A few months ago, I went back to work part time. I work while the kids are in preschool Mondays, Wednesdays and Fridays, and on Sunday afternoons. It’s been a really good transition for me, and actually really easy emotionally since the kids would be in school anyway. I love being away from the grind and monotony of being a SAHM for a chunk of the week, thinking about and talking about things that have nothing to do with motherhood.

I used to love being a SAHM, and in some ways, I still do. But as it inevitably does, life has changed. I no longer have a core group of friends with really little kids who are always up for a trip to the zoo, the park, or even just to hang out at one another’s houses. Some have gone back to work full time, a lot have kids in elementary school, and many just live too far away to get together regularly. And to be honest, the conversation I crave from my friendships right now isn’t conducive to the chaos that preschool playdates always create.

And right now, my SAHM hours with Charlotte and Nolan are intense and not much fun most of the time. A lot of this is my own anxiety, especially around my house, but the ages and personalities of the kids have a lot to do with it too. I’m just so weary of having to negotiate EVERYTHING, from the color of their breakfast plates to who gets to turn on the water faucet for their bath (Spoiler: it’s both of them. But then they fight over who gets to turn it on first). There are so many precious and memorable moments- they are both so cute and hilarious, but geez, they wear me out.

I have flirted with the idea of getting a full-time job, but up to this point, that hasn’t felt right. The little kids love their preschool and weekly Bible study class, and as much as they frustrate and exasperate me every day, I know this time at home with them is so fleeting. Charlotte will be in kindergarten next year, and even though school is her thing and she does really well with structure, it does make me a little sad that in less than a year, she’ll be away from me for the majority of her days. (And I say that now, when she’s sleeping. The majority of her waking hours I say GO TO SCHOOL.)

Then there’s Grayson. I feel so privileged to be able to be at home with him when he’s home, to be here for his therapy sessions, take him to doctors appointments and spend time just holding him when I can. On top of all that, there’s a ton of administrative-type work when you have a medically fragile kid- endless phone calls to insurance, keeping up with his medication refills and supply orders, making appointments, applying for medical coverage/grants, etc. Then there’s the unexpected hospital stays, which thankfully have become way less frequent than they used to be, but they will always eventually happen. I know people do all this and still work full time, and I honestly don’t know how. It’s so much.

So for now, “work life balance” means a little bit of work outside the home, a little bit of work on the computer at night, and a lot of my kids being little, and really intense. This most likely will change in a few years, but for now, I’m trying to be content in this season. These days are so, so long, but I still feel so lucky that I get to be home with them.

Today was a big milestone for Grayson: he had his first bite of food in 6 years! G stopped eating in the fall of 2011, when he had an NG tube for 7 weeks. As much as we tried, after a year of fighting to drink milk and eat food, only to throw up almost every bit, he was just done. So we didn’t push it. He gets all his calories and nutrients through his formula in his G-tube.

G has been working with an amazing speech therapist twice a week for a year now, and his progress has been slow but steady. She does a lot of oral stimulation to train his tongue, lips and mouth what to do to make sounds as well as to swallow. G is having a swallow study done in a few weeks to determine if it’s safe for him to start pleasure feeding trials. He most likely won’t ever eat for calories or nutrition, but we are hoping he can start eating purees for fun and to participate in meals with his family.

G’s therapist suggested we start practicing for the swallow study, so the introduction of food doesn’t freak him out. So today, she gave him 5 teeny bites of applesauce as well as a little bit of water on a spoon. He spit a lot of it out but did swallow some! His first reaction to the applesauce is so funny, but it must be quite a shock having not tasted any food in 6 years!

I will admit I got a little emotional watching him do something that I thought he would never do again. It also brought back happier memories of feeding Grayson, like the first time he ate rice cereal at 6 months old.

I’m so excited for Grayson and what this could mean for his quality of life. It’s a small thing that today feels really really big.

I remember when I was 10 years old I found my first grey hair, a wiry strand sprouting wildly from the top of my head. I actually found it kind of cool and something that made me unique, and I would occasionally find the greys throughout my teenage years and just pluck them out. No big deal.

Fast forward almost three decades from that first grey sighting, and the grey hairs aren’t “occasional” anymore at all. I have quite a bit of grey, and my hair is really dark, so it’s fairly noticeable.

And at 38 years old, I’m trying to decide how much I care that I’m going grey, and if it’s worth the time and money to do something about it.

I’m all for women deciding for themselves what they want to do with their own bodies. I wear makeup almost every day, because I’m self conscious about the imperfections of my skin and just feel better about myself when I have it on. Last summer, I did 6 alternating treatments of chemical peels and IPL facials (extremely painful) to reduce the sun damage on my skin. My face does look remarkably better than it did, but it’s definitely not flawless. So my daily makeup routine continues.

But for some reason, I’m just not as self-conscious about my grey hair as I am my skin. I go back and forth between a half-hearted “I really should get my hair colored” and “Eh, whatever.”

And to be honest, it’s mostly about the time and money. Both time and money are extremely limited in this season of my life, and there are always a long list of priorities ahead of spending several hours in a salon chair and lots and lots of dollars on a professional coloring. Also, my hair has always grown REALLY fast (a blessing, I guess?) so I think I would just have to do it so often to maintain it looking really good- and that’s overwhelming.

And yes, I could do it at home, and have many times in the past, but eh, it’s so messy and also time consuming (not to mention I’m terrible at picking out the right color). So I just don’t anymore.

Aside from that time it takes to sit in a salon, I’m weird in that I really don’t find having my hair done relaxing at all. I’ve realized since I had kids, I do not like people touching my head or my hair. This is probably because this is all that toddlers do- get in your face and put their sticky fingers in your eyes, mouth and hair. Bleh. Whenever I do get my hair cut, I never let them blow dry it because it just makes me antsy and uncomfortable.

And I don’t think (maybe incorrectly) that my grey hair looks that bad on me. It does concern me some that maybe it makes me look older than I am, but not enough to actually do something about it today.

Do you think I’m crazy? Should I just make the time and spend the money to cover up the grey? What are your thoughts and solutions about going grey (especially before 40)?

I’ve been blogging for seven years, and the archives of this blog contain a huge volume of stories about me and my kids, especially Grayson. When Grayson was really little, and especially leading up to his diagnosis, I documented nearly everything about his life. If you followed along back then, you read details of doctors appointments, doctors’ theories on his diagnosis and prognosis, and how many times he threw up a day (in case you’ve forgotten, it was a lot). I’ve made dear friends and secured a support system online because I chose to be open about our journey. And I have no regrets.

There’s an ongoing debate in the mommy-world about children’s privacy online and how much is too much to share. I’ve always been on the more liberal side of the debate- I’ve never felt like I’ve crossed a line or compromised Grayson’s dignity. And I’ve never felt uncomfortable sharing pictures of him or having strangers read his story.

But Grayson is getting older, and I’ve been intentional lately about thinking about what parts of his story might not be appropriate to share anymore. And I’ve also been thinking about the purpose of his story being shared, apart from the support and feedback I get when I write about him.

Dignity

Of course, my number one concern about sharing publicly about my children online is to protect and preserve their dignity. In 10 years, I don’t want my kids’ classmates to Google them and read anything that could potentially embarrass them or be fuel for bullies’ taunts.

But with Grayson, this won’t happen. And that’s both an overwhelming relief and a heartbreaking reality. If his disabilities were different, and if he were more aware and self conscious about them, the conversation about privacy would be a lot more complicated. I know of some bloggers for whom this is very much a reality: their children will be able to Google themselves and find out what their mothers wrote about them and their struggles. And it’s hard, because a lot of our support comes from sharing with each other, but we do have to consider our children’s feelings and future feelings as well.

I don’t want to post anything about Grayson that I would definitely not post if he was a typical 7 year old. So, that means no pictures of him in his diaper or being bathed, and no details about poop (look, poop is a whole thing when your digestive system doesn’t function properly, but no one wants intimate details about that).

I don’t feel the need to write about every single health issue Grayson faces like I used to. This isn’t “new” anymore, and I rarely have the feeling that I need to document every detail of his medical history in this space.

Mainly, I want people to see Grayson as a person, not a disease. He’s not my special needs son, he’s my son (no modifier) who happens to have Leigh Syndrome.

Purpose

I’ve had two blog posts go viral this year. You can read them here and here. Both posts were re-published on HuffPo (and one also on Scary Mommy). The second one was shared on News and Guts and within minutes had hundreds of shares and comments. From my stats on this blog and seeing how many times they were shared from those other sites, combined they have been read over 3.5 million times.

Both of these posts feature a part of Grayson’s story, and clearly state that he is the reason I’m so passionate about healthcare being a right for all Americans.

I did not have Grayson’s permission to share his story with 3 million people. He did not give me consent to allow his picture to be shared across the Internet. So was I wrong to do it?

I don’t think so, and here’s why:

Grayson is a human being with intrinsic value and worth. Nothing he does or doesn’t accomplish changes that. No amount of money required to keep him alive diminishes that. If he lived his whole life and not one person knew his story, he would still be precious and valuable.

But I see my writing about Grayson and sharing his story with whoever happens to read it as an opportunity for his life to have a greater purpose. There are people whose minds were changed about healthcare legislation because I wrote those two posts (I have proof in my inbox). People seeing Grayson’s picture gives the implications of a bill a real, human face, and transforms the political into the personal.

Grayson will never speak to millions of people on his own, but I hope that through my words, I do his life justice and fulfill a greater purpose for him.

As Grayson gets older, and the blogging world continues to change, I will have to reevaluate what and how publicly to share about his life. But for now, I feel good about the size and scope of his digital footprint.

A year after the presidential election that transformed our country and political discussions into a raging dumpster fire, we haven’t made much any progress in returning civility to our discourse. We can’t seem to separate people from their positions, and refuse to see the wide variety of human experiences behind hot-button issues. Nuance gets lost in so many of our political, religious and cultural debates, and we categorize one another into strictly defined boxes: we are either For or Against, Pro or Anti, Conservative or Liberal, Fundamentalist or Progressive.

We divide into teams, suit up, draw our lines in the sand, and refuse to budge, even when confronted with statistics and factual information that proves us wrong. We cower behind arguments of “Slippery Slopes”, “The Bible is Clear” and “Respect for the Flag”; meanwhile, we are degrading the humanity of our neighbors and caring more about rules and ideologies than living, breathing people.

And then we wonder why our country is in a constant state of vitriol.

In order to affect real change in this country, we have to stop living like everyone fits into a clearly defined box, and if she isn’t in our box, she must be the enemy. And more importantly, we must recognize that very few issues are black and white, with a “right” side and a “wrong” side. The vast majority are varying shades of grey.

Issues are complicated, because they are created by complicated, flawed humans. Too often we cope with the complex nature of moral and political debates by retreating into our boxes and doubling down on our Black or White stances. Living in the grey spaces is much more complicated, messier, and to be honest, a lot lonelier.

Instead of staying stuck as a country of ORs (you are for this OR against it), we need to start making space for a lot more ANDs. For example,

We can advocate for much stricter gun control laws and regulations AND respect the (true purpose of the) 2nd Amendment AND believe that no one should be able to purchase an assault weapon AND respect those who are responsible, safe gun owners. 

We can mourn and offer our thoughts and prayers to the victims of the latest mass shooting AND immediately start a conversation about real, actionable solutions to stop this from happening over, and over and over again. 

We can be Christians AND be disgusted by Christian leaders who preach nationalism and loyalty to a political party, no matter the cost or defamation to Jesus’ name. 

We can believe abortion is morally wrong AND disagree that making abortions illegal is the best way to reduce them AND weep for the loss that results from abortion, AND still love and support a woman who has made a choice that maybe we would not have made. 

We can have the upmost reverence for Scripture AND realize that on many, many things it is not clear, and can be interpreted differently. 

We can respect our flag and our anthem AND rank that respect behind the value of actual people and injustices hurting those people.

We can hold law enforcement in high esteem AND appreciate the risk and sacrifice of their job AND recognize that there are deep-seated, systemic injustices in their profession that are killing American citizens at an alarming rate. 

We can teach our children our moral values when it comes to sex AND provide them with education and resources to make informed choices about their own bodies. 

We can disagree AND remain civil, and even friends. Really, we can.