5 Years

Five years ago today was possibly the worst day of my life. I was blindsided with the news that my not-quite two year old finally had a diagnosis, and it was terminal. For weeks (months? years?) after that day, all I could I focus on was Grayson is going to die. To me, the label of Leigh Syndrome meant death. Period.

I wish I could go back and time and shake myself, and show myself pictures of that “terminal” little boy today.

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The little boy who would not only outlive the time that Google told me he had, but who would exceed so many expectations, including mine.

That terminal little boy rides the bus every day to and from First Grade.

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The little boy who works hard in his 4x/week therapy sessions.

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He giggles, whines, and has preferences, just like any almost 7 year old. And yes, he still loves Veggie Tales (sorry about that one, former self).

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Grayson brings more LIFE to our world than almost anyone I know, and nothing about his life resembles death, or dying.

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I took this picture just hours after his diagnosis. Look at his face. Grayson knew before any of us that his disease wasn’t going to define or limit his life.

5 years. I’m so lucky.

Letters to Nolan: 2 Years Old

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Dear Nolan,

Happy Birthday to our baby, the caboose of our family. You are two. TWO! Honestly, I have no wistfulness about your babyhood slipping away or you being the last one; I’m excited for big kid stuff!

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You are a busy guy these days, with lots of budding interests. You love anything with wheels, and call 75% of vehicles “firetrucks”. For your birthday, you got all sorts of cars, trucks and construction equipment. You are in little boy Heaven.

You are talking like crazy now, and are starting to put sentences together. “I don’t like it” and “What happened?” are two of the most frequent we hear. You are still so, so loud, and get louder and louder until you get a response. The two year old tantrums have started too, and they are intense, but thankfully usually can be diffused quickly.

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Nolan, at 2 years old you:

  • Weigh 28 pounds 5 ounces
  • Wear size 24 month and 2T clothing, size 5 diapers and size 6 shoes
  • Have 10 teeth
  • Still go to sleep with a bottle. Shame on Mommy.
  • Start school this week! You’ll be going three days a week from 8:45-2:30. I know you are going to love school and do great
  • Survived your first hurricane less than two weeks ago. What a crazy week it was.
  • Are so funny about your clothes. You know that some of your clothes were your cousin Theo’s and you refuse to wear anything that wasn’t his. You ask me every time I get you dressed: Theo’s? Yes, baby, this was Theo’s.
  • Love to watch Fireman Sam, Little Baby Bum, and Daniel Tiger
  • Always want to be with your siblings. You ask about them when they aren’t around. IMG_3243

Nolan, I’m so excited to watch you grow this year. You are so cute, fun and funny, and I love you so, so much. Happy Birthday Noly Poly!

Love,

Mommy

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A Letter to My Young Children about Racism

I watched you playing in the backyard today, giggling without a care as you soaked each other with the hose. Mercifully, you are oblivious to the turmoil and heaviness that hangs over our country today. At four and almost two years old, you are too young to comprehend the violent events that unfolded this month in Charlottesville. At least today, for that I am thankful. I’m thankful because I’m having a hard time processing those events myself.

This is not the world I expected to be raising you in. I never dreamed that violent, torch-bearing Nazis would be on the list of threats I’d need to worry about. I never imagined I would be leery of letting you watch the President of the United States speak on television. And yet, here we are. I wonder, how did we get here? But more importantly, what do we need to do to change? Because we MUST change. I refuse to stand by and let you grow up in a society that normalizes racism and white supremacy.

I’m just a mom, but I’m your mom. I don’t have a huge platform, but for a few years, YOU are my captive audience. And if I’m going to do something to change the world, I want it to be by raising strong, confident children who are not afraid to be loud, disruptive, and outspoken about what is RIGHT.

YOU CANNOT BE SILENT ABOUT RACISM.

I’m going to teach you that there are a lot of grey areas in life. You’ll need to learn nuance, and to consider other’s experiences and points of view when making moral judgements. Racism is not one of these areas. There is no grey. You pick a side.
You are going to be confronted with racism. It’s not an if, it’s a when. And I hope that my example will teach you that racism, no matter how slight, is unacceptable. You don’t let it slide. Ever.

You will have friends who don’t look like you. I will make sure of it. You aren’t colorblind, and you will notice the differences. Differences are not just tolerable, they are wonderful. People look differently, act differently, and live differently, and that’s GREAT! We don’t learn and grow when we aren’t challenged by and exposed to diversity.

The hard part about all this is that standing up for what is right isn’t always going to be the popular thing to do. You may be laughed at, or talked about behind your back. You may even lose some friends. I’m not going to say, and that’s ok, because it’s not. It hurts, a lot. I’ve been there. But the hurt caused by racism hurts oppressed people a lot worse and for a lot longer.

To tell you the truth, I’m scared. You won’t always be four and two, and sooner than later, you’ll be out in the world, making your own decisions and being influenced by people other than me. And the world can be so cruel. Because of the color of your skin, you won’t face some of the oppression that your friends of other races will. That’s called white privilege, and it’s real. A lot of people don’t understand privilege and will try to tell you it doesn’t exist. Privilege doesn’t mean you won’t face challenges or have to work really hard in life. It means that you won’t face the specific obstacles or hardships that people of other races face due to systemic racism and oppression. You don’t need to feel guilty about your white privilege, but you do need to be aware of it and always be an ally and condemn any and all racism that your friends experience. It’s going to be scary, but you are brave. That’s what being brave means: doing the right thing even though you’re scared.

I know there’s going to be some tough conversations in our future and you are going to have some hard questions about the reality of the world you are growing up in. The truth is, there are some really evil people with some really terrible beliefs. And sometimes, they do terrible things because of those beliefs. And our only hope in stopping them is to prevent them from feeling like they can get away with those things. Again, stand up, act, and be loud. Hate will not win.

White People, This is On Us

I’m a white, middle class, stay at home mom to three young children. My life is busy, and many times, chaotic. There are constant messes, activity schedules, and exhaustion. Racial issues don’t directly affect me and my family, so it would be easy to dismiss this weekend’s events in Charlottesville, Virginia and carry on with life as usual. But I don’t want to raise my children in a country where white supremacists marching in the streets is normal, or in any way acceptable. I want them to read about Nazis in their history books, not on their social media feeds. I’ve also come to realize that when I deliberately choose to turn away from injustice and do nothing to stop it, I’m partly to blame for these monsters feeling so emboldened.

Like so many Americans, I was horrified seeing the images and listening to the white supremacist rhetoric coming out of Charlottesville. And also like so many of my fellow white Americans, I also felt defensive and was tempted to, along with denouncing the behavior of the Alt-Right Nazi protestors, become defensive and completely separate myself from them. I really, really want to say that they are a fringe group, and don’t represent me, my community and my culture.

But I can’t say that.

And I really want to excuse myself from this issue, and believe that I don’t have any responsibility in perpetuating white supremacy in my country.

But I can’t do that.

No, I don’t know any actual Nazis. I don’t have any friends that condone the behavior or hate speech of white supremacists, although I have plenty that have remained silent. And plenty of times, I have remained silent too. I have made a conscious effort in recent years to pay attention and speak out against injustice when I see it. But I haven’t done nearly enough.

I’ve let offhand racist comments slide without saying anything. Because conflict makes me uncomfortable.

I’m surrounded by (and participated in) the mindset that there are schools in our district (with the same standards, and same curriculum) that just aren’t acceptable, but others are the best of the best. Guess which ones have more white kids?

All the churches I’ve attended in my lifetime have been overwhelmingly white. I grew up with images of Jesus as a white man with long, light brown hair, and this is how I picture Jesus in my mind, even today.

I’m guilty of making snap judgments of people based simply on their race and appearance.

Until recently, I’ve never consciously thought about my race, and all the privilege it affords me. I’ve learned that white privilege doesn’t mean that I won’t struggle, or have to work hard in life. It means I won’t have to face systemic oppression and additional obstacles due to the color of my skin. My children’s toys, television shows, books, teachers, and elected government officials overwhelmingly represent their race, and they probably won’t ever question that without deliberate conversations. I benefit from racism, and that’s a really sobering reality to face. 

Although I absolutely believe that the election of Donald Trump has encouraged the rise of these hate groups, racism isn’t a partisan issue. It’s not a liberal vs. conservative debate. It’s a problem with humanity. And the problem isn’t going to fix itself, and people of color can’t fix it themselves. It’s going to have to be white people like me. And like you. We have to use our voices and lives to denounce both Nazis marching in the street with torches, and casual racist jokes around our dinner tables. We have to hold our elected leaders accountable, insisting that they specifically denounce white supremacy by name, even if it costs them votes. We have to do things and have conversations that make us uncomfortable. All of us are responsible for allowing white supremacy to seep into our homes, our schools, and our churches. And if we don’t stop it, it won’t stop. This is on us, white people, and we must do better.

Letters to Nolan: 23 Months

 

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Dear Nolan,

This is the last month I will ever refer to the age of one of my children in months. And honestly, I’ve jumped ahead and in my mind, you are already two. Your independence, silliness, and tantrums, along with your constant talking, put you solidly in the “two year old” category. And lets talk about your talking for a minute. I know over the past few months, I’ve mentioned that you have been talking more and more, but holy cow, these last couple weeks have been a language explosion for you. You basically can say anything now, and you know the words for everything. I can understand most words you say, and you are starting to string two and three together. My favorites are asking you to say all the animal sounds, the people in our family, “thank you” and of course, “I love you”.

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Nolan, at 23 months you:

  • Weigh 28 pounds 5 ounces.
  • Wear size 24 month and 2T clothing, size 5 diapers, and size 6 shoes
  • Have 11 teeth, including the 3 molars you are working on!
  • Still love your bottles of milk, and I’m stressing about how we are going to wean you from them.
  • Love to watch Trolls and Fireman Sam, and ask for them by pointing to the TV and saying “Poppy?” and “Sam?”
  • Have very recently developed a fascination for big trucks and construction machinery, which is a bond you share with your daddy. Whenever you see a digger or firetruck you scream “DADDY! DADDY!” at the top of your lungs. You also love to carry around and play with little Hotwheels cars.
  • Are an independent little guy. Anywhere we go, you just kind of want to do your own thing. We have to constantly watch you wherever we go because you tend to wander off to climb, run, or eat food off strangers’ tables at restaurants (yes, really).
  • Start school next month, 3 days a week, and I can’t wait to see how you blossom. I know you are ready; you are social, and I think you will thrive in a structured classroom and schedule.

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Nolan, I hope this coming month is your best yet. You just keep getting cuter and funnier and I can’t wait to jump into your third year next month. Happy 23 months Noly Poly. I love you so much.

Love,

Mommy

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Letters to Charlotte: 4 and a Half

 

Dear Charlotte,

Age has become a really big deal to you; you refer to anything in the past as either “When I was a baby” or “When I was three”. Well, you are now way past “baby” and even “three”, and here you are, somehow, at four and a half.

In some ways, you are still so little, and I wonder sometimes how you are ever going to grown into a self-sufficient, functioning adult. Then, the next minute you surprise me with your growing maturity and independence. I imagine we’ll be doing this dance for a long time yet.


You’ll be starting Pre-K in just a few months, and I’m excited to see you grow and all you’ll learn before you enter full-time school. You are so curious, asking all kinds of off the wall, imaginative questions about books we read or places we visit. You have gotten really good at writing your name, although for the life of me I can’t get you to write the C facing the right direction.


You love to craft, and to create. You still love princesses, ponies, and all things pink, but you insisted on getting matching summer sandals with Nolan: grey sharks. Your happy places are the ranch, and Chick Fil A, and your happy people are…anyone who will play with you.

You have quite the sweet tooth, and ask for snacks at least twice every hour. Although you asking for them drives me absolutely up the wall, I hope you pronounce granola bar “manela bar” forever.


You and Nolan are quite the pair. Best friends, except when you are not. You both can’t stand to be apart, and are like two puppies with your wrestling and chasing after one another. But your fighting can get vicious: on both your parts. I hope you stay this close forever.

Your relationship with Grayson has improved SO much. You talk sweetly to him, hug him, and bring him toys. I know you have so many questions about him and are still so confused, and for that, I am so sorry. I wish I could answer them for you, and for myself.


I love you, sweet girl. I love your beautiful curls, the freckles on your nose, and your feisty personality. I love the way you love your family, and want to always be around the people you care about. I love your imagination and your goofy questions and the way you ask “Just one more?” when we read books before bed. I love the person you are and the person you are becoming.

Happy Half Birthday to my best girl, precious Charlotte Faith.


Love,

Mommy

I Don’t Want to Call Myself a Christian Anymore

I don’t want to call myself a Christian anymore. To clarify, I don’t want to be known as an American Evangelical Christian. For years, I wore that label comfortably and confidently, as it has been the core of my identity since my earliest memories. But now, that label makes me uncomfortable, and even disgusted, and I want the rest of my life to be defined by something very different.

As a child, my Christian faith was just as much a part of my identity as my brown hair, my shyness, and my love of softball. My family was at church every Sunday, we prayed before dinner, and read the Bible before bed. I went to church camps, youth retreats, and Christian concerts. I attended a Christian high school, and pledged a Christian sorority in college. The Christian label accompanied a good majority of my activities, even through early adulthood.

Today, as a not-so-young adult and a mother, I find a lot about my Christian upbringing problematic. And now, in 2017, my eyes are wide open to how much of the world views my faith, and in many ways I don’t disagree with that perception. I’m horrified and embarrassed at the ways American Christianity is promoting nationalism, political agendas totally contradictory to Christ’s teachings, and a president who in no way represents the Jesus I was taught to love.

The adults who mandated I wear a one piece swimsuit to church camp (to fulfill some arbitrary standard of “modesty“) also cemented a core belief that sex outside of marriage is sinful and damaging. And I believed them. I followed all the rules and wore the right clothes. I saved myself until marriage, which had it’s own far-reaching consequences, regardless of how Biblically I behaved. And then, many of these same adults endorsed Donald Trump for president, even after undeniable evidence that he is an adulterer, misogynist, and sexual assaulter. And I am devastated.

The Christian leaders who taught me that every life is sacred, who sang Jesus loves the little children…all are precious in his sight, are silent or make flimsy excuses about escalating racism and police brutality in our country. They celebrate travel bans that discriminate based on religion, but are all for Christians being able to discriminate because of their religion. They boast tagline in their church bulletins saying Come as You Are…but wait, not if you’re gay.

I will never understand how so many Christians who have worn, marked up Bibles and prayer journals continue to support the political party who seems intent on destroying access to healthcare for the most vulnerable Americans. The poor and disabled in this country (as well as millions of children) are facing massive cuts to Medicaid. Without Medicaid, how are these people going to get the healthcare they need to live? For those that say it’s the church’s job to take care of the sick and poor, where is the evidence for that being a sustainable, long term solution? Because right now, the church is missing the need by a long shot. I don’t believe the church has a responsibility to pay my child’s exorbitant medical bills, but I do  believe as a Christian, I have a responsibility to graciously contribute to the programs that are capable of meeting those needs. Most of the time, that means I pay my taxes so programs like Medicaid can exist to take care of the poor and disabled.

I feel like a child who has discovered her parents have been lying to her for decades. How could I have missed this? How did I not realize how off I was about the religion that shaped the path of my entire life? How do I reconcile that both elders and peers in my faith think a president who bullies journalists, mocks the disabled, and repeatedly disparages women’s physical appearances is perfectly acceptable, so long as he is “pro-life“, “pro-Israel” and “pro-America”? It seems to me that the selling out of an entire religious moral code is a steep price to pay for a Supreme Court nominee or two.

I’ve been told I need to pray for our leaders. What exactly am I praying for? Because prayer alone isn’t going to fix the mess that our country is in. Prayer alone isn’t going to save Medicaid for millions. Prayer isn’t going to allow refugees fleeing terror to enter our country. Prayer isn’t going to give a desperate woman seeking an abortion resources and support so she is able to keep her baby. And prayer certainly isn’t going to take away Trump’s twitter and keep him from acting like a junior high boy with no filter. So yes, I will pray. But I’m also going to do something.

I’m not going to hide behind my Bible, or my privilege, and stay quiet about injustice because it may not impact me personally. I’m not going to show up at church on Sunday, talk about God with a bunch of people just like me, and pretend that makes me a good Christian, or even a good person. I’m not going to stay out of politics, despite being whispered about behind my back by pearl-clutching Christians who find “liberal” and “Jesus” to be incompatible terms. The Jesus I know was loving, fair, and gentle, but he was also bold. And political.

I really don’t know where I go from here. I’m frustrated, angry, and lonely. I’ve lost friends, and the foundation of my entire life has been cracked, probably irreparably.  I don’t know how to answer my children’s spiritual questions, because none of my answers feel genuine anymore. But I’ve decided I don’t need all the answers immediately, and I’m content to be discontent and wandering a bit right now. I may be disillusioned by religion, but I don’t doubt God and His power in my life. I also don’t doubt that He loves me, even with my instinct to walk away. I still want to be a Christian, but need a new definition of what that truly means.

Letters to Nolan: 22 Months

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Dear Nolan,

I honestly barely remember a time when you weren’t here, the littlest bookend of our family. I watched you this weekend, trying to keep up with the big kids, idolizing your cousin and sister. You wanted to do anything and everything they did, and the phrase “Me too” was on constant repeat from your mouth. Your babyhood is gone, and you are speeding towards two faster than I can believe. But we are both ready. I’m with you…big kid stuff is fun!

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Nolan at 22 months you:

  • Weigh 27 pounds, 1 ounce
  • Wear size 18-24 month and 24 month clothes, size 6 shoes and size 5 diapers
  • Have 8 teeth, but constantly have your fists in your mouth, so I think some more are coming soon
  • Have started talking in 2 and 3 word sentences. “Me too” and “I don’t know” are your favorite
  • Have started saying (asking?) “potty” but we haven’t tried letting you go yet. I guess I need to break out the little potty soon since you are terrified of the real one. Sigh.
  • Are finally (mostly) sleeping through the night. Two times now you’ve slept a solid 12 hours straight- hooray!
  • Are really starting to enjoy books and being read to
  • Love the movie “Trolls” and point to the TV and say “Poppy, Poppy” when you want to watch it.
  • Show so much compassion for Grayson, and love to sit by him and try and make him laugh
  • Ask for Charlotte as soon as you wake up, and want to be with her every second of the day.

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Nolan, I love you so much, and am loving watching you grow into a busy, funny little boy. Happy 22 months!

Love,

Mommy

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4th of July and Saying Goodbye

It’s been the best weekend, and I keep telling my kids they need to burn these memories into their brains, because this is the childhood I want them to remember. Charlotte, Nolan and I have been at my parents’ place in the country since Friday with my brother’s family. For the past 5 years, we’ve all lived in the same city, and our kids have grown up together, best of friends. That’s about to change in just a few short weeks, as my brother, sister in law (and one of my closest friends) and my kids’ cousins are moving across the country. I couldn’t be happier for this new chapter in their lives, but I am also so very sad that they won’t be able to meet for playdates or weekends in the country like we’ve been used to. I’m most sad for the kids, because they are so close, and I want them to stay close. The cousin relationship is so special (and fun!) and I don’t want them to lose that. I’m so glad we had this magical weekend to send them off to their new adventures.

We swam A LOT

 

The kids planted watermelon seeds that they cleaned and dried last fall:

 

They ate popsicles and played:

 

 

We built a fire and roasted marshmallows for s’mores

 

 

We had a water balloon fight
And had ice cream (and cocktails!) afterwards

 

We ate a lot of meals outside

 

 

And just enjoyed summertime

 

 

 

 

 

A cousin is a little bit of childhood that can never be lost 
Marion C. Garretty

Education is a Right in America, So Why Isn’t Healthcare?

Dear world leaders, dear brothers and sisters. Education is not a privilege. Education is a right. Education is peace. 
Malala Yousafzai
Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.
 – Martin Luther King, Jr.
Most Americans put a high value on education, including myself. We moved to our neighborhood specifically for the school district and neighborhood schools. Our medically fragile son Grayson, who was born with Leigh Syndrome, a progressive form of Mitochondrial Disease, is currently thriving in public school. Federal law guarantees Grayson a free and appropriate public education (FAPE) in the least restrictive environment. Obviously, this looks different for each child, depending on his disability. Grayson is physically and medically able to attend school full time in a classroom dedicated to students with special needs.

 

Of course, Grayson’s education isn’t really free. Texas public schools are funded by taxes: taxes that everyone pays, one way or another. Whether or not someone has a child attending a public school, he is partially paying for that public school and the education of the children inside.
I have never been told that my child isn’t entitled to an education.
Why? Because education (at least K-12) is a basic right of all American children, according to our society’s value system. For the most part, we all willingly pay our fair share to ensure our (collective) children learn in the best environment, with the latest technology, and the most qualified teachers.
Never have I heard that our family is taking advantage of the system, is a drain on society, or should have planned better so we could pay for Grayson’s education ourselves.
But I have been told, over and over, that my child isn’t entitled to healthcare.
Healthcare is not a basic right, according to our society’s value system. There are a lot of people who consider it theft if a fraction of their hard earned money goes to pay for the equipment, supplies, therapies, nursing, and medications Grayson and other children like him need to live and live comfortably.
I have heard that our family is taking advantage of the system, is a drain on society, and should plan better so we can pay for Grayson’s healthcare ourselves.
Why is education a basic right but healthcare is not?
Not many would disagree that both the education and healthcare systems in our country are broken. Obviously, there are failing and under-funded schools, and more often than not, children in wealthier areas have advantages and receive a better education than children in poorer communities. And then there’s Secretary of Education Betsy DeVos, who wants to privatize our education system with school vouchers, which will undoubetly hurt the poor and disabled children in this country. This is, without a doubt, injustice. But no one will completely deny education from poor children due to their families’ inability to pay. And yet, this is exactly what the GOP wants to do with healthcare.
On our family’s income, we can’t afford private school for our children. Fortunately, public school is an option for us. All three of my children will eventually enroll in public school, and our income won’t be a factor in how many years of schooling they receive, or what they learn in those schools.
Here’s the truth: on our family’s income, we can’t afford all the healthcare Grayson needs either. And this would be the truth even if my husband made twice the salary he does and I had a full-time job. We have health insurance (and yes, we are faced with yearly premium hikes just like so many other Americans), and we pay into the system. The cost of Grayson’s care that private insurance doesn’t cover exceeds our income. Affording his care without Medicaid is completely out of our reach.
Fortunately, Medicaid (through a Medicaid waiver program) is currently available to cover the costs that our private insurance doesn’t cover, costs that we could never afford.
We are not taking advantage of the system, draining society, or robbing YOU of your hard earned income by keeping our child alive, just as you aren’t taking advantage of the system, draining society or robbing US of our hard earned money by sending your children to public school.
 
The United States of America prioritizes the education of our children, and its citizens both pay and benefit from that priority. Why can’t we do the same to make our society healthier and graciously care for its members who are sick or disabled? Let’s start treating and legislating healthcare for what it is: a basic human right.