How Abigail Adams Helped our Relationship~the tale of a school project.

The Historical Figure Bottle Project

The second graders at Aubrie’s school were assigned a person in history who made an impact in American culture. Aubrie was assigned Abigail Adams.

Abigail was known for being the First Lady of President Adams, the second president of the United States. She is also considered to be a “founding mother” of America.

During the Revolutionary War she was moved with compassion after the death of a friend to melt her own pewter spoons down for musket balls to distribute to the forces.

She was not educated, so she wasn’t a very good speller but did all she could to improve (note the spelling book on Aubrie’s bottle).

We both learned a whole lot, both about Abigail and ourselves.

This project, as school projects sometimes tend to do, stretched me and my Gal during it’s creation. We weren’t  our “best selves” with each other at moments. Eye rolls and deep sighs. Dramatic head flops onto the breakfast table. Deep breathes that neglected to hide irritation.

During one particularly frustrating moment Aubrie went to her room and I went for a drive.

As I sat in my car staring out the windshield into the woods, I just broke.

“Why am I so upset about this, God?”

It was then God showed me where I was believing a lie that her frustration was about me being a “bad mom” and “bad teacher”. And she was believing a lie that she was a “bad student”, “not creative” and “not smart”.

The lies we individually believed created chaos and emotional distress for both of us, though neither of us believe the lies about the other.

After that hour of alone time and some good healthy reflection, we were able to take a walk together, just the two of us. We shared how our hearts were feeling and while those feelings were real…they were not based on Truth.

Truth says:

I am a good mom. (Psalm 127:3) I am a good teacher. (Proverbs 22:6) I am joyful. (1 Peter 1:8) I am trustworthy. (Ephesians 4:15) I am treasured. (Ephesians 2:10) I am loved. (Jeremiah 31:3)

Truth says:

Aubrie is wise. (Psalm 111:10) Aubrie is creative. (Exodus 35:30-33) Aubrie is a good daughter. (Ephesians 6:1-3) Aubrie is a good student.(Proverbs 22:6) Aubrie is treasured. (Ephesians 2:10) Aubrie is loved. (Jeremiah 31:3)

There are moments in life that can humble us enough to say, “Man, I really messed that up. Can we try again? With boundaries this time?”

A good “top secret code word” goes a long way, I’m learning! We decided together that when we say our secret word it means, “I’m feeling frustrated. You’re a good mom/daughter. You’re a good teacher/student. I love you. I just need a break to remember who I am.”

I hope I keep practicing this with both our girls.

I hope I keep telling them “I’m sorry.” when I’ve made a mistake. I hope their response is always, “I forgive you too, Mommy.”

I hope God keeps showing me the lies so I can keep speaking Truth into their hearts.

I have no greater joy than to hear that my children are walking in the truth. 3 John 1:4

Abigail Adams (as a bottle)-created February 8, 2020 May she always (help us) speak Truth


An open letter to my daughter with Down syndrome this World Down Syndrome Day

Dear Charlotte Grace,

My sweet Lovie Dove. It’s incredible how you’ve grown these past 14 months. The day we welcomed you into the world was beautiful, perfect even, in every way. You were a strong and “mighty warrior” already fighting with your very first breath. While we didn’t totally understand just what was happening there in that sterile NICU room, and we had moments of grief for what our own human minds temporarily believed were limits placed on you, we know every person we encountered there was for you, just like we were.

We had prayed so long for you. We had been to so many doctors and had so many tests. We had prayed with so many friends and even our Pastor. We wanted you in our lives. I remember praying things like, “If it’s Your will, give us the baby you want us to have. Let them be yours from the start, loving and joyful.”

I remember praying for mommy and daddy too. We prayed for trust in learning His ways. We prayed we would be more patient parents and with eachother. We prayed we would be given a gift of one ministry in His name for our family, our “one flesh destiny”.

My dearest Charlotte you have, just barely, begun to be His answer to these prayers in your short time on this planet.

“You, my dear, are brilliantly crafted.”

See, you have Down syndrome. And sometimes the world doesn’t understand what that means, but we do. We know that we really are “the lucky few”. We know the One who made you, made you perfectly in His image. We know and trust that the path He has laid before us, and you, is for our good. We know we have a great responsibility ahead of us, being gifted such a precious and rare beauty. Like a geode, people sometimes see just the outside and miss out on all that is within if only they’d just take the time to look. You, my dear, are brilliantly crafted.

Now the world, is just beginning to understand what this means. The world has discovered what He already knew about you long before you were a glimmer in our eyes. The world now knows that you, and people made like you, are so full of joy. The kind of joy that changes people. The kind of joy that so many of us admire and yet are just starting to see with eyes of longing to have for our very own, hoping one day it can be matched in our own hearts.

My dear Charlotte, we promise as your parents to be great guardians of the light you shine for Him. We promise to share the depths of who you are with your sister, family and community too. And we promise to always remind you Who made you by His design. For you are His masterpiece and are so beautifully intentional.

So today, to celebrate upcoming World Down Syndrome Day, we pray you know just how treasured you are. We hope you know He has big plans for you. We believe and trust you are going to be a Mighty difference maker.

We hope the world will see you through His Mighty eyes.

All the love and affections,


“Fake it til ya Make it” The problem with corduroy pants.

I recently had a conversation with a friend about this “fake it til ya make it” phenomenon. Over the years I have had this phrase handed to me an extensive amount of times. When I was thrust into, what would be, the beautiful world of special education, but had no knowledge of what I was doing…”Fake it til ya make it”. When I entered into full-time ministry …”Fake it til ya make it.” When I had my first baby girl and was terrified…”Fake it til ya make it”. The cliché seemed to follow me around like it was my shadow, only it was one I learned I did not care to play with.


For me, every time those words were spoken to me, they always left me feeling a little bit like I was walking around in a pair of corduroy pants (where my 80’s kids at?!). It was stiff and made confusing noises every step of the way. It made me feel as if I was being forced to choose “I’m not good enough as I am so I will pretend to be a person I am not until I become someone else’s idealized version of me.” and “I don’t know what I am doing so I’ll pretend I do until I figure it out on my own instead of asking for help and risk looking weak.”

I am sad to say I tried on those pants for a while. Although they confused me, the allure of falsely being cool enough to look like my life was a perfect Michelangelo when really it was a chaotic Picasso made me think, “Maybe there’s something to these trousers.”

I rocked those pants so hard they wore those fashionable holes in the knees. They looked real cute. I looked real cute too. Like a boho runway model sport’n a Farah Fawcett clothing line. Except those pants made me crumble. Those “Choose me because I make you look like you’ve got your whole life figured out AND make you look like you’re waayyy awesome” pants made me almost lose my life. Ignoring the fact that I couldn’t cope with the stresses in my life on my own gave me total fake power; power that lied and stole away my joy.

The simplicity of a rhyme somehow always lends itself to the perception of truth.

Now, let me say, I am positive the people in my life who ever handed me that phrase, or ones that implied the same, only meant to help. They could see there was a struggle brewing and the simplicity of a rhyme somehow always lends itself to the perception of truth. But, as my dear friend Janet Newbery asks, “Do you always take everything that is handed to you?” And the truth is, I choose to put them on day after day.

Fortunately for me, my eyes were opened to that ridiculous fashion faux pas long before our sweet baby girl Charlotte Grace was born with Down syndrome. I had time to heal from the detrimental wounds created when I made those super cute holes in my jeans. I am so very thankful for those years I had to stitch myself back together. I am even more thankful for the people who chose (and choose) to see me every day as my true self and still love me in my ugly pants.

If not for the seasons of “learning to struggle well” I am quite certain I’d still be trying to squeeze my post-pregnancy self into those tricky cords. The world of Down syndrome can often be one of striving for us moms. The temptation to be a “perfect parent” can be even greater for those who have a child with a special need. My life is not “harder” but my life does look a lot different than it would otherwise. It’s more schedules and planning than I am accustomed to. Anyone who knows me knows I am fly-by-the-seat-of-my-pants (pun intended) kinda gal. I like the adventure of the unknown. I like being able to say, ” Let’s go on an adventure because it’s ‘Mediocre Monday’ and who knows where the day will take us.” However, life with a child with special needs often carries preconceived…well…everything. The doctor’s visits, therapy, the planning for the future. Those things are hard for me and so it’s all very tempting for me to share only the best of all life has handed us. If I do that, I look like I’ve got it all figured out, right?

The truth is, my very best today is not the same as my very best yesterday, and that’s ok with me.

The truth is, this journey is scary sometimes. There are fears about health complications, financial worries about the future, how to balance our time so our older daughter never feels underappreciated, how to care for our marriage during all these stressors. The truth is, I often haven’t a clue what I’m doing or who’s advise I should take. The truth is, my very best today is not the same as my very best yesterday, and that’s ok with me.

This journey is also beautiful; not just in the way that we have this amazing baby girl with Down syndrome, or in the way that we get to see our older daughter become this awesome big sister and not just how we all get to learn how to have more compassion and patience. Rather also, in the way that we all get to learn to love and care for each other just a little bit harder. We get to invite others into our lives and be a part of a really cool community. We get to ask others for help.

As my friend and I shared in this conversation, we agreed; vulnerability and being genuine would be the antonym of the “fake it til ya make it” mantra. Being vulnerable means sharing myself because “I need and trust your help“. And so we share. We share our stories with others in hopes they help “even just one person” as Josh and I say. We share to encourage and inspire those in our community who may be still wearing those scratchy pants and need someone to give them permission to put those joggers back on (man, they sure are way more comfy).

So, go ahead friends, pull your hair back into that messy bun you haven’t washed with real shampoo in a week, get those stretchy pants ready and move on from that 80’s-style fashion of “fake it til ya make it”. We give you permission.

Call the Midwife-my love for “Reggie”

When I was pregnant with Charlotte Grace I happened to discover an amazing show, Call the Midwife. I would binge watch, feet propped, munching Sour Punch Straws all the live-long day. I think what drew me in was the beautiful way the writers seem to find those outliers in society-the ones who are marginalized, judged and often outcasted and give us glimpses into their lives to create such wonderful compassion for them. I also may have had a fascination of the birth stories since I had not experienced natiral birth with Aubrie and was so hopeful for a natural delivery with C.G. (which I was miraculously blessed to have…I swear everyone in the hospital looked at me like a unicorn for being allowed to have a VBAC).

I digress.

In season 6 episode 5 a new character is introducted; Reggie. Reggie has Down syndrome and I immediately was drawn to his character. He is loving and considerate and gentle. And he loves his mama. Who wouldn’t love him? His vibrant red hair and quaint framed glasses may have had my heart immediately anyway. In the 1950’s based story, Reggie’s mom passes and Reggie, likely in his 20s, is sent to live with his closest of kin, an uncle who is one of the supporting characters. Reggie goes to him for daily caretaking- food, clothing, housing. It was simply understood because in those days, many people with Down syndrome were unable to work . Not because they weren’t capable but because people often misunderstood them. They didn’t know how early intervention of speech and physical therapies can alter the projection of their lives. They didn’t see that their gentle-calmness didn’t mean “unable”. They didn’t yet know exclusion wasn’t the best option. Or, maybe, it was simply because of the worry of the stress work would have put on their, then, fragile bodies. I recall watching “Reggie” and his gentle way of speaking to others. I remember thinking how glad I was to live in an age where people with ability differences are given more than a diagnosis and a timeline for life. Though, unfortunately, that old way of thinking still does sometimes occur.

Of course, at the time I was so immersed in the show, I had no idea exactly just how glad I was for this generation’s understanding because we weren’t yet aware of Charlotte’s Down syndrome. We had no clue what life was about to bring us-the joy of this charished baby girl.


Today, people with Down syndrome have a lifespan of about 60 years (in 1950 it was just 12-15 years). In Charlotte’s life I look forward to that number increasing to match the rest of society.

Today, people with Down syndrome often live on their own, fully supporting themselves with paying jobs they are qualified for because they have training or certificates or college degrees thanks to people like Melissa Rodriquez Pantoja and Holly Rogers Hoffman at University of Houston who teach adults with disabilities. Also, an unimaginable number of community nonprofits spend their lives trying to work toward this goal with people who have all kinds of ability differences. Easter Seals, Home Place Of Texas, Reach Unlimited, Special Angels (to name a few)

Today, people with Down syndrome enjoy healthy relationships and even get married. They are grocers, baristas, actresses, crafters, chefs, business-owners. They are friends, sisters and husbands and wives.

Tomorrow, what else could be possible?

Please support Down Syndrome Awareness by supporting the non-profits that provide the resources and care to make these dreams possible.

Please make a donation today to support our girl. Donate to our team here!

Fearfully and Wonderfully Made

It’s Down Syndrome Awareness Month. For weeks I have spent hours trying to come up with the very best ways I can help others understand Down syndrome. I have considered what would be most impactful, what information and statistics would best fit our family and what Down syndrome means to us.

Charlotte Grace is almost nine months old. The day she was born was the most beautifully orchestrated event-one I never could have planned. Very rapidly, though, our girl’s health declined in the hospital and we had no understanding of how or why. Soon, what felt like a two-week eternity, we were informed Charlotte had Down syndrome. Testing and poking and bloodwork were the norm inside NICU- and I prepared myself for a lifetime of doctor’s visits. I knew this because I had a community of families and colleagues from nearly a decade of relationships who had shared with me their stories of those like our family. However, the many hours of medical care is one area of DS life I’m pretty sure most outside this community aren’t aware of.

Our girl has been lucky. Healthy heart. Healthy blood. Many babies born with Down syndrome have weakened immunity, hearts and are more prone to blood cancers. Many babies with Down syndrome and their families struggle with far more appointments and worry than we have thus far but one thing I’d bet we all have in common is that we all spend countless hours in waiting rooms, innumerable minutes coordinating visits to this doctor and that radiologist, this check for cardiology, urology, ENT, audiology, physical therapy, speech therapy, and, coming soon to the Lewises; water therapy. It can be overwhelming at times and very often lonely, simply because we’re too exhausted to give self-care or spend time with loved ones. But here’s why I share. Not for pity. Quite the opposite.

When I consider these things, it may seem like it’s all for a fix- to fix our girl, to repair a damaged body caused by some inexplainable segment of time that inevitably means a lifetime of searching for a “cure”. Why else would we push ourselves to the utmost limits of sanity putting our precious babies in these tough circumstances if not for the hopes of correcting a mistake?

My daughter is not a mistake. Neither is her body. Her body is not made the same as mine or yours but that doesn’t mean it’s wrong. It means her body needs understanding, not correction.

“…she is already made perfect in Him, I just don’t know exactly what that means yet.”

She is already fearfully and wonderfully made. She was created in His image. I am charged, as her mother, to help others understand her in whatever way that takes form. As I spend limitless time researching things like methylation and the intricacies of how synthetic vitamins impact her tiny body, I remind myself she is already made perfect in Him, I just don’t know exactly what that means yet. The world doesn’t know exactly what that means yet.


Down syndrome awareness is not about a cure. It’s about raising funds to provid resources to people who can help the world understand those who have Down syndrome.

“…she is a good and perfect gift and so very fearfully and wonderfully made.”

So today, as I sit in the lobby at Texas Children’s Hospital once again-waiting for Charlotte’s urinalysis and kidney reflux results, I remember that she is a good and perfect gift and so very fearfully and wonderfully made.

Please consider making a donation to our local Down Syndrome Association so the future of our world can know more about our precious Charlotte: The Lewis Pride Team

A Brave, Beautiful Sibling to a Girl with Down Syndrome, School Days

It’s a bitter-sweet day. Today is our Gal’s first day of first grade. Today she boldly started at a brand-new school, with brand-new teachers and brand-new friends. Today she is growing up just a little bit more.



I was fortunate to spend the past couple of years teaching at the private school where Aubrie attended.  We love that school.  It was filled with a love that is unmatched in our books. The teachers were intentional with their time, likely because they only taught two days a week and cherished each moment with their students…I know, because I was one of them. This schedule allowed me to spend the other three days teaching my own daughter at home and have precious time with her while she got an amazing education that fit her and our family. There are many choices for education out there: five-day-a-week programs, homeschool, university model…they all have their pros but, for us and our energized 6-year-old, having the structure of a class some days and the flexibility of home days the others was like finding a diamond amongst the stones. The leaders took a genuine interest in, not just the students, but the families that attended as well. When Charlotte was born, and Josh and I spent the two weeks in NICU, not a meal went by that we had to concern ourselves about.  Every meal was brought to either the hospital or our home by our sweet church or school family.

As we journeyed through the beginning stages of being a “special-needs” family, I slowly but surely started to realized what I knew from the beginning. What I knew was true, but didn’t want to believe, from the moment I was holding my fresh little Charlie in the rocker in NICU with the NG tube up her nose and settling into the idea that she indeed did have Down syndrome;  I would need to leave teaching to give Charlotte the very best of me for her.  Now, let me say, for all you new DS momma’s out there, this was a personal decision for our family. It took me months to make this decision…and unfortunately, kind of last minute because I simply didn’t want it to be true for us.  I loved teaching and I loved the way I still got to be with my Gal so much. To give that up meant giving her into the hands of (perfectly capable) strangers who were not our school family we had grown to love so much. For us, knowing I could be home to do therapy with our Lovie, bring her to any and every appointment that was helpful and ensure I am doing everything within my realm of ability to encourage maturity and health for her, meant letting my Gal grow up a little bit faster than I was prepared for.


The day I shared with Aubrie she wouldn’t be going back to her old school, she cried. A lot. She cried about the stuff you’d think she’d cry about. Missing friends, her teachers, even her adoring Principal. But what hurt the most was hearing her sob over the fact that Mommy wouldn’t be with her as much. Gut punch. Frog in throat. That was the moment I could see into the future a little. Looking into that crystal ball I knew so many decisions now had the potential to carry this weight for our sweet big girl. The weight that certain choices inevitably will be made for Charlotte.  And, if I’m honest, it kinda sucks having to make the good, hard choices in life that are going to be better overall but hurt someone else, even for a while.

It made me realize how intentional I have to be with my family now, more than ever.

It made me realize how intentional I have to be with my family now, more than ever.  It made me understand how quickly a spouse or a sibling of a child with ability differences can feel pushed aside through all the day to day tasks that happen simply because the needs of that person with special needs have just that…special needs. I made it my goal for the rest of the summer to ensure that Aubrie got her special time too.  To be mindful of her feelings, to generously share my time with her, to give her my undivided attention as best as I could, but forgive myself when I couldn’t.

Then, about a week ago, Aubrie found her joy again. She was excited to meet new friends. She was nervous to meet her new teacher but quickly learned how amazing she is. She was excited about not having to wear school uniforms anymore! She made a best friend almost instantly. Then, one evening before school started, in her young and precious, child-like wisdom she said to me, “Mommy, I’m glad you’ll get to be with Charlotte for her appointments. And I can’t wait to come home to spend time with you guys every day.”

Today was her first day of first grade. Today was a day full of promise and hope. Through these times and trials I get to be able to witness her stepping into the person I know she is maturing into; a wise leader.

And so I know it will be ok. I know that when I have to make those good hard choices Aubrie will grow up understanding and believing she is loved just as much as Charlotte. I know both my girls are loved by others, no matter where they are.  I know at the end of the day, I love them (both) more than I did the day before.





We Started a Blog About Our Daughter’s Down Syndrome- Why We Hesitated…

Almost seven months ago we began a journey. A lovely, hard journey. One that included a perfectly knitted-together baby girl who was gifted to us after a very long wait. A journey also filled with lows and fear and self-doubt. I can remember sitting in NICU. That’s practically all I did for fourteen days; sit, and worry, pray, and cry and pray some more. Time had escaped me. The world had escaped me. I was in this vortex of confusion and worry for our baby, yet I had joy. I remember feeling a twinge of emotional force. I felt propelled in a direction I had not expected and, if I’m honest, I resisted it. I didn’t want to recognize it for what it was. There were times I simply would have rather crawled into a hole far, far away from many people who loved me well because saying it aloud would give it purpose and giving it a name meant giving it life. Quite frankly, I was afraid of stepping into that life I knew was waiting for me, for us, on the other side of our joy-filled grief. But, as a propelling force can often do, it thrust me forward and I gave in. I am so thankful I had the courage to do so. We started this blog.

I hesitated, for quite some time actually. I kept telling myself “No. You don’t want to expose yourself or your family like that.” “What if people don’t (care to) understand?” “What if people think I’m making myself/our family out to be a martyr?” “What if they think our life is simply all one gigantic sad scene from a daytime drama?”

No. No. No, no, no. I simply needed to know I was doing it for the right reasons. These are not them:

To cast a spotlight on my child.

She is beautiful. She is uniquely made. She is a “masterpiece”. But so is our other daughter, Aubrie. Charlotte is our Lovie Dove. She is so precious to us but that doesn’t make her more or less important to us or more or less loved by us than anyone else in our family or even in our community. It just simply happens that her story is one that we want to share to give others hope.

To generate income.

Money has never been a driving force in this family. We know and trust we will always be provided for. As someone who has spent the past decade in education or ministry my goals are clear; to help others in whatever ways I am capable and called. And I am called. As much as I have fought it, as much as I have said, “Nope. Not happening.” here I am, my path being laid out before me. I follow those nudgings, even if I do it cautiously, I will always follow. Here I am. Send Me.

To draw attention to ourselves.

I hope this life never points back to myself (or our family) and instead always up. Yes, there are times of brokenness and selfishness in anyone’s life. We’re human. This is not one of those times. This is the antithesis of that. This is our family, The Lewis Pride, being selfless and vulnerable in ways that may make us feel uncomfortable and awkward sometimes. We may even make other people feel uncomfortable and awkward. We’re ok with that because sometimes we grow most when we’re uncomfortable. Our vulnerability takes strength, strength others may not have yet, so we will lend it to them. (Thank you, mentors and friends, Janet and Doug Newberry for sharing that truth with us.)


No. Instead, we want others to know there is a protected place. There is a place they can share those feelings so many feel without this unspoken desire to put on a happy face. We get it. We know that feeling of putting on a mask of happiness so others don’t feel uncomfortable with our confused joyful pain (maybe that was just me). In any event, these are the reasons we started this blog:

To know the struggles from a true perspective.

The beauty and struggles are simultaneously real. We have been gifted a precious baby girl, who is so full of joy, loves her people so well already, and happens to have Down syndrome. We want the world to know her beauty. We want the world to see her for who she is, not what she has. The emotions feel real, but for us, when we hault our preconceived ideas of what we think she deserves in this life and open our eyes to what is better than those ideas, we understand this way is actually better. (Yes, that is present tense. We need reminders every now and again. We give ourselves permission to fail once in a while.)

To know they are not alone.

Families journeying through something like a diagnosis for their unborn, newborn or child can feel isolated. There are several groups that offer support and resources. We want to be one more way others can know they are not alone in this. We’ve said from the start: our voice only matters if it helps even one person. Our voice matters because of our obedience to use it in the first place…even if it was hesitant.

So communities can mature.

We want every community to have access to the resources and tools they need to ensure they never have to make the choice to tell someone with an ability difference (aka “negative behavior”) or their family they are not welcome. Ever. Period. In a time when the worldview is embracing the disability community faster than the church is, maturity in this way is necessary more than ever. Our Lovie Dove is a treasure. She’s our treasure, but she’s a treasure to this world too. If your church community isn’t yet embracing and nourishing this part of the ministry of the very Man we follow, something is amiss. If you read that and you felt that twinge…that’s the feeling I had in NICU. We urge you to not dismiss it. You might hesitate but please ask for help. We’re here.

lioness beside on brown wood

At the end of the day, when I look at myself in the mirror, I can honestly say I am doing what I am made to do. It’s hard. It’s messy. And it is absolutely vulnerable.

Have courage dear friends.

PTSD …Our Current Four Letter Word.

You are so beautiful…to me. You are so beautiful….to me. Can’t you see? You’re everything I hoped for. Everything I need. You are so beautiful to me.

What you are hearing in your mind are the lyrics to a wonder-filled song written by Houstonian Billy Preston along with Dennis Wilson, of the Beach Boys, one night at a party (seriously, check it out for yourself). The version we all know, Joe Cocker’s version, seems bittersweet, mourning even. The original, though, was created with the most upbeat, inspirational and jaunty of sounds.


This song is Charlotte’s song.  I have sung this song to her every single day of her life. She has heard those words proclaiming her adoration since before we knew of her diagnosis.  I sang those syllables when I could barely open my eyes through the tears during the mourning of the life we imagined for her. I rock her to sleep singing it every night and she watches me, anticipating my next sounds……..And I sobbed every moment of it the night I took her back to the hosiptal for a seemingly simple “neurotypical” infant illness.

Several days ago, Charlotte spiked a fever.  She has such a calm demeanor typically that we had no reason to suspect anything was wrong.  So when the caregivers at our church shared she had cried the whole hour and wanted to come find me, I knew in my heart something was very wrong.  Afterward, at home, her fever was 102.1 and climbing. Being a Sunday, calling the pedicatrician was not an option. Tylenol, rest, fluids…  By 11pm, it reached 103 and she was breathing rapidly. And then I was scared, as any mom would be.  Nothing out of the ordinary. I felt as I should, genuine concern for my baby girl and completely unaware of the post-traumatic stress I would soon endure.

Charlotte and Ashley Markgraf

As I pulled into the parking lot of the Texas Children’s Hospital Emergency Room, things began to change in me. There was a tightness in my chest. “I’m just tired and want to get my girl home. We’ll get out of here and I’ll be fine.” Making mental checklists of what needs to happen tends to be my go-to in tough circumstances (at least until I get my head straight and remember to pray) SO…”Turn off the car ( feels like I can’t breathe), grab my purse, open door back hatch (deep breaths), take out stroller (still breathing), get diaper bag, don’t forget the formula that slid out (deeper breathes), Oh, don’t forget the baby (It’ll be ok)……” As I strolled up the under-construction entrance ramp that smelled of musty pine wood I began shaking. The conversation that transpired is hard to recall. Lots of “Please fill this out.”, “Are you giving her enough fluids?”, “How many wet diapers has she had today?”, “I don’t know.”, “I don’t know why I’m crying so much.”, “Can you hold her down?”, “I’m sorry I’m such a mess.” “………catheter…. She’ll probably cry a lot for this.”

But what I felt was major fear. Fear of what they may tell me. Fear of what they may not tell me. Fear of the emotionally disconnected staff and the stupid monitors and unwelcoming gloves. Weirdly, fear of the underlying presumptions they had of the kind of mom I am to my precious girl (probably an admittedly incorrect perception). And in between all the moments of fear I’d just hold her, singing through my tears, Joe Cocker’s version. I mourned this for her; this whole entire event and every single one that could follow simply because she is a beautiful baby who happens to have Down syndrome.  Who could possibly, but may not, have renal function issues.  Who might eventually, but probably won’t, develop Leukemia. She may have a heart defect, but we’re really just not sure yet… so off to the hospital we go with every “neurotypical” baby health issue just to be safe and expose ourselves to the very same environment that so stressed our family just a short six months ago. And we will, absolutely, willingly do so.

baby birth born care

We left several hours later, with a simple UTI diagnosis, antibiotic perscription, and a referral to follow up in two days. Totally “typical”…and the doctor never even questioned her renal function. My my mind was a swirled up mess. I had worked myself into an absolute panic and allowed our NICU experience to over take me in those moments.

PTSD was really real for me that night.  It reminded me of all the lies I’ve so intentionally protected myself, my family and, most importantly, Charlotte from for the past six months.  The lie that she’s different in a bad way.  The lie that says her body is broken.  The lie that breaks this mama’s heart to pieces to consider ever returning to place whose purpose is to give health, but unintentionally provides doubt, and anger and fear….all self-perceived.

But today, I’m choosing to believe my girl is completely healthy and perfectly made. Today I know, without a doubt in my heart, she has great purpose in this world. Today, I’m choosing to sing my girl’s song the Billy Preston way.

6 Lies I Told Myself About My Newborn’s Diagnosis

As mothers, we often carry so much guilt and lies about ourselves. There is absolutely nothing new there. It is as real as the air we breathe and yet just as easily dismissable.

We tried for so long to conceive our precious baby girl. I knew the truth about disabilities because of all my background in special education. I knew real statistics and what “typical and atypical” looked like. I knew accommodations and modifications and early intervention. But more than that I knew the love I could expect. I knew what a miracle looked like. I had personally comforted many mothers whom previously had experienced the very same thoughts and feelings. All of this came before Charlotte’s birth and yet I still found myself vulnerable to the trappings of these lies:

1. She’s was a mistake.

The Mayo Clinic defines Down Syndrome being “caused by a mistake in cell division.” ( Please know that the information on the Mayo Clinic’s site is 100% clinically true and in no way intended, I’m sure, to cause pain to anyone. However, in my hurting heart, as I sent information about the diagnosis to loved ones, all I read was the word “mistake”.

The truth: Your baby is not a mistake. Your baby is a beautiful creation. If I had to compare my odds (1 out of 700) I consider myself fortunate to have drawn my baby’s lucky numbers!

2. I did something wrong.

“Was I out in the heat too long?” “I knew I shouldn’t have eaten that lunch meat.” “I was too negative.” “I was so stressed out.” “Maybe if I had exercised more…” “Maybe if I hadn’t exercised as much…” I seriously beat myself up internally in the beginning over every single detail of my pregnancy. And I NEVER led anyone on to that, which probably caused some pretty serious high blood pressure issues (but that’s another blog for another day). If I had a dime for all the time, energy, and amount of stress I spent over blaming myself for my daughter’s diagnosis…well, as Josh says, “I’d be making money in a weird way.”

The truth: There is only one thing to do. Love that beautiful baby you have been blessed with! They are perfectly created. Seriously. Think about how deep that is. Per*fect*ly. created. Not moderately. Not, “Eh, he’s ok.” Perfect.

3. People pity her, or (almost) worse, me.

When we recieved the official confirmation that Charlotte Grace did, indeed, have Down Syndrome, the first thought that popped into my mind was, “How will they treat her?” “They” meaning everyone we knew and loved. Would they love her the same? Would they be there for her the way they are for the others? How will they react when she does ____? How will they react when she doesn’t ____? Will they see me differently now too? It was the most gut-wrenching of it all. I knew I would love her. I knew Josh and Aubrie would love her. But some foreign and strange part of me wasn’t convinced they would love her.

The truth: Yes. They do, definitely, love her. They don’t always have the right words. They don’t always know just how to react, or questions to ask, or even if today is a good day for them to ask them. But they definitely, definitely do love her (and us). And that is all that matters.

4. People are avoiding us.

After the emotional roller-coaster of the birth of baby “Charlie” there was a lull, a period after the announcement of her diagnosis that felt like a lack of communication by many family members and friends. We had chosen to send out an email (which we will share in a future post). In the email we said we understood if people didn’t quite know what to say and that it was ok. Though, I had an expectation (albeit, a silent one) that people would come out of the woodwork to show us support (and many, MANY did). However, I expected every man, woman, and child to be at our doorstep and crawling through our windows to take over midnight feedings and diaper changes, and bring in a massage therapist and a maid. But that did not happen. Crazy, right!?

The truth: It took me some time to understand, but I had not thought that others may have to go through the same grieving process that I did. We are so good at manufacturing an idea of the journey our lives should take that we often don’t realize we do it for other’s lives too. When the lives of those closest to us don’t turn out how we envision, we grieve for them and sometimes that looks like silence.

5. I need to stop working.

This one was particularly difficult for me. Upon the delivery of Charlie’s diagnosis, I knew in my heart 100% I needed to quit my job. As an elementary school teacher smack-dab in the middle of a school year, I also knew in my heart 100% I needed to to return to work ASAP. Luckily, I was very fortunate to work for a school with wonderful (read: amazing), caring (read: loving), and flexible (read: generous) administration. They worked with me so I could teach two days a week and could be home with my girly to do therapy the other days. This was an ENORMOUS help and a true blessing for our family. However, I never could quite shake the burden on my heart that I needed to be with my girl ALL.THE. TIME. I wanted to be with her more than I ever felt the need to be with my older daughter (How’s that for some mom guilt?). I always thought Aubrie came out of the gates running, if you know what I’m say’n. Charlotte just “needed me more”, right?

The truth: Give yourself grace to make a decission that will have pros and cons no matter what. If you chose to go to work, find a caregiver you can trust to implement the therapy techniques with your little one. If you chose to stay home, love that baby and the workplace will be totally fine without you. Let go of the guilt either way.

6. I can’t be joyful and grieve at the same time.

Ohhhhhhh…..This lie. This lie was the biggest of all. It was by far the hardest to overcome. I still struggle with it and probably will for a very long time. It’s such a complex range of emotion. In the first group outings with friends and their kids, we would talk about Charlotte and I would immediately start crying. The only way I could articulate my emotions was to say, “Please don’t misinterprete my tears. I am joyful and I love my baby girl.” But I would always be afraid people would think we felt burdened by her. I was scared that others would never understand that we had joy, we were just grieving the life we dreamed for Charlotte. The joy we have for her is insurmountable. She was a gift to us after years of praying and we treasure her deeply. There is absolutely nothing we would change about her and that includes her having Down syndrome. BUT. We had plans for her life. We planned for her to go to this school, and take these classes. We wanted her to complete Driver’s Ed this way and in this timing. We expected her to have typical dating experiences with the great big teenage years full of girl drama and utter disdain for her parental units. We thought she would grow up and move on to college…and a career…and the All-American Dream….That was our plan.

The truth: Charlotte is our girl. And that means that she gets to have her own life story. She gets to make choices and discover her identity. She gets to find her strength and talents and gifts. She gets to determine when to put her full trust into the One who says who she is (and she will). She gets to say when, and what, and if this school or that one. She will decide her path, her purpose, and her plan.

And that’s when I remember that this plan…His plan…is so much better than the one we could have ever dreamed for her.

Angel baby

Who we are.

A name gives identity. A name gives sound to the stagnant air and purpose with intentionality. This is true since the beginning of time. We spend countless hours determining the syllables to pair together that are just right for our children, our churches, our businesses…even our pets. Names are so obviously important, and yet once the name is given, we rarely consider its impact on the world.

In our family, we hold on to the promises of our namesake. We trust the truths of our identity knowing they were given to us with much deliberateness by those who knew us before we were born when we were just a sparkle in an eye. We are Josh-Generous Leader, Arielle- Lioness of God, Aubrie-Leads with Wisdom, and Charlotte- Mighty Warrior. Lewis- Lion-Like. We are a pride, not only in our name but because we move boldly, even when it’s scary. We might take our time, but ultimately we fight the battles, earn the scars, and get back up. When a whisper in our ear says, “You cannot withstand the storm.”, we repeatedly roar back, “We are the storm.”


Our precious baby girl, Charlotte Grace, is already living out her name, “Mighty Warrior”. Our sweet “Lovie Dove” was diagnosed with Down Syndrome at two weeks old. Our journey so far has not always been easy. Many days of doctors and therapy. Days of grief and misunderstanding, but always days of joy. We hope the pages that follow fill you with hope. We look forward to sharing our story and experiences.

God doesn’t give the hardest battles to His toughest soldiers, He creates the toughest soldiers through life’s hardest battles. – Unknown