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 believingalie that her frustration was about me being a “bad mom” and “bad teacher”. And she was believingalie 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
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.
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.
Oh, the future. What will it hold for the masses? Flying Cars? Will the Saints ever win another Superbowl? Low carb cookies that don’t skip out on taste like so many others? These are the questions that keep me up at night. Or, I suppose they used to. My worries have changed a lot since the Saints won that first Superbowl.
Ten years ago, I saw marriage in my future. I already had the ring, but had yet to pop the question. I saw us having a dog. I also saw two kids and a house. Everything came along in due time, in its own unique ways.
My worries then were that I could handle all of this that I was about to thrust myself into once I asked my then girlfriend to marry me. Would I be a good husband and Dad? Where will we live? Will there be new and exciting Oreo flavors? Well, we have a great house, but those new Oreo flavors… yeesh.
My worries changed after Charlotte’s diagnosis. I had a lot of fear, anxiety and sadness and I was mourning her entire life and what I wanted it to be. It was crushing, before I realized that none of that was ever up to me in the first place.
If you’ve read my other blog post about what it was like going through all of that, you got a taste of it. The late nights at the hospital can play with your brain, but I’ve had quite a bit of time to process things since then. Suffice to say, 2018 has been trying for our little family but we’re going to break out of it stronger than before.
At first, my thoughts of her future looked bleak. I believe one late night, or early morning at some point I just broke down crying and Arielle asked me what was wrong. I could only say “She’s going to have such a hard life.” I didn’t know any better.
It’s funny though, after plugging into a few Facebook feeds and websites, how quickly you can get a broad view of something. Just a quick flip through a website can show you what certain communities or groups can face on a daily basis. I saw groups of people supporting loved ones and could see the compassion in their hearts for everyone that was new to the fold. It seems like nobody meets a stranger in this community of Down syndrome. One day I came across a statistic that said 99% of all adults with Down syndrome are happy with their lives. Nobody SUFFERS from Down syndrome.
My focus has shifted away from just making sure that she’s “taken care of”. I don’t think that’s something we’ll have to worry about with her. We are responsible parents, we’re working on getting her set up financially for the future. She has a very loving big sister that will be a great caretaker should the need arise and will make good decisions if need be.
Josh ten years ago would want his kids to go on with their lives making sure they did something meaningful and productive, so why should the events of the past year change any of that? Aubrie has bounced around from wanting to be a teacher, to a veterinarian to a gastroenterologist and back again. It’s too early to ask Charlotte that question, all she wants right now is a good nap, a full tummy and some snuggles and playtime with the people she loves. Pretty sure we’ve got that covered for her.
I see great stories of people with Down Syndrome that give me hope for Charlotte in the future. A young lady in Louisiana who graduated from a college program and got a great job at her local police department. Multiple stories of small business owners who exclusively hire individuals who have some sort of disability and of course there’s the great story of John’s Crazy Socks. There are many others.
I’m not just concerned with her making a name for herself professionally in some way, what about her personal life? Josh ten years ago wanted his kids to have a relationship and get married, maybe have 2.5 kids, a labrador and their own suburban dwelling. Aubrie says she’s never getting married, and that she’s going to live with us forever. Of course, she’s only about to turn seven, we’ll see how she feels about that in ten years when she’s in the throes of teenagerdom.
No matter your thoughts on reality television, it was a great window for me to be able to see a few episodes of “Born This Way”. Watching these young adults deal with with the same kind of personal relationships that everyone else I know deals with. Friends that you may not necessarily want to be around, people messing with your relationships, or trying to date and get to know someone new. If it’s through school or church, or through groups like our local Down Syndrome association and their many programs, I’m sure she’ll have many of the same experiences and interactions that I did as a young kid or teenager that will give her memories to last a lifetime.
I have gone from being confused about Charlotte’s future to being hopeful, and I’ve shifted back to her doing something that is both meaningful and productive, but I’ve added another task for her. I want her to be an inspiration and bring hope to others, especially worried parents. This is not a diagnosis to fear, and I hope that Charlotte grows up to be like the people I have had the good fortune to meet that do have Down syndrome. I’ll always be proud of her. Your kid will be amazing, do amazing things and inspire everyone they meet.
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.
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
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.
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.
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.
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.
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.
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.
Having a new baby is an all-around emotional process. Throw in a two-week stay in the NICU no one expected with a life-changing diagnosis, and you include a whole array of emotions that aren’t usually included in the package.
Anger & Frustration
Charlotte came in kicking and screaming at 4lbs 13oz on a Saturday afternoon. I couldn’t have been happier. After delivery, I felt the same as I did after our older daughter was born; relief that everyone is safe, pride in my new child, joy for my growing family, and the love for this child that just came into my life.
This is when things started to be different. Soon came the constant stream of doctors telling us what was wrong with our baby, most notably her size. We knew, due to a recent ultrasound, she would be around 5lbs. That didn’t bother us or our OB at her office, but it sure seemed to bother a lot of people that worked at the hospital. Nurses told us the NICU would be notified, their on-duty neonatologist would come, and they “didn’t like small babies”.
“Of course, she’s small.”, I thought, “My wife and I both have a thin build, our other child was born just over 6lbs, and she’s ok. These people don’t know what they’re talking about.” But for the next several hours, it didn’t stop. They kept undressing Charlotte to take her vitals and constantly mention her dropping body temperature. The logic side of my brain kept saying, “Well, no kidding that’s because you keep stripping my child down to nothing in this cold hospital. OF COURSE, SHE’S COLD.”
They kept telling us she was lethargic and weak. “Well, yeah, she’s a baby. Stop judging my kid!” Hearing all of the same things over and over but not really providing any real solutions or helping us understand the longevity and seriousness of what seemed simple problems, was actually provoking. Doctors and nurses flooded into the room to tell us that Charlotte needed to go into the NICU to “rest, stay warm and play catch up a little bit on her weight.” It all seemed so extreme for those simple symptoms.
Then the big ones came. A neonatologist came in and said, ” I think she has Down Syndrome. You need to get her tested.” It was as casual as I just wrote it. It may as well have been my mechanic suggesting that I get my brake pads changed on my next visit. It was infuriating. To me, Charlotte was perfect. Looking back, I was being protective of my daughter. Which is healthy… to a point. But this was only the end of day two.
Fear & Uncertainty
I managed to calm down some the day after Charlotte got to the NICU. I saw the care that the nurses gave to her, and it was obviously their calling in life. However, there was still underlying uncertainty. I knew she was safe, and it was where she needed to be, but I was so uneasy. I was scared that there was something really wrong with her. “Will her body temperature ever regulate on its own?” “Maybe she has Leukemia.” “What’s going to happen between now and the time she leaves?” “Will she ever get to come home?”
A week after she’d been brought to the NICU our new neonatologist, who we LOVED, showed us the symptoms and physical traits she saw and suggested the bloodwork to check for Down Syndrome again. We agreed, reluctantly. While we waited the days for results one of us was at the hospital around the clock, even overnight. Whoever wasn’t there was with our older daughter, Aubrie. We were exhausted. One day, Arielle and I decided to get some lunch after we met with the doctor, and in all of this exhaustion, Arielle got overwhelmed. I stopped the car right there in the parking lot and we prayed together, asking for the results that we needed to have, and the strength to accept them.
Depression & Disappointment
The “pre-diagnosis” felt like being in a hazy grey cloud. I was depressed. We were tired (an understatement) and ready for our kid to be home. I didn’t want this for Charlotte. I didn’t want this for my kid’s life. I wanted the healthy baby, have a quick hospital stay and go home with pink balloons and flowers and a stuffed animal or two. I wanted her to do regular kid stuff. I was being selfish. Selfish for the life I wanted for her.
Then one day there was clarity. It was almost diagnosis day and we decided to go to the mall with Aubrie to spend some time with her. We grabbed some lunch at the food court. I took a quick look around and caught some people walking by. It was a dad with his two girls. The girls looked to be teenagers, one had Down Syndrome. Her hair was done, she had a Star Wars T-Shirt on, a cool pair of Vans and some crazy socks (I wouldn’t understand the significance of the socks until later.) All three of them had a smile on their face. They were happy. And it seemed that we could all be happy like that one day too. That family of strangers have no idea how much they helped me that day.
Relief, Hope, Pride & Joy
Josh with his girls in NICU
Charlotte was released from the hospital on a crisp Saturday in January. By then, my head had cleared up and I was hopeful for Charlotte’s future. I had come to accept that she probably had Down Syndrome. I understood this was going to be our normal now, and that was ok. The doctor gave us the news Charlotte did indeed have Down Syndrome just a couple of hours before we left the hospital, exactly two weeks from her birth. The diagnosis was almost a relief. We now knew the root cause of what had kept her there for so long. Now we knew how to help her.
Charlotte came home and had a string of follow-up appointments with her pediatrician, cardiologist, ophthalmologist, Ear, Nose and Throat, Physical and Speech therapy. Each one amazed at her overall health. She is true to the meaning of her name, “Mighty Warrior”. I couldn’t be more proud of this little fighter. She brings joy to everyone she meets and is getting quite the little personality. Her smile makes my heart skip a beat, I can’t wait to see her awesomeness.
If I can offer some hope; It’s alright for negative emotions to creep in. It’s life-changing. Just don’t stay in them. Make sure you, your spouse and family are a team. Be there to support one another, and make sure you are communicating.
Something like a Down Syndrome diagnosis should change everything, without changing anything.
The Lewis Pride 