be so strict when out at social events.

30 Days of Exercise: No idea what this will actually entail yet, but I’m hoping to make exercise a part of my life again at some point in the next 2 years

30 Days of Handwritten Letters: I’m going to send letters to people for 30 days actually written on paper and sent via snail mail.

30 Days of Selling: The next two go together. I’m going to try and sell something on FB every day for a month, and save all the money for the next challenge

30 Days of Fashion and Beauty: My wardrobe is pitiful, and I spend hardly anything on beauty products. I want to use the money I make selling crap we don’t need to treat myself (and maybe look a little better in the process). 30 days is definitely going to be expensive for this one, so I’ll have to get creative.

30 Days of Kindness/Hospitality: After spoiling myself, I’m going to spend a month giving to others and having people over (which makes me really anxious, but I’ll work on that).

30 Days of Reading: And by this, I mean actual books.

30 Days of Organizing: I’ll pick one room or area a day. Maybe I should do this one before the selling month so I can purge stuff to sell.

30 Days of Making My Bed: This one may be too lame to do by itself, or could be done on a month to give myself a break. But I always read that making the bed is a habit of successful people, and I wish that I could remember to do it.

That’s all I have so far, but I think that will take me almost to my next birthday. If you have any other ideas for me, please share!

Hopefully by the end of this project, I’ll be 40 and a little more fabulous!

#NaBloPoMo Day 3: Moxie Matters Tour and Surviving Painful Seasons

Last night, two of my dearest friends and I got to go to the Houston stop of Jen Hatmaker and Nichole Nordeman’s Moxie Matters tour. This was my first time seeing either of them live, which is sort of hard to believe considering what an impact Jen has been in my life over the past few years.

Jen was, predictably, both hilarious and so real and insightful. She did not hold back with her honesty and vulnerability about how devastating the past year has been for her. A year ago, she gave an interview with Jonathan Merritt where she stated that her views on LGBT relationships had changed, and she is now fully affirming. The backlash was swift and intense: her books were pulled from shelves, parts of the Christian community came at her like an angry mob (she writes about that experience here), and she and her family were threatened physically. So Christ-like.

This past year, I’ve watched all this unfold online, and witnessed just the public backlash on social media. But that was just the tip of the iceberg, as Jen said they couldn’t even keep up with the volume of hate mail they received. And all this because she said gay people should be fully accepted in the church. I’ve also watched her stand up for justice and speak out politically, and every time, people tell her to “stay in her lane.” Just the other day on Twitter, she replied to this very phrase with “Human and civil rights, decency, truth-telling, the abolishment of white supremacy, and the exposure of corruption will always be my lane.”

Jen talked about the pain of the last year and how a lot of times there is no easy fix to our pain. Many times Christians want to go through something, learn their lessons, and move on…but often it’s not that simple or quick. But that pain is actually our friend because it forces us to deal with whatever issue(s) we are facing.

That part of her talk resonated so deeply with me. Obviously I haven’t been through anything nearly as dramatic as she has, and haven’t had anyone threaten my safety. But, in the last year, I’ve been dealing with a major shift in my faith and how I see the church, and it’s been excruciatingly painful. And a lot of that pain has been private, because I’ve felt abandoned and judged by many as I drown in doubt and uncertainty. There have been so many times in the past year where I’ve tried to ignore the pain and pretend it’s not a big deal, but it is. I can’t shove it down for long, because for me, it comes out as anxiety and anger.

She then talked about community and how vital it is for women to have other women in their lives who will surround them with fierce protection and love and will stand with them through the pain. Nichole Nordeman gave the analogy of female elephants surrounding another female as she gives birth or is hurt, for as long as it takes for her to come out of that vulnerable state. And I realized that last night that on that pew, to my right and my left, I was literally surrounded with women who are that community for me. These girls have been two of my lifelines, keeping me from drowning. I’m so thankful for them and the other women who I have been able to confide in, cry with, and learn from.

The program ended with this song by Nichole Nordeman. The chorus is going to be my mantra going forward:

This is the sound of surviving
This is my farewell to fear
This is my whole heart deciding
I’m still here, I’m still here
And I’m not done fighting
This is the sound of surviving

#NaBloPoMo Day 2: Houston Astros Memories

The Houston Astros took home their first ever World Series title last night, after a nail-biting, dramatic 7 game series against the Dodgers. I’ve been an Astros fan for as long as I can remember, and am so thrilled for this Team of Destiny and our whole city. This morning, I’ve been feeling nostalgic about the Astros, and making a list of my favorite Astros memories, most of them from the late 80s and 90s.

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  • In the 1980s, the Astros had a program for kids called Astros Buddies. We got a duffle bag and maybe a plastic helmet (my memories are fuzzy) at the beginning of the season along with tickets to a a few games. I remember being so proud that I was an Astros Buddy, and loved game days at the Dome. I think most of the games were on Sundays, and my dad and my two oldest brothers would leave after church and drive to the Astrodome. We’d eat ham and cheese sandwiches and drink juice boxes in the backseat of my dad’s white Mazda and then go to the game.
  • My dad loves baseball, and loves the details of the game. He would bring his own scorebook to the games and score the entire game, teaching me his own method. He’d also sometimes listen to the announcer on the radio while we were actually at the games. We always loved counting the Ks.
  • We listened to the Astros A LOT on the radio. In the car, and in the kitchen after dinner while my dad did dishes and swept the floor. I can still hear Milo Hamilton’s voice.
  • My dad definitely instilled in me a love for the game, and especially for pitching. I started playing softball in 1st grade, and always wanted to be a pitcher and be like my favorites, Nolan Ryan and Mike Scott. I even (indirectly) named my 3rd child after Nolan Ryan, because my dad nicknamed me “Nolan” when I started striking batters out. I loved seeing Nolan behind home plate this week, watching the organization that made him a legend make history.
  • The huge scoreboard in the Astrodome- I can still see the fireworks and the Cruuuuuuuuuuuz in lights as the crowd cheered for Jose Cruuuuuuuuuuuuz. scoreboard
  • When I was an Astros Buddy, I memorized the Astros roster and each player’s number. I still remember a few: Billy Hatcher #28, Kevin Bass #17, Gerald Young #2 and of course my beloved #34.
  • I was at the first game Ken Caminiti played as an Astro (July 16, 1987- yes, I looked it up). I was so sad when he died so tragically in 2004.
  • Ryan and I were married by former Astro Craig Reynolds, who is now a pastor. I played softball with his daughter in high school, and count her as a dear friend.
  • The only professional sports game Grayson has ever attended was a Houston Astros game a few years ago.
  • My parents bought 2 seats from the Astrodome and they are now in their game room at the ranch. They are old and stained, but full of history.
  • I’ve never been to a World Series game, but did have tickets to Game 5 of the 2005 WS. The Astros lost in 4 that year. I was heartbroken, and I think it’s why it took me a little longer to jump on the bandwagon of excitement this year. But I’m so glad I did- what a week.

Congratulations ‘Stros. And thank you for a lifetime of memories. 

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#NaBloPoMo Day 1: Here I Go Again

Is NaBloPoMo still a thing? I can’t find any information on it; I wonder if BlogHer dropped it. Well, in any case, a few weeks ago I committed to myself to write every day this month, like I did last year. So here goes…

(I’m already hitting a wall less than 50 words in because hello, it’s Game 7 of the World Series and the team I’ve been watching play for over 30 years is thisclose to their first ever WS championship. I’m a little distracted).

Last November was my first NaBloPoMo, and it was a challenging, fulfilling, yet painful month. I imagine this month might be more of the same, although having a few posts go viral as well as a few more published by a popular parenting site has toughened up my skin for conflict and negative comments.

But I love, love, love to write and I love to dialogue with people who read my writing. I’m thinking about mapping out and scheduling my posts this time, to try to avoid some of the panic of opening up my computer at 7:00 pm every night with no ideas for a post.

Some of my post ideas so far are:

  1. A 2-year project I’ve started for myself, because I have 2 years until I turn 40 (eek).
  2. The first month of my 2 year project- what it was, and what I learned
  3. A recap of the Moxie Matters tour with Jen Hatmaker and Nichole Nordeman (going to this tomorrow!)
  4. Update on my struggles with my faith and the church
  5. Podcast episodes that have impacted me and that I want everyone to listen to
  6. Going back to work part time and how we are adjusting as a family
  7. My thoughts on “work” and what counts as work
  8. Blogging about Grayson and how I feel about sharing his story now that he’s getting older
  9. My continued frustrations and fight with our healthcare system and some of the battles we are fighting right now.
  10. Politics (I’m sure 45 or my favorite VP will give me something rant-worthy this month- haha)

Any other ideas for me? Anything you want to know?

As always, thanks for reading and commenting. One down, 29 to go.

Dear Vice President Pence, I Wish You Would Lead With Empathy

Dear Vice President Pence,

Today, in a ridiculously transparent publicity stunt, you abruptly left an NFL game because some of the players participated in the #takeaknee protest. Of course, it’s absolutely your right to leave an event if something offends you, as much as it is the players’ right to protest what offends them. However, to plan your exit beforehand, knowing that the “offense” would occur, is disingenuous and should be insulting to your supporters. And I don’t ever want to hear another person say that football players should protest on “their own time” when you, the Vice President of the United States, participated in your own protest today, using tax-payer dollars, and tweeted about it on your official @VP Twitter account. Then, your boss himself tweeted that he instructed you to leave the game. Your administration is not governing; you are all  participating in a reality show whose goal is to make and keep the American people angry. And sadly, it’s working.

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I’m not going to argue whether or not #takeaknee is offensive. All protests are, to someone. And I don’t care if you or anyone else boycotts the NFL. But even if football players kneeling during the national anthem  is horribly offensive, why can’t you, and all Americans who also take offense, stop for one minute and consider why they are kneeling? They are kneeling not to spite the flag and what it stands for, but because they want their actual reality to match what it stands for. The flag is a symbol; we don’t revere it because of the cloth it’s made from, but for what it is supposed to represent: liberty and justice for all. And when people with skin darker than you and me, Mr. Pence, say that their liberty and justice isn’t the same as our liberty and justice, I believe them. An experience doesn’t have to be true for me in order for it to be true for someone else. 

Brene Brown says, If empathy is the skill or ability to tap into our own experiences in order to connect with an experience someone is relating to us, compassion is the willingness to be open to this process. This is what I strive to do in regards to #takeaknee and other forms of protest. I have never been treated unfairly or unjustly because of the color of my skin, but I have experienced unfairness and injustice. I understand what that feels like, and therefore, am able to empathize with those who make bold choices to inspire change. I may not always agree with their methods, but I hope that I never dismiss their hurt and that I act with compassion when I speak of them or to them.

Last night, Richard Spencer and his gang of nazis once again marched in Charlottesville (and vowed to keep coming back), desperately trying to spread their message of white supremacy. You made no mention of this on Twitter. Instead, you chose to deflect from the very real problem of racial injustice in this country and take a stand against the NFL. You are throwing your support behind teams who are making standing for the national anthem mandatory. Forced patriotism isn’t patriotism at all. That’s authoritarianism, and it should frighten all Americans, regardless of political leanings.

You have such a powerful platform, Mr. Pence. You could inspire real change in our country if you wanted to. Not theoretical, feel-good pride for this nation, but actual change. What if, instead of leaving the stadium today, you had relaxed, enjoyed some football with your wife, and then tweeted your gratefulness for our freedom of speech and your commitment to making America great for everyone, regardless of the color of their skin? I’m not sure if all that would fit in 140 characters, but think what an impact it would have made.

And, instead of week after week making football the center of our collective attention, use your platform to heal. Help us grieve the 59 people killed in Las Vegas last week. Reassure the millions of American families whose children stand to lose their health insurance that CHIP will be funded. Throw every ounce of effort you have into restoring power and clean drinking water to the people of Puerto Rico. Tell the people of color who are begging you to listen that you believe them when they say America has never been great for them.

The American experiment is just that, an experiment. We don’t stand for our flag and pledge our allegiance because the experiment is over. We keep going, and keep experimenting, with empathy, compassion, and allowing all voices to be heard. And we won’t stop until we create a nation that does in fact provide liberty and justice for all.

Fatigue

The Senate is currently considering yet another ACA-repeal healthcare bill, a bill that would significantly harm millions of Americans. Every major medical association opposes this bill, including the American Medical Association because it violates their oath to “First Do No Harm”. The Medicaid directors from all 50 states have spoken against it. And yet, despite overwhelming opposition, the bill’s passage or failure in the Senate teeters on the edge, and will likely come down to the yes or no vote of a single Republican senator.  

Yes or No. 

I’m so tired of knowing my child’s future and well-being depends on one of these two words, uttered by men and women who for the most part are simply playing a political game.

I’m weary of oscillating between terror and relief, with only a few weeks respite between the two.

I’m exhausted with constantly seeing the words Breaking News and knowing there’s a fairly good chance what follows those words will significantly impact my child.

I’m wasted from the sense of dread I feel when I go through a stack of mail and see my son’s name on an official looking envelop, or receive a call from an unfamiliar number.

I’m worn down from having to describe my son as a series of symptoms, disabilities and diagnosises to strangers whose clicks and keystrokes put him in either an “Approved” or “Denied” category.

I’m drained from not only worrying about my own child’s future, but also the futures of the children of close friends, and so many others who bravely share their stories online.

I’m fatigued from begging my friends and acquaintances to call their representatives, knowing the majority of them won’t, but having faith that those who do will make even a small difference.

I’m numb from realizing over and over again that so many people who proudly proclaim themselves pro-life (both politicians and regular citizens) also don’t consider basic healthcare a fundamental human right.

My spirit is tired, and my body and brain are exhausted. And yet, the stakes are too high for too many human lives to quit now.

Nevertheless, she persisted.

Letters to Grayson: 7 Years

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Dear Grayson,

Happy Birthday! I hope you realized today was your special day and felt extra loved today. Your siblings sang to you and hugged you this morning, and we sent. you to school with cookies for your teachers and classmates to celebrate. Food and treats are so central to birthdays, and it makes me so sad that you aren’t able to eat them. You were in a great mood when you got home from school, and everyone was delighted to see that your teacher had decorated your wheelchair with balloons and streamers, and you were wearing a Happy Birthday ribbon on your shirt.

IMG_3468Each of your birthdays is a reminder of how very lucky we are to have you here. Your life is so precious and fragile, but you are also so tough. The world is most definitely a better, gentler place because you are in it.

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You’ve had a busy year, sweet boy. Since your last birthday, you:

  • Completed kindergarten, which you totally rocked. You started first grade a few weeks ago at another new school and so far, it’s been a really easy/great transition.
  • Lost 4 teeth and have 3 permanent teeth and an adorable hole in your mouth
  • Had fundoplication surgery and switched back to a G-tube from years on a GJ tube. You still retch a lot, but no more vomiting! Yay!
  • Became an advocate for protecting the rights of people with disabilities to have healthcare in this country. Literally millions of people have heard your story.
  • Started consistent therapy at home 4x/week. You amaze me at your stamina- you go to school all day and immediately do therapy when you get home. You work so hard and are making great progress!

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Grayson Robert, being your mom is the greatest joy of my life. You have changed me in both subtle and dramatic ways, and I thank you for that. Happy Birthday sweet G- 7 is going to be the best year yet!

Love,

Mommy

Yes, this is really, really hard sometimes

Here’s a little story from my afternoon…

We were at our neighborhood playground with our neighbor friends. Since Grayson’s speech therapy was cancelled for today, I had driven home for a few minutes to get him off the school bus, then brought him back to the playground to let the kids play longer. I had only been back with G about 10 minutes when it started to rain a little. Most everyone who was at the playground then decided to leave, and our kids decided they wanted to go too. Charlotte was riding home with my neighbor, and I was trying to get the boys to our van, while pushing the wheelchair and lugging the ride-on toy that Nolan had brought.

Nolan (who is a runner) broke free from my hand and ran towards my neighbor’s van. I knew she was right there, so I kept pushing G the other direction on the sidewalk, towards our van, thinking I’d just grab him when I got G parked at our van. Then all of a sudden, I saw Nolan running away from her van, towards the middle of the parking lot where another person was pulling out in their SUV. I don’t think the woman driving saw him, and I panicked. I started screaming and ran for him. I think she saw or heard me screaming because she stopped, just feet from Nolan. I scooped Nolan up and then turned and started to panic even more.

When I had run towards Nolan, I let go of G’s wheelchair and didn’t put on the brake. Now, I see G’s wheelchair rolling towards the curb and a parked landscaping van, and I was too far away to catch it. I sprinted as fast as I could, but I couldn’t stop him in time. G’s wheelchair hit the side of the van, rolled off the curb, then fell over on it’s side, and all I saw was G’s head hit the pavement.

As fast as I could, I ran over to him, and all I remember was screaming “No, No!” the whole time as I picked up his chair. G was doing that silent cry/scream that kids do when they are really upset or hurt, and I was so scared. His eyes were closed for a really long time. I didn’t know what to do; he was so securely strapped in his chair and I didn’t know if he was seriously hurt or not. Finally, he started audibly crying and opened his eyes. He wasn’t bleeding and I didn’t see any knots on his head. His face was pretty red, though.

I really didn’t know what to do, but I had to do something. I decided it was best that I take him home to check him out- I’m so glad we were just blocks from the house. The men who were in the van that his chair hit were so kind. They helped me strap his chair in our van and were genuinely concerned about G. The woman driving the SUV that Nolan ran in front of got out and was helping too. I hope I thanked them enough.

For such a dramatic few seconds, thankfully the aftermath was less dramatic. We got home, and G seems fine. He has some scratches on his face, but I think the chair took the brunt of the impact of the fall. I will say, I’m really impressed with his chair- it really protected him! He doesn’t have any other injuries, but I’ve been so worried about him. I’m really thankful his night nurse will be able to watch him all night tonight.

The whole incident was so scary and I am still so shaken up. It could have easily been so much more tragic: Nolan could have gotten hit by that car and G could have been seriously injured by his fall.

I so often brush off the fact that just managing these three little people is so, so hard. Just keeping them safe is difficult. So many times I tell myself to just suck it up, that lots of people have this many, or more, kids and yeah, it’s hard, but I just need to do it. But tonight, I’m going to acknowledge, and sit with the fact that having a kid with profound special needs, a 4 year old and a 2 year old, is really, really f’ing hard sometimes. Sometimes, there’s absolutely chaos. And I am going to, and do, mess up sometimes. And sometimes things just happen.

There are minutes, and usually hours, of every single day that I feel like I’m drowning. I try to laugh it off, as so many of us do, calling myself a hot mess and trying to just roll my eyes at my imperfections. But the truth is, parenting in this stage can be really lonely, defeating, and scary. When an innocent trip to the playground almost turns into tragedy in an instant, it’s soul-crushing.

I’m not going to give in to mom-guilt, because I followed my instincts. There was nothing I could have done differently. If I had taken the time to put the brake on the wheelchair, Nolan may have gotten hit by the car. And I don’t want to be a hovering mom either; I was a really scared kid, and I don’t want to raise scared kids or be a scared mom. I really believe that what happened today was just a freak series of events, and praise God the outcome was good.

But yeah, parenting little people is hard, and messy. Now please, pour me some wine.