The Paradox of Motherhood

Is there a more complicated, paradoxical role than being a mother? I can’t imagine any other experience in life that is filled with so much joy, yet at the same time, pain.

The intoxicating joy of holding my first newborn on my chest was simply the flip side of a coin. The other side holds the pain that because of his disabilities, he will never walk, talk, or say, “I love You”.

The pride of watching my daughter explore her creativity through art and pretend play can instantly turn to anger when she stubbornly refuses to comply with my request to clean up her mess.

The delight that my silly, rough and tumble, “all boy” toddler gives me can devolve into exhaustion and a desperate cry to just go to sleep.

I never could have predicted that motherhood would involve the tension of an unbreakable, intertwined bond with my children, yet a yearning to define myself and be defined apart from them. My children are a part of me, but I crave experiences, and work, that are just mine.

Of course, I can’t completely compartmentalize motherhood. My children’s needs, desires, and very existence bleed into every choice I make about how to spend the precious hours of my day. And the cost is high.

The Financial Cost

The financial burden of pursing a dream, or even just adult conversation, is significant. My work is about contributing to the world in ways that don’t involve wiping bottoms, handing out snacks, and breaking up fights. Time away from home to attend conferences or girls’ weekends in another city is crucial for my mental health. But quality childcare is expensive, and I constantly analyze the tangible cost of these endeavors.

The Emotional Cost

The emotional cost of finding myself apart from my role as mother can be excruciating. Am I permanently damaging my kids when I can’t attend all the class parties because I have to work? Do they know I love them unconditionally even when I lose my temper, forget to pack a snack for school, or leave them with their father for a weekend? Sometimes the guilt, both internal and external, overwhelms me.

The Spiritual and Relational Costs

The spiritual and relational costs of my choices have been the most surprising, and painful. Motherhood has directly impacted my faith and what I believe about God, the church, and specific religious teachings. Unfortunately, this has caused division and broken relationships, both in family and friends. There are people in my life who cannot accept my shifting faith and therefore fear for my children’s spiritual development. There is a real paradox in this. The more I change and grow in my own spiritual life, the more confident and free I become. And yet, I mourn the loss of those relationships that were destroyed as a result of that confidence and freedom.

Damn, motherhood is complicated.

This Mother’s Day, I am reminded that I, like most mothers, am doing the best I can. And sometimes my individual best just doesn’t live up to my (or others’) expectations. I am working to balance raising my children with everything they need from me, while still pursuing my individual dreams and goals. I don’t always get the balance right, but I’m trying.

Happy Mother’s Day, friends.

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Hamilton!

 

After 15 months of anticipation, I saw Hamilton on Tuesday! The traveling tour is in Houston for the next month, and my parents got tickets and were gracious to ask me and my sister, along with her husband and my mom’s friend, to be their guests.

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I’ve been listening to the soundtrack for the past 22 months almost daily, and know almost every word. The only time I’ve ever sang karaoke in my life was last August when a good friend and I went to a Hamilton Karaoke event. I still maintain it was one of my highlights of 2017. I’ve heard from friends and strangers who have seen it on Broadway or in their cities, and knew it would live up to all my expectations of awesomeness. And of course, it did. But going in, I thought I had reached the pinnacle of my love for Hamilton, after listening to it, reading about it, and counting down the months, then days, then hours until I sat in that theater and heard the familiar opening notes of the first song. But I was wrong. I love it and appreciate it even more now.

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Seeing Hamilton live, of course I was blown away by the music, the talent of the performers, and the choreography. But it was so much more than that. I’ve been thinking a lot over the past few days about what else makes this particular show such a masterpiece.

The Humor: There are so many genuinely funny lines and characters, and you just don’t get the full effect and timing of the humor just listening to the soundtrack. Of course, King George steals the show in his scenes and he opens the whole show talking to the audience and welcoming them to “My Show”. But Thomas Jefferson had me laughing almost every time he opened his mouth- his timing, facial expressions and the inflection in his voice just slayed me.

The Humanity: I have so much love for John Laurens after seeing Hamilton onstage. There’s one scene in the show that isn’t in the soundtrack, and it brings me to tears thinking about it (probably because it comes right after “Dear Theodosia”, which always makes me cry anyway). And also, every scene with George Washington gave me such compassion for him and the enormous weight that was on his shoulders in leading a brand new country. And the version of “Burn” in this show was the most raw and emotional performance I’ve ever seen- Eliza’s pain and anger was tangible. Every character is so dynamic, and human. There are no absolute heroes or villains in Hamilton.

The Writing: One thing I have always loved about the character of Alexander Hamilton is his obsession with writing, and how he used his writing to literally change the world. It’s just so inspiring to me. The show really emphasizes this, both in the lyrics and the actual performance. There’s a lot of letters, and writing scenes, and paper (paper flying, paper burning, paper being collected). Why do you write like you need it to survive? Because I do.

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The past few days, I’ve been kind of sad- sad because I’ve never loved a piece of art like this, and I’ll never see Hamilton again for the first time. I’m going again in a few weeks with my friend, and I know it will be just as incredible. But I’ll probably be sad after it again, because who knows when the next time will be.

Lin-Manuel Miranda, as he often does, inspired me with a tweet this morning. I’m going to take his advice…let’s go.

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Sunday

Yesterday, I nervously walked into a church for the first time in many, many months. Sunday mornings have become my refuge, my only time of the week that I am truly alone. I love people, and especially my people, but too much consecutive time with people makes me twitchy. As an introvert who doesn’t like to feel needed all the time, I feel a constant tension. It’s a pull between passionately loving my children who feel like an extension of my heart and body, and the internal voice that screams LEAVE ME ALONE!!! when I reach my limit. So for the better part of a year, my Sunday mornings have been about solitude: writing, reading, sipping hot (not re-heated) coffee while being still, and occasionally listening to a sermon podcast while folding laundry. All things I think Jesus would approve of, by the way.

But still, I miss church. I miss the routine of it, the familiarity of hymn and scriptures being read aloud, and the sense of community. I’ve been so hesitant to “go back” though, because really, I don’t have anywhere to go back to. My physical distance, as well as my theology, has shifted since I was going to church regularly. I find myself longing for the church style of my childhood, which may just be a longing for nostalgia of a simpler time- the hymns, the organ, the doxology and benediction. And for some time, I’ve desired to be at a church with women leading worship- I’ve been at churches for so long where such is forbidden, and I long to be somewhere where that is not the case.

So somehow, maybe through divine intervention, yesterday I walked into the little Presbyterian church I attended in my preschool years. While I don’t remember specifics from that time, except for one anxiety-inducing Noah’s ark performance where 5 or 6 year old me was cast as a turtle and told to shake my bottom (nope), the sanctuary felt familiar. At the time, my mom was the choir director at this church, and yesterday as the choir sang, I pictured her leading the choir in their long robes (I haven’t seen choir robes at church in forever!). The people were so kind and welcoming, and the predictability and familiarity of the service was peaceful.

Part of the sermon was on doubt, and the legitimacy of questioning, and doubting. I appreciated this because of where I am right now. I never ever thought I would struggle so much with doubt at this point in my life- doubt about what I believe as well as how to continue on as a “doubt filled believer” as Rachel Held Evans puts it. I’ve seen memes posted berating people for leaving the church because the church is full of hypocrites. I don’t think this is why most people leave the church- it’s not why I left. I left not because of hypocrisy, but because of theology. I don’t want to pour my life into a place that doesn’t affirm women in leadership, or LGBT inclusion, or speak out publicly and loudly about issues like racism, the refugee crisis, or violence. I don’t want to attend church where Biblical issues aren’t nuanced and different interpretations of scripture aren’t welcomed for discussion.

I don’t know where my spiritual and church life is headed, or if I’ll go back to that little church. I’m trying to give myself the grace that Jesus has given me. I know he is patient, and faithful in this painful, yet hopeful process.

Christian and Progressive: Yes, Franklin Graham, I Can Be Both

Hey Christians- you do know they think we’re assholes, right? Yes, they: the rest of the people in this country just trying to live their lives, but who are constantly berated because their lifestyle, political views, or religion don’t fit in the box labeled “Christian”. They want nothing to do with a belief system that preaches love thy neighbor, but in practice, only if that neighbor looks like us, lives like us, agrees with us and worships the same God as we do.

Franklin Graham, one of the loudest and most recognized evangelical voices and unapologetic Trump supporters, boldly declared on Thursday that someone with a “progressive” label cannot also wear the label of Christian.

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Excuse me, what?

I’m a Christian. For my entire life, I have been taught a Christian is a person who accepts the gift of grace given to to them by Jesus’ sacrificial death and resurrection, and therefore lives their life according to the teachings of Jesus.

Did I miss something? Is there a verse in the Bible that voids my ticket to Heaven if I vote for a “Progressive”? Maybe it’s in Two Corinthians; I need to check.

But seriously, I consider myself progressive and vote for progressive candidates not despite being a Christian, but because of it.

I vote for politically Pro-Choice candidates because protecting life should be about so much more than being pro-birth. How is criminally punishing a woman because of a choice she made for her body spreading the good news of Jesus and his message of forgiveness and mercy?

I vote for candidates in favor of healthcare for all, because of Jesus’ example of healing the sick and disabled, and touching and ministering to lepers. How is denying human beings lifesaving and preventative medical care simply because of their inability to pay in line with what Jesus would do?

I vote for candidates in favor of common sense gun laws and regulations, because Jesus said Blessed are the Peacemakers. Jesus never said to arm yourself with an assault weapon thats only purpose is to kill.

I do not vote for candidates just because they are Christian, because Christians aren’t the only people who do good and make positive change in this country. Jesus himself told the story of The Good Samaritan, and spoiler alert, it wasn’t the religious leaders who were the good guys.

If calling myself a Progressive gets me kicked out of the Christian Club, then consider this my resignation. I am fed up with professed Christ-followers using Jesus and their moral beliefs to continue the toxic othering of their neighbors.

I have to believe that although Franklin Graham may be one of the loudest (and most obnoxious) “Christian” voices spouting off the nonsense that Progressive and Christian are mutually exclusive, there are plenty of people shouting just the opposite. May our voices collectively drown out all the bigotry, exclusiveness and falsities that are ruining the reputation of Jesus Christ.

Come on Christians, let’s not be assholes anymore. 

Life Lately

I have barely written here this year, and I miss this space. The truth is, I’ve had quite the vulnerability hangover for months now and every time I sit down to write something vulnerable here, I just chicken out. Perhaps that’s for the best though, at least right now. But, there is quite a bit going on, both mundane and meaningful, and I wanted to document it here, if only for my future memories.

  • THANK GOD IT’S FINALLY SPRING. Seriously, I have never been so aware of how the change of seasons affects my mood, and my children’s moods. With the warmer weather (but not a billion degrees yet), we have been outside constantly, and am loving it. Charlotte got a new bigger bike, and Nolan learned to pedal, so they are zipping around the cul-de-sac hours a day with our neighbor besties. friendsEasterbikeZac
  • I have been writing quite a bit over at Houston Moms Blog. Speaking of vulnerable, I wrote a piece a few months ago that got a lot of attention and inspired some really good conversation. It’s titled Why I Won’t Raise My Children in the Purity Culture That Raised Me. And, as I do, I have totally deep-dived into the topic since then and have already written part 2, 3, and 4 in my head (only half kidding). There are SO many layers to this issue and how it’s impacted my life. The good news is I’ve discovered I’m not alone- there is a whole community of people who are questioning the purity culture that raised them.
  • I have a new nephew! Baby Leo was born last week to my brother Peter and his beautiful wife Janice. He was born 8 weeks early, so has a long road in the hospital ahead, but he is doing as well as he can being so premature. They are in Australia and have never felt farther away. I can’t wait to hold this little guy when they come visit next fall.

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  • Last weekend, I participated in my first political protest/rally: March For Our Lives Houston. I (a mother with small children) marched with my parents, my parents’ pastor, a 4 year old, a 16 year old high school student, and a good friend and her son who was the March coordinator for his high school. This little group represents the reach of this particular issue: people from all ages and stages of life are affected and want change.  The issue of gun control is really nuanced: we can debate all day long about the 2nd amendment and an individual person’s right to own guns, and which guns. Most of the people marching yesterday don’t want to take away that right- we just want laws in place to ensure that a person’s right to own a gun doesn’t supercede our children’s right to attend school without the threat of being murdered in their classrooms.I realized after the March that not only do gatherings like this give us an opportunity to exercise our 1st amendment right, but they also allow us to (literally and figuratively) bump up against people of all different walks of life. There were Christians, Muslims, and atheists, old and young, conservatives and liberals, students and teachers…all packed in tightly on the streets, yet walking peacefully. It was a really profound experience. Since one of my platforms has been getting people to think about what the term “Pro-Life” really means, I decided to make my sign with that in mind:
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  • I realized I never wrote here about our appointment with Grayson’s Mito doctor to discuss his genetic results. We already knew the basics from our visit with his first neurologist, but found out that he is only the 12th person in the world to be identified with the gene defect, and the only in the US so far. He will still be treated at the Leigh Syndrome clinic, and we can still identify him as having Leigh Syndrome, although it’s not classic Leigh. We had the little kids’ blood drawn last week to test to see if they are carriers, and we’ll get those results in about 6 weeks. They were rockstars for the blood draw (poop emoji band-aids and lollipops helped a lot). blood draw
  • Grayson gave us a real scare on Monday. I was pulling into work and got a call from his principal that he had just had a seizure and that they had called 911. Apparently during the seizure, somehow his airway had gotten completely blocked and he had no oxygen and turned blue. Both the school nurse and principal told me later that it was the worst/scariest seizure they had ever seen (not the seizure itself, but the blocked airway). Thank goodness, when they paramedics got to the school he was breathing again and checked out ok. We took him home and I held him most of the rest of the day. He has been fine the past two days, but I know everyone involved is still really shaken up. Grayson’s PT wrote an amazing guest post for Houston Moms Blog today about her job and included Grayson in her post. Heather

How’s your life lately?

Letters to Nolan: Two and A Half

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Dear Nolan,

Happy half birthday to my silly, handsome guy! Today you are two and a half, but you have been “correcting” me all day saying you are five and a half. You want to do everything Charlotte does, so it’s no surprise you want to be her age too.

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Nolan, you are in a sweet spot right now. You are in one of my favorite stages- you are talking in paragraphs (no more guessing what you want!), can follow most directions, and are starting to do more “big kid” things. I no longer have to hover over you at the playground- you want to go “Higher! Higher!” on a regular swing. You are sleeping in a big boy bed, like to listen to picture book stories (not just board books anymore). And you are just so, so cute and funny right now. My favorite story from the past week is when I tousled your hair and said “Hi Little Guy” and you very indignantly said, ” I am NOT a little guy. I’m Nolan. I’M A MAN.”

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As independent and opinionated as you are becoming, you are still really sensitive. You love to be held, cuddled and reassured. Your daddy or I still rock and sing to you before bed. When something scares you, you let us know and want to be held tightly. You give the best hugs and high fives.

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As I said before,  you want to do everything Charlotte does. This both delights and annoys her.  You spend half your time carrying around princesses and wearing your sister’s pink shoes, and the other half playing with your trucks and turning sticks into weapons. You also love Grayson and lately, have been so sweet to him. You’ll hug and kiss him when he gets home from school, and one of the highlights of your day is “helping” him off the school bus.

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Nolan, you are such a sweet, busy, precious part of our family. I love you so much and am  already loving two and a half!

Love,

Mommy

Unexpected Answers

Today is Rare Disease Day- I should have done more to raise awareness, like change my FB profile picture or share facts about rare diseases all week. But, I didn’t, and my excuse is I’ve been slightly overwhelmed by the rare disease that we live with all 365 days of the year.

Ironically, this morning, on Rare Disease Day, we got some potentially huge news about Grayson and his disease.

Six years ago, in 2012, Grayson had a vial of blood drawn for a big genetic test. He was a year and a half old. At the time, we had no idea what Grayson “had” and all I wanted was for that test to give us answers. Tell me what to call it. Give me a name for the collection of symptoms my baby struggled with and a reason why he wasn’t meeting any milestones. It didn’t happen.

The results of that genetic test came back inconclusive. Grayson had some genetic variants (as do all of us) but none of them could specifically be labeled as disease causing. It was so disappointing at the time, but eventually we all but forgot about it. Grayson was clinically diagnosed with Mitochondrial Disease, and a few months later, after an MRI of his brain, with Leigh Syndrome. So we finally had a name.

At first, the diagnosis of Leigh Syndrome was horrifying- all I could focus on was the “terminal” label that comes with it. It took several years of processing and grief, but eventually I had peace, even comfortability, with the diagnosis. I made friends with other Leighs families, got involved in support groups, and formed excellent relationships with his doctors. And last year, 2017, Grayson had an amazing year. He went the entire year without a hospital admission except for a surgery he had in April. He was thriving in school, and making progress in therapy. We were coasting.

I’ve barely thought about genetics in several years. We had a diagnosis, Grayson was doing fantastic, so finding a genetic cause for his disease just wasn’t something I thought or really even cared about anymore.

A few weeks ago, all that changed. I had just dropped the little kids off at preschool and pulled out my phone. I had a text, email and voicemail from Grayson’s original neurologist that had ordered that genetic testing all those years ago. I hadn’t spoken to him since 2012 (we stopped seeing him when we started seeing the Mito specialist, who is a neurologist as well). The basic message was “New Findings on Gene Test- please call”.

I called his office and they immediately transferred me to talk to the doctor. If you are in the world of medically complex kids, this does not happen. You don’t just get put through directly to a doctor. But he had big news and wanted to be the one to tell me.

Basically, geneticists have reclassified one of Grayson’s gene variants. This variant was previously classified as benign, but has now been reclassified as disease-causing. So, this means that after 6 years, we finally have a genetic reason why Grayson is who he is.

This morning, we took Grayson to see the neurologist to go over the report and get a better understanding of what all this means. He used a lot of big words and it was hard to piece together some of what he was saying, but I think I have a basic understanding of the current findings. I googled the disease (Hypomyelinating Leukodystrophy Type 9) when I got home and the list of symptoms and the timeline when they show up is exactly what we’ve seen with Grayson. There are specific things like, “Spasticity, more apparent in the lower limbs” ,”nystagmus”, “onset in the first year of life”, and “thin corpus callosum”.

What I don’t know is what this means for what we call “it”. Does he still have Leigh Syndrome as well as this new diagnosis? I don’t know. We have an appointment with his Mito doctor next week so we will know more then. This will impact our other kids and their future reproductive decisions because there is a good chance they are carriers of this mutation. I also don’t know what this means for Grayson and possible treatments, or his life expectancy. I feel like this “answer” has now just flooded me with even more questions.

Regardless of what diagnostic label is on his medical chart, Grayson is still Grayson. Before anything else, he’s my son- my perfect 7 year old little boy who captures the heart of everyone he meets.