inclusion through sport

The other day, I had a well-meaning but very discouraging conversation about Unified Sports that only solidified the importance of its mission: to create opportunities for disability awareness, acceptance, and inclusion in sport and in the greater community.

“So is that basketball team just for the special needs kids or do the regular students play too?”

Through clenched teeth, I responded: “In Unified basketball, the students who have disabilities play alongside the students who do not.”

“So the students that aren’t your kids*, they just kinda help your kids play the game?”

*I am a special education teacher, so “your kids” meant the students I get to teach.

“Actually, all students play equally — getting to pass and take shots. No player is in a coaching role. That’s why it’s called Unified, because it brings students of all abilities together to play sports. And our game was pretty competitive last night. All of the students’ talent and spirit would amaze you.”

Cringe-worthy, right? The choice of language and lack of awareness didn’t surprise me, but it did disappoint me greatly.

The mission of inclusion is to make the word ‘inclusion’ obsolete. The mission of inclusion is to no longer have to name something as inclusive, because the action is so accepted and normal, nobody thinks anything extraordinary of it. The mission of Unified Sports, at least in my opinion, is to run it out of business. One day, students with and without disabilities will play side by side on a school team and it won’t be reason to call a news crew for the inevitable inspiring, viral video that would follow.

Though it’s clear we have a ways to go in our plight for inclusive language and behavior, Unified Sports is changing people. It’s reframing the way society looks at ability, friendship, and competition. It’s bringing us leaps and bounds closer to our aim of making inclusion the new normal.

And here’s how Unified does it…

1. It’s for everyone.

Inclusion invites us to welcome and celebrate those who aren’t often given the same opportunities. In Unified Sports, all students are welcomed to play, regardless of ability or disability. There’s no discrimination against students who haven’t played the game before, for students who aren’t athletically gifted, for students who have sensory needs or difficulty following directions. Within the restrictions of a typical team’s size, any student is welcome. To make things consistent during competition, teams are required a certain number of athletes (students with a documented disability) and partners (students without) on the court/field at one time. But often, when you watch a game, it is hard to decipher which students are those who would typically be classified as having special needs. Everyone blends together — passing, shooting, cheering. It’s a team. The best kind. And when it comes to spectators, it’s for everyone just the same. You enjoy competition? You’re looking for inspiration? You want to watch your child or friend kick butt with new skills? You’ll find it. And win or lose, everyone walks away better than they came. Winning is just icing on the cake.

2. It’s legitimate athletics.

Unified Sports are competitive, or at least they have the option to be. Our students feel that they are competing, because they are. It’s not staged. It’s not over-hyped. It’s a team with games and practices, coaches who want to win, and parents who will do anything to watch. The only exception is that the students with disabilities aren’t sitting on the bench or serving as team manager; they are out there playing the game — being passed the ball, cheering on their teammates, taking shots, and sometimes, grumbling in defeat. This is the real deal for every student athlete out there playing the game. And everyone involved deserves nothing less. Many families of children with disabilities recognize their child isn’t keeping up with typical recreation sports, and they are often faced with the decision to let their child play by warming the bench or to remove their child from the sport altogether. One parent of an athlete shared with me that her son had “done unstructured sports-like things before, but this is his first real team experience. He has been ready for it.” Another parent said her daughter had “watched her older brother play for years,” and she was excited to try it too. Unified Sports is the answer to the problem for so many families — a real team at a reasonable level.

3. It’s important.

Inclusion is important. And not just for the person being included; for everyone. Unified Sports has demonstrated what happens when we don’t let diagnoses dictate capability and when we open up our children to all kinds of friendships. Our children are not innately wired to see differences as reasons to pull away. That mindset is taught. Our children want connection and friendship, and Unified Sports emphasizes relationships between team members no matter their differences. At the first day of our team’s soccer practice, a partner ran up to greet an athlete with a big hug and a “you’re playing too!? Yay!” It’s no big deal, and yet, it totally is. I heard from one parent that her children slept in their shin guards the night before the first practice and another parent shared that her child could not stop talking about the impending soccer practice the whole week before. Inclusion through Unified Sports is making a difference for everyone. It has given players a “thing” to own, to look forward to, and to be proud of. It has given students who often feel lonely familiar faces of teammates within the walls of his/her school. It has left parents in tears of gratitude to be able to watch their son/daughter play the sport they love. It really redeems a love of sport for a person.

It’s really exciting that Unified Sports is giving everyone a chance to do something they love and be recognized for it without it being seen as separate or “special.” It just is. And that’s what I hope inclusion becomes — expected rather than extraordinary. We are not there yet, but we are well on our way. Who would’ve thought sports could lead the inclusion revolution?

how my brother made me less accepting and why that’s a good thing

After reading that title, you’re probably very confused. In a world that is bent on acceptance, any motion away from that ideal may seem concerning. But I think we may be confusing the ideal of tolerance with the promise of love, and my brother has been teaching me that tolerance, though appearing conducive to all, can create major problems.

My younger brother has Down syndrome, and with his presence in my life, I do not accept many things I see others let breeze by them — people’s choice of language, flippant racist remarks, personal indulgences. People will argue compassion for the persecutor; people will profess that it isn’t a big deal.

Accept it and move on, they say.

My brother has taught me that when we “accept and move on,” when we tolerate what we know to be wrong, we are perpetuating the belief that those who are wronged most often are deserving of it. We are encouraging further marginalization of already vulnerable people groups.

My brother deserves the world, simply because his presence within it is so pure and wholesome, it makes everyone else better. Many people in our world do not agree. And this shows up in our laws, in our statements, in our abortion rates  and in our attitudes. We need to be less accepting — of this and of the actions that got us to this place.

My brother, through his presence in my life, has taught me three lessons regarding acceptance:

1. Some things and most people are worth fighting for, even if doing so gets in the way of another’s feelings, politics or prejudices.

Humans often don’t like criticism; we take offense easily. We want to be in control, call our own shots and do what makes us feel good. Here’s the thing — some people’s words and behaviors are inexcusable. What makes some people feel good and in control can put oneself or others in harm’s way, perpetuate another’s vulnerability or create dangerous assumptions.

My brother has shown me time and time again that he is worth fighting for. He is worth more than a shrug of the shoulders, an “it makes them happy,” or a “you don’t know what that person is going through” response to mockery or exploitation. Whatever the reason may be, the action is unacceptable. The narrative that exists for individuals with disabilities places them in an extremely vulnerable position, where they look incapable and are treated accordingly. Those who perpetuate this narrative are standing in the way of my fight, and their feelings, politics and prejudices are a small price to pay in the pursuit of justice for my brother and those like him.

2. There is a vital difference between acceptance and love.

My brother has taught me there is good and evil in the world. And it is his goodness which has enabled me to recognize the evil that exists around us. People have attacked my brother and people like him because they are seen as easy targets. Vulnerability is a beautiful thing, but when it is tainted by another’s perverse need for something, it is a scary place to dwell. And yet, many people cannot help dwelling there.

There are people who use and abuse individuals with disabilities all around our world. I met a woman in China who was raped relentlessly by those who were supposed to be her caretakers, all because she couldn’t run away or tell them to stop. I watched a man on Instagram exploiting children with Down syndrome for his own personal pleasure. I watched another woman’s disabled child being ridiculed and threatened on social media because of her child’s appearance. When these things happen, there are generally large groups of people who take up metaphorical arms to fight the injustice, to call out the wrong. Some people fight fire with fire, which is often ineffective. Others are fiercely instructive and gracious. And still others are calling out the justice fighters for not being loving enough.

Remember, love doesn’t grant permission for wrongdoing — acceptance does. And love is what we want. Love doesn’t excuse the r-word. Love doesn’t allow employers to pay individuals with disabilities less than minimum wage. Love doesn’t pretend it’s OK to handle students from a trauma background with no sense of trauma-informed practice. Love stands to fight against the wrong, the evil, the unjust; acceptance says it’s not ideal, but it’s OK. By being the most innately loving and good person I know, my brother has reminded me that love does not seek to appease people but to make them better, to call them higher.

3. Compassion without action is empty.

And sometimes the most compassionate thing one can do is graciously correct and call out. We can be gentle and kind, full of the best intentions, but until we take boots-on-the-ground action to right a wrong, our compassion falls short of its full potential. I will not sit idly by while injustice takes place for fear of stirring the pot, stepping on toes or hurting someone else’s feelings. Because chances are, someone’s feelings are going to be hurt regardless, and it darn sure isn’t going to be my brother’s. He’s been at the bottom of the totem pole for far too long already, and I do not accept that is where he belongs. Compassion is where it begins, but it is not where it ends. Compassion, when combined with passion, is where change is formed and where justice is found.

I’m grateful to my brother for teaching me the dangers of acceptance and the importance of love. May we all stand against what we know to be wrong and move toward justice for everyone.

advocacy is a privilege

I love advocacy. It is one of my strengths and one of my delights. It is important for me as a parent, as a teacher, as a sibling, and as a person with my own individual needs. We all need advocacy to some degree. We all need to stand up for ourselves, fight for what we need, what we deserve. Some people need advocacy more than others; some people cannot advocate for or by themselves, and for some people, both of these are true.

I stand back and watch as so many parents advocate for their beautiful children. I watch individuals with mental health struggles stand up for themselves. I teach my students how to be their own self-advocates. I see communities rallying around refugee families who need other people to be their voice. I am in it, surrounded by it, and in appreciation for it.

But I’d like to name a reality that exists: advocacy is a privilege. To advocate for oneself, or to be advocated for, is a privilege. I am surrounded by numerous accounts on Instagram who are family members to an individual with a disability, and I watch as they share, story after story, picture after picture, of their child, sibling, or friend. They make others aware — removing stigmas and presuppositions from the lenses of the world around them. They advocate in front of others — educators, medical professionals, therapists, society at large — in hopes that their child, sibling, or friend will receive the best care and the greatest opportunities, because these fierce family members know their loved ones deserve nothing less. I get it; I do it too.

I wonder, though, about the individuals who don’t have a champion. I wonder about the lost children, teenagers and adults who need someone to fight for them, to care about them, but are left with nothing. What about the “not as cute” kids? The adults? The children whose parents can’t access these opportunities? The kids who don’t have parents at all?

I saw on Facebook the other day, a post about a disability film challenge, and I grew disgruntled. Another opportunity for the same cute kids, the same proud parents, to be shown off to the world. And there is nothing inherently wrong with that. But what about the others? When will it be their turn? Immediately, I thought about some of the orphans whom I know and love in China. They would qualify, because, they too, have a disability. And yet, they aren’t considered. And not because they live in another country. It is because there is no parent, sibling, or friend signing them up, fighting for them — their health, their opportunities, their education, their intrinsic value. I worry we’ve forgotten about them, and I am saddened by the likelihood that many of these individuals will never inspire you, because you will never see their face, know their name, or hear their story. Each orphan is a life — a life who, like your loved one, could have hundreds of photos taken and posted, could have stories written about them, could prove doctors wrong, could change your heart — but they are not granted that privilege. There is nobody to take them to the best medical specialists or fight for them to have an education or sign them with a modeling agency.  There is nobody. Period. So I will be their somebody — encouraging you to see them even if the world never will.

Remember this next time you shout worth — advocacy is a privilege. Don’t take it for granted. And also remember, the stories you hear, and the faces you see, are beautiful, important, and worthy, but they are not the only ones. The majority are hidden — waiting, wishing, and wondering if their time to be advocated for will ever come. Maybe I romanticize the idea of the underdog too much, but I am a sucker for the least expected being given a chance, being given a win. And if you or your child has an advocate in their corner, your chance for that win is that much greater than those who do not.

changing my music diet

I’ve heard people tell me that after a certain amount of time removing gluten, sugar, or dairy from their diet, they no longer miss it. I am not that person. 😅 BUT I am that person who found the same thing to be true with music. 

Maybe it’s because I’m a woman who finally woke up to the very real objectification of female bodies, or maybe it’s because I am about to bring another female body into this world, but I’ve noticed far too much of mainstream music (and entertainment as a whole) is complicit in the degradation of women — perpetuating a toxic culture that accepts violence, sexualizes every aspect of a woman’s body, and glorifies pornography. 

I am no longer okay with this. I am no longer okay with ignoring the lyrics for the sake of the beat. I am no longer okay with glossing over what I am hearing because it’s “just a song.” I am no longer okay with solely blaming the men who honk or follow me on runs, rendering them pigs, when they likely listen to the very same music I do — music that asserts my body is something to be lusted after (no matter its shape or size). I am no longer okay with listening to artists (both male and female) and helping build their careers, when they are using their talents and platform to strip women of their dignity and make them nothing more than bodies to be had. I am no longer okay with the toxicity of the entertainment industry and the way we glorify other humans as gods because we see their faces on our screens. I am no longer okay with society’s acceptance and normalization of pornography and its growing push for the normalization of child exploitation and pedophilia. I mean, I never was okay with any of this, but I am no longer okay with ignoring that I have a role to play.

I’ve seen and researched the way all of these things feed into creating the warped mindsets that believe it is okay to harm others. It always starts with a mindset. And if I am one less person downloading an artist’s music or following them on Instagram, then they have one less person  in their corner covertly approving their work. Their power lessens. They no longer need to supply the demand.

So yes, I am over two months deep purging the music I was formerly okay listening to and cleansing my music library from the filth I allowed infiltrate my ears and my mind. No, this does not mean every song I listen to is now praise and worship music (although, I do find that those songs often enrich my spirit the most). I still listen to artists whose music is uplifting and light, or whose music is catchy without it being trashy. And I’m not going to turn off someone else’s playing of mainstream music or popular radio. But it does mean that the songs that regularly reference female bodies and explicitly glorify sexuality, and the artists who do the same, are no longer welcomed in my headphones. They will not get my support or approval anymore. And that freedom is so good.

We all know by now that what we consume dictates so much of what we think and how we act. Take a look at or a listen to what you’re consuming…did you notice things you missed before? Do you really agree with what you hear or are you pretending you didn’t hear it? I looked up the lyrics to Cardi B’s new song to figure out what WAP stood for, and I couldn’t even keep reading past the first verse. It is that repulsive, and it is #1 trending in music today. Interesting. Same with the new movie “Cuties” on Netflix. People are coming to its defense saying that the premise of the movie was to expose the dangers of exploiting and sexualizing children BY doing the very thing that it recognizes to be dangerous. Nope, sorry. I fail to see how degrading women and CHILDREN allows these same individuals to experience empowerment.

It is one thing to love and embrace your body. It is quite another for that same body to be at the center of nearly every song and movie — urging women to show it off and urging men to take advantage of it. Women are amazing, and our bodies do remarkable things. But we are SO much more than our bodies. Let’s not allow our media to reduce us to existing for another’s gratification.

I don’t expect you to all do make a change in what you watch or listen to. In fact, I lived literal YEARS with the belief that music was only music. If someone else would say “how can you listen to this?” I would say, “I don’t listen to the lyrics, I just like the beat.” I know now that what I let feed me, feeds who I am. I’m slowly waking up to how quick we are to accept things as normal. But we don’t have to! When you take a closer look or listen, you may find a lot more wrong than you ever did before. What is it for you — music, movies, porn, video games, etc — that is feeding you messages that indirectly, or explicitly, perpetuate the violence, rape, and objectification of others? I’d encourage you — give it up. 

You might crave it for a while, and then, you won’t miss it anymore. 

It’s brave and it’s bold and it’s definitely not trendy. But it is healthy and holy. And it will make a difference.

messes to vessels

Peter. If you’ve read any part of the New Testament, specifically the Four Gospels, you know this name. One of Jesus’ disciples, Peter was always the one doing or saying the wrong thing. He was the one I found myself forgetting the name of during a story to then finish reading it and thinking to myself, “please don’t be Peter, please don’t be Peter,” because I already knew it was Peter. It’s always Peter.

He tried, but he always fell short. He doubted. He questioned. He lied. He denied. He compared himself to others. Aloof and fearful, Peter set the bar pretty low for being a disciple.

Let me provide you with five examples:

1. Matthew 14:28-31 – “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.” “Come,” he said. Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!” Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Peter doubted. He lacked faith, and he began to sink. 

Peter, this is JESUS we are talking about. He is walking on the water toward you. You are walking on the water toward him. A little wind started up and you thought it would blow you over? Have a little faith!

I find myself doubting what I know to be true more times than I’d care to admit. I know that God keeps His promises to us. I know His word is truth. I know we can do all of Jesus’ works and even greater today. And yet. Sometimes I forget, and other times I don’t believe all of that enough to act on it. I start right along, and then I begin to doubt. I watch as my feet slip below the surface, and I call on Jesus to rescue me. And graciously, because our God is not one who shames, He gently reminds me to have faith.

2. Matthew 16:22-23 – Jesus predicts his death to his disciples, to which Peter replies: “Never, Lord! This shall never happen to you!” Jesus turned and said to Peter, “Get behind me, Satan! You are a stumbling block to me; you do not have in mind the concerns of God, but merely human concerns.”

Peter questioned. He questioned the authority of God and what He had set in motion. And then Jesus called him Satan. Ouch. 

Come on, Peter. Do you really think you are one to be denying the repute of something His father in Heaven spoke to Him? You are a human. You can’t know the ways of God. Though your words were intended to comfort your dear Jesus, they had you questioning the authority of the God who ordained all of this to happen.

The Bible is a big book. It’s got a lot of confusing stuff in there that I can never hope to understand. And when I am overwhelmed by things far beyond what I can comprehend, I am tempted to turn them into what I can make sense of. I have no authority to bend God’s word to suit my needs or desires. I have no right to question what He says. It seems that sometimes we can get so wrapped up in our own life that we forget who gave it to us in the first place.

3. Matthew 26:33-35 – Peter replied, “Even if all fall away on account of you, I never will.” “Truly I tell you,” Jesus answered, “this very night, before the rooster crows, you will disown me three times.” But Peter declared, “Even if I have to die with you, I will never disown you.” And all the other disciples said the same.

Peter lied (granted, he didn’t know this was a lie at the time), and he failed to trust that Jesus knew what he was talking about. 

Peter, Jesus literally just told you you were going to deny him. Jesus. Like the guy who is fully God and fully human; the guy you earlier declared to be the Messiah. I think you can trust what he says. If he says you’re going to deny him, you gotta know He’s right.

I think about this a lot. When push comes to shove, will I own my Jesus? If there’s a gun to my head, will I deny Him? Same as Peter, I like to think I would never.

4. Matthew 26:70-75 – “I don’t know what you’re talking about,” Peter said. Then he went out to the gateway, where another servant girl saw him and said to the people there, “This fellow was with Jesus of Nazareth.” He denied it again, with an oath: “I don’t know the man!” After a little while, those standing there went up to Peter and said, “Surely you are one of them; your accent gives you away.” Then he began to call down curses, and he swore to them, “I don’t know the man! Immediately a rooster crowed. Then Peter remembered the word Jesus had spoken: “Before the rooster crows, you will disown me three times.” And he went outside and wept bitterly.

Peter denied. Three times he proclaimed never having known Jesus. The Jesus who loved him, cared for him, walked with him, and would later die for him.

This always breaks my heart, Peter. You knew this was coming, and you still let your mortality interfere with your love for Jesus. The man you said you loved enough to die with, you denied you ever knew.

How often, though, do I also let my fleshly desires, even my own primal needs, come before my love for Jesus? OFTEN. I say I prioritize Him, and a lot of times, I really put in a good effort. But at the end of most days, I know I could have placed Him first in so many more ways. I’ve never denied Jesus in the face of death, but in the small daily things, I do. Those thoughts about that person I know I shouldn’t have, the time I know I shouldn’t spend watching that movie, the hours I waste away on my phone. All of it comes at a cost. A decision is made. Something is sacrificed. Often, that something is Jesus.

5. John 21:22 – When Jesus returns, in the book of John, Jesus asks Peter (3 times, ironically) if he loves him. Peter answered every time that he does. Then Jesus indicated the kind of death Peter would endure for His glory, ending with, “Follow me!” And Peter, in classic Peter form, looked over at John and asked Jesus, “Lord, what about him?” Jesus answered, “If I want him to remain alive until I return, what is that to you? You follow me!”

Peter compared. And he was called OUT by Jesus telling him that it doesn’t matter what happens to that guy over there. All that matters is that Peter follows Jesus – whom he loves and has decided to follow.

Keep your eyes on your own paper, Peter. What’s it to you if John doesn’t suffer a painful death? What’s it to you if he stumbles upon good fortune? It doesn’t have any bearing on you, because YOU follow ME.

I find myself with my eyes on the other guy’s paper all too often – checking out his answers, measuring my shortcomings against his. Jesus is gently prompting — quit looking at that person; fix your eyes on ME. Jesus is, after all, who I claim to follow, and if I get so caught up in looking at what everyone else is doing or where everyone else is going, I might miss out on what I have been called to do, or worse yet, who is calling me there.

When I see the finish time of a fellow runner in the same race; or the Instagram picture of a seemingly more successful writer, or teacher, or mother; or listen to a talented artist or musician; or see that massive house that little family owns right on the beach – I  slip into thinking, “hey God, what about that guy over there?” I begin to question why they have something that I don’t or why I have something that they don’t, and I am reminded of just how similar I am to Peter. And constant as ever, Jesus responds to me in my own trap of comparison the same as he did to Peter: “what is that to you? You follow me!”


Peter gets to walk alongside Jesus as His disciple, and he still can’t keep it together. Couldn’t Jesus have picked someone better – more righteous, more honest, less deserving of a face palm every few chapters? The more I think on this, the more I know Jesus chose Peter for multiple reasons (many being beyond our understanding); but one being, so we could relate to a guy all too similar to us and understand the amazing grace of our Father. In all of Peter’s screw ups, I see a human – flawed, yet forgiven. Not outside of the grace of God. Just like myself.

Looking at all of these interactions with Peter, it would be easy for anyone to write him off as the silly Bible character who denied Jesus three times.

Funny thing is, though, God has been known to take terrible messes and turn them into beautiful vessels for His glory.

At first glance, Peter is certainly not the type of guy one would choose to build a Church upon. But God. God sees more in us. He calls out the best in us. He called Peter “the rock” – the rock on which he would build His church. And build His church through Peter He did.

What I find especially beautiful about this is that Jesus declared this destiny over Peter before Peter denied Him (Matthew 16:18). Jesus knew, and He loved him anyway. When Peter messed up, he always ran back to Jesus in repentance. And Jesus – always – forgave him.

Like all redemptive stories, Peter went on the change this world for the glory of God, just as Jesus had prophesied.

In the book of Acts, we watch as the tragically foolish Peter is transformed into an entirely new man, something only the resurrection of Jesus could accomplish. Peter became a man on a mission – sharing the good news of Christ with everyone he encountered. He performed the same works as Jesus – healing the sick, raising the dead, receiving visions from God. Throughout Acts, miracles were commonplace, and people were coming to know the Lord left and right. Peter was bold and courageous in his faith, encouraging others to be the same and creating a noticeable shift from the earlier Peter who doubted and denied.

But that’s what the Lord does. He loves us. Sometimes that looks like Him calling us out; sometimes that looks like Him calling us up. And sometimes, most of the time, it looks like both. His love is a transformative love – it takes what we were and turns us into what He is.

Our Father in Heaven is not without mercy. He wants you. And fortunately, He has been known to use the biggest failures of humans to bring His kingdom to earth. When we are weak, He is strong. I’m thankful for Peter’s example that reminds us that there is hope in the midst of our mess.

His glory shines brightest in the holes of our humanity.







dear mom; from a sister (featured on the mighty)

Dear mom,

This is my brother. I have been his big sister for 20 years, and those 20 years have given me an extraordinary friendship I wouldn’t trade for all the 46-chromosomed brothers in the world. My brother is my best friend. He has taught me how to forgive quickly, love fiercely, laugh often, and never give up. And honestly, I’m not sure these cliches could be more effectively taught than through the life of an individual with Down syndrome. Matthew has struggled to accomplish what comes easily for most people, and that has allowed him to showcase his stubborn persistence. He is gentle and sympathetic, sensing when someone is “off” and healing them with a big hug. When he gets mad (and he does, because he experiences all emotions), he doesn’t hold a grudge. When he is happy, everyone will know it. And when he loves you, he is deeply affectionate and thoughtful. Life is meant to be lived joyfully, and no one captures this wisdom quite like my brother.

I know you may be concerned for your other children – will they think I care less about them? Will they bond with their sibling? How will I make time for them now?

I promise you this – your other children will grow up differently because of your new baby, but they will also grow up with a greater knowledge of how much you care for them.

They notice all the time you spend on the phone setting up appointments, reading books about Down syndrome, and taking baby to therapies. But they also notice how much you try to squeeze them in to every one of those things, letting them help and encouraging them to learn with you. And they notice that with every extra moment of time that remains in your day, you will seek them out to play or read or snuggle together.

Your other children notice because having a sibling with Down syndrome has given them a new perspective. They, like you, now see the world through eyes that don’t mind slowing down to appreciate the small things. They, like you, have grown in empathy and compassion. These other children of yours will learn how to demonstrate patience and determination by helping and watching when it takes their sibling longer to do something. They will learn responsibility by taking on more than their peers.

They will learn love simply by seeing the ways your family moves mountains for one another.

Your other children may struggle with the sacrifices required in this new role, but like you, they can handle it. They were made to hold this honor, and they will be more than fine. Simply by being given to your family, this sibling with Down syndrome has just given your other children’s lives greater purpose. The relationship they will build together will rock your world.

There’s no need to worry, dear mom. You and your children are so lucky.

With love, a blessed sibling

Processed with VSCO with g3 preset

This post was previously published on The Mighty: here!



a mother to two

The other week, I did a brave thing. I also got my wisdom teeth out on that same week, but that pales in comparison. As I was in prep for surgery, I was asked the typical small talk question, “do you have any kids?” To which I answered, “yes,” and was further asked how many. Now ordinarily, I answer with “one.” It’s easier. It is the truth most people see when they look at my family. It doesn’t raise further questions. Problem is, it feels very inauthentic. When I reply with an answer that only considers Dominic and does not honor my second child, who was really my first, I feel I am being dishonest with myself and unfair to my family.  Even though right now we serve these roles only spiritually, I want to do better to honor both my role as mother and his role as son – one who belongs. Even as we wait.

My therapist has given me permission to speak my truth, to be bold and unapologetic as I declare the reality that is both of my sons. In conversation with her, I stated that doing this felt opposite cultural norms. I wondered, is this acceptable? How would people react? Would they judge this thing they didn’t understand? But we decided together that, while it may be taboo right now for a mother to call a child her own when that child is not present in her arms or in her home, it needs to be done. Perhaps the taboo nature of such a claim is exactly why we need to – in an effort to create a sense of normalcy around different types of families that don’t fit within the traditional. Mothers who have miscarried, mothers who are adopting, mothers who gave birth to a stillborn infant. We, as society, need to validate her motherhood regardless of what it looks like. These mothers should be invited to count that child among their family and feel the freedom  that comes with such a statement.

So the other day, when I was asked the question “how many kids do you have?” I gulped down my fear and said, “two.” It felt a little funny, to be honest. I definitely have to break in the newness of this response. But man, it did my soul some good to finally answer in an authentic way; giving validation to my motherhood and honoring my prince’s presence as my spiritual, to be adopted, son. Declaring his belonging and sonship was another way we are stepping into the challenge that the next few years will bring as we wait for our boy. And I know some people will find it strange that we are choosing to do this, but such is often the first step of any real change in our world.

So, hi there. My name is Erin, and I am the mother to two beautiful boys. I am the mother to a “typical” child and a child with Down syndrome. I am the mother to a chatty toddler and a non-verbal pre-teen. I am the mother to two beautiful boys.

But even with such truth stated plainly for all to see, it is lonely over here. I don’t fit in. People fail to recognize me in the way that I see myself and my family. When I met my prince 7 years ago, the Lord so connected our hearts that I knew I would be his mother. At the time, I didn’t know my husband. I didn’t have any other kids. Heck, I had just graduated high school. But this connection was divine. This knowing was supernatural. And our relationship, though an ocean apart, grows stronger with each passing year only by God’s great grace. And today, I know the Lord sees my hurting, ever impatient heart; I know he counts me as this boy’s mama; I know He will honor this obedience as we walk forward in his adoption. In the meantime, I long to be accepted, to be asked about both of my boys, to be counted among the mothers who are also parents to a child with a disability and to feel their support. But, so far it seems challenging for people to accept this in-between space where I wait, where I have been waiting, and where I will continue to wait until my 30th birthday.

In my home, I have one child, but in my heart, I have two. And even though there is still a level of fearing the unknown, I am choosing to claim that as truth both now and forevermore.

IMG_3596I saw this little sign at the Hallmark store, and it spoke straight to my soul.

ocd in music & me

Nathan Feuerstein, better known as NF, recently came out with a new album titled “The Search.” Let me warn you – this album is straight fire. Each song is an outpouring of his soul. Heavy and raw. The kind of art that leaves you with goosebumps on your arms,  tears in your eyes, or both. His music proves you don’t need to swear to be a rapper, you don’t have to be perfect to be a follower of Jesus, and you don’t have to be neat and clean to have OCD. NF’s struggles are laid bare for all to see, and because of his transparency, I realized that he and I are not so different.

Here is a fraction of his words from the song “Leave Me Alone.”

Diagnosed with OCD, what does that mean? Well, gather ’round
That means I obsessively obsess on things I think about
That means I might take a normal thought and think it’s so profound
Ruminating, fill balloons up full of doubt
Do the same things, if I don’t, I’m overwhelmed
Thoughts are pacing, they go ’round and ’round and ’round
It’s so draining, let’s move onto something else, fine

I’ve said it before, and I’ll say it again – Obsessive Compulsive Disorder (OCD) is not an adjective; it is a noun. It’s not something you are; it is something you have. Having OCD is not the same as being hyper-organized, tidy, or clean. Color-coding your folders is not OCD. A meticulous kitchen counter or desk space is not OCD. Needing to have things your way is not OCD.

OCD looks different for each individual – no two obsessions or compulsions may be the same, and the intensity of the symptoms can vary from person to person or may be heightened during a particular season or situation in one’s life.  

The adjectives of neat, clean, organized, particular, anal, and the like, cannot be exchanged for Obsessive Compulsive Disorder. OCD is an anxiety disorder, a mental illness; it is not a scapegoat you can hide behind to get out of everyone thinking you just want things your way.  It isn’t a character trait or an every day preference. It is not something that can be “made happy” by coloring inside the lines.

I keep it together, but have a disorder
I go to my room and I sit in my corner
And talk to myself in a language that’s foreign
I think of a rhyme and I have to record it
But know if I don’t, I’ll wake up in the morning
And question my life again, always avoiding
I hate to be different, but hate to be normal, so I…

NF’s song “The Search” also gives mention to his diagnosis with OCD.

OCD tryna push my buttons
I said don’t touch it
Now y’all done it

The sales can rise
Doesn’t mean much though when your health declines
See we’ve all got somethin’ that we’ve trapped inside
That we try to suffocate you know hoping it dies
Try to hold it under water
But it always survives
Then it comes up out of nowhere like an evil surprise
Then it hovers over you to tell you millions of lies
You don’t relate to that, must not be as crazy I am

I am so glad NF is starting a conversation about a disorder that is so misrepresented in our society. When I open up to share that I have OCD, I almost always have to follow up with its definition so I am not misunderstood for simply being particular about things. Even still, some people respond with, “yeah, I get anxious too,” or “me too, I can’t stand when things are out of place!” *Insert face palm emoji here* We are missing the point, and we are missing an opportunity to dive into the complicated minds in our midst. Sure, there is a lot of unhealthy going on in there, but there is also a depth and beauty to a mind that repeats the same song over and over in hopes that it finally hears what it needs to. How else can one truly learn the all the words?

If you dig in deep enough to the mind of one with OCD, you’ll find fear. Fear whose roots lie in a longing for something they don’t have or don’t feel they have (safety, health, love, etc.). For me, it is a desperate need to be loved and appreciated that manifests itself in checking and rechecking (and rechecking) conversations, text messages, blog posts, lesson plans, diaper bags, to-do lists, movie times, etc. Nothing can be left out. Nothing can be forgotten. Everything must be just so. Or I’ve failed you. Thus, failing myself. And why do I lay this bare for all to see? Because maybe, just maybe, once you dig in deep enough to know all of that, you’ll step in to remind me I am loved. And maybe, just maybe, I will heal.


When it comes to my own diagnosis of OCD, I have been doing really well as a whole during this year. I am on a low dosage of my medication, and I am improving in noticing when I fall into the trap of obsessive thoughts and getting myself out before they turn into compulsive actions. I have strategies at my disposal, and I feel mostly confident in their success.

That being said, this is still a daily struggle for me. My mind is relentless. Once the (O)CD starts skipping, it doesn’t stop without a fight. In addition to my usual checks these days, various somatic sensations have been heightening some compulsive responses. The feeling of dust on my fingers is one my body cannot stand. Upon a recent trip to the Grand Canyon, my husband, dad, and I went for a hike. Beautiful, wonderful, all grand things. Once we returned to the car, I knew I couldn’t take my shoes off. They were caked in red dust. I quickly remembered the feeling of dirt on my hands from playing softball as a child. I was constantly licking my fingers because I couldn’t handle the way the dust felt. Something about wetting my fingers helped the icky sensation go away.  I knew that taking my shoes off at the Grand Canyon would elicit the same physical response and distasteful compulsion. So, ashamedly, I asked if my dad or husband could untie my shoes for me. They did, and we all laughed. But THIS, friends, is OCD. Had I chosen to untie my own shoes, I know I would immediately need to get the dust off of my fingers, and rather than using water like a sensible human, I would use my tongue. And then I would press my thumbs onto my shorts as if to “rub off” the feeling. I would continue to use my tongue and press my thumbs until the sensation on my left hand fingers matched that of the sensation on my right. And if they were uneven, I would need to start over. This same feeling can present itself after touching fleece material, though the compulsions don’t last near as long. I’m not sure that these somatic compulsions stem from any particular obsession in my mind. I think I just feel so unsettled by them, I must complete the compulsion until my mind reaches a peaceful equilibrium.

YIKES. Here’s the thing – I know that all sounds crazy. I know it is irrational. And yet.

This life on earth is so tough. I can’t know why I deal with this, just as much as I can’t know why you experienced that loss, or why the sky is blue. I just keep hoping and trusting in a Good Father who I know will restore all things to His perfect order someday soon. And while I wait for that day, I will strive to be who I was created to be, even if that includes my pals, O, C, and D. And I am thankful that NF, and others who get it, are here to walk the journey alongside me – infusing understanding, angsty lyrics, and hope into our paradoxically restless and tired minds.

Now, go listen to NF’s album. Whether or not you have OCD, you will feel understood. Or at least, you’ll understand me a little better 😉




before #theluckyfew (featured on the mighty)


Down syndrome. You more than likely know what that is, and if you couldn’t provide the medical definition, you probably have met someone who was born with it. You’ve probably seen the hashtags, #theluckyfew #nothingdownaboutit #morealikethandifferent. You might remember Becky from Glee. Maybe you have seen “Where Hope Grows.” Or noticed Sofia Sanchez in a Target commercial. Perhaps you’ve read “Expecting Adam” or “Bloom.” In any case, Down syndrome is making its mark in big ways. People are finally catching on to the fact that Down syndrome is a gift.

But while we celebrate the gift that it is today, we need not forget that it always was.

Down syndrome is not something new. Before we were dubbed The Lucky Few and praised publicly for our cute almond-eyed babies and our strides toward inclusion, there were those who came before – so many advocates, parents, siblings, and teachers who weren’t seen as lucky. But who did it anyway. They paved the way for the deserved acceptance of people of all abilities and the celebration of Trisomy 21 that we see all around us. This letter is to those who have parented someone with an extra chromosome long before it was trending on Instagram.

To the parents whose babies were given life 20, 30, 40 years ago –

When you first heard the words “Down syndrome,” you were alone. You were victim to an endless series of “nots,” “probably nots,” and “no ways;” the recipient of a doctors’ bleak prognosis that included the words “mental retardation.” You were digging through library shelves hunting for the book or two that listed the characteristics and outlined the potential of your son or daughter. You were crying – through the pages of the books as you realized what you were up against; as you looked into your child’s eyes and thought, “why me;” as the expectations you had for your child turned into what-ifs. You were stared at. You were shamed. You were asked how this could have happened. And you began to wonder that yourself.

There were no hashtags, no tv shows, no small businesses that celebrated the gift of Down syndrome you now know it to be better than anyone else. You blazed the trail for what you knew could be and what you hoped would be. You fought for your child when doctors, teachers, family, and friends offered unwarranted comments and unfair doubts. You answered both the curious and the outwardly offensive questions as best you could, all while demonstrating grace and compassion. You sought the best therapies and education for your baby when it was all hard to come by. You raised your family to advocate without relent, to love fiercely, to extend patience and understanding.

You were the shout in a sea of ignorance; the voice for the child who nobody cared to listen to.

But now, years later, we’re listening.

And your shouts are making echoes into all parts of the world.

You made organizations, businesses, adoptions, education, careers, and inclusion possible because you fought, you believed, you loved. While ignorance still exists and the roads new families walk are not without challenges, your efforts of choosing life and love are reflected in the way Down syndrome is embraced today. You set the precedent for all the lucky families who would follow after.

We see you, and we thank you.

they are worth celebrating (featured on the mighty)

See this post published on The Mighty: here!

To the parents waiting on results from genetic testing:

You are anxiously awaiting the results from genetic testing that will tell you whether or not your baby has Down syndrome. You didn’t necessarily want to do the testing; you knew it wouldn’t change the outcome of love and life for your baby. But you needed to know and no matter what, you will love your baby more than anything in the world. I believe you.

This is part one of your story — the waiting. It is also the part one of many others’ stories as they journey down the road to a possible diagnosis. One of these stories you may be familiar with. It belongs to former Olympian Shawn Johnson and her husband Andrew East. They are popular vloggers and eager to start a family after going through a miscarriage with their first pregnancy.

They waited, like you, on test results to tell them if their baby had Down syndrome and were open about their feelings.

Shawn and Andrew shared their raw feelings of helplessness and fear on their YouTube channel. And as you can see for yourself, there is absolutely a beauty to their vulnerability. Sharing the realities of pregnancy and the “complications” it can bring is empowering, and I applaud them for being authentic in their experience. They have a huge opportunity and platform to bring enlightenment to women’s health and pregnancy. Our world needs more of that.

Then there is part two of your story — the results.

For the East-Johnson family the results of their genetic testing came back negative for Down syndrome or any other “chromosomal anomaly,” as they repeatedly called it (leaving me to cringe every time.) In their video they celebrated that their “baby is healthy,” and shared the doctor’s email, “Congratulations, your genetic testing came back negative. Yay!”

Following this announcement, the “Today Show” picked up the story to air on their show and titled it, “Shawn Johnson Gives Uplifting Update After Pregnancy Complications.”

By no fault of their own, the East-Johnson’s family story and how it was broadcast to the masses has revealed that pervasive ignorance toward disability still exists in our world.

But here is where your story can differ.

Likely, you don’t have a large platform. You are probably not in the public eye. Your worries, your emotions, your questions are hitting you in just as real a way, but in the privacy of your own home in the arms of your own family. All of those worries, emotions and questions are valid. They are fair. They are normal. The unknown is a scary place to sit.

But once the unknown becomes known, I believe doctors have a responsibility to their patients that can influence how a parent handles an unexpected diagnosis. And I believe the rest of us can join in by supporting and affirming the expectant parents.

Doctors: when you suspect the possibility of the unexpected in an ultrasound, or when delivering results to parents, you need to do better. 

Many doctors do not present the possibility of a Down syndrome diagnosis with any positivity. For example, Andrew East said about the doctor, “she was somber, and she’s not optimistic. And so we’re like ‘oh no,’ this is a bad problem.’” Then there’s the doctor who emailed the negative results by saying, “Congratulations” in response to their baby not having Down syndrome. Doctors are often the first people parents interact with when it comes to their growing baby. They are the ones who instill hope or fear. They are the ones who can be helpful or hurtful. They are the ones who are supposed to provide information and resources. This doctor’s email was, quite frankly, disheartening and distasteful. I can’t wait for the day when a positive diagnosis of Down syndrome is delivered with positivity and encouragement. I hope your news, whether positive or negative for Down syndrome, is presented as good news, with many congratulations because you are having a baby!

Everyone else: when we respond to the news our loved ones share with us, we need to do better.

Uplifting news shouldn’t be centered on the absence of disability.

When the “Today Show” aired the clip of Shawn Johnson celebrating her baby does not have Down syndrome, I happened to be watching the video with my brother in the same room. As soon as they said the words, “Down syndrome,” I all too quickly paused the video and looked over to him to see if it had peaked his interest. I am thankful he didn’t take notice (at least not that I could see), because he didn’t deserve to hear the reality of other parents rejoicing in the fact that their child is not like him. But what if he had been listening? For the sake of the other, our words and our actions need not be so careless.

To be better on all sides of the situation, we must first recognize some very fundamental misconceptions about disability that I believe we can all work to change:

1. Disability is synonymous with unhealthy.

Shawn Johnson shared the following, “every parent out there prays and hopes; you hope for a healthy baby.” Yes, this is true. I cannot imagine any parents hoping and praying for medical complexities. However, this comment was stated not in regards to the medical complications their baby may have, but in conjunction with the possibility of Down syndrome. Children and adults with Down syndrome can be unhealthy, just like anyone else. And children and adults with Down syndrome can be healthy, just like anyone else. Down syndrome alone is not a predictor for a child’s health or quality of life. Down syndrome is a genetic condition, not a medical one, and I hope we don’t continue to get this wrong.

2. Down syndrome is outside of God’s design, and therefore, we should pray for a cure or negative diagnosis.

“Prayers answered,” is what the East-Johnson titled their video announcement. I do not believe God answered their prayer for their baby to be “healthy” and not have Down syndrome, because I don’t believe their baby had Down syndrome to begin with. Hear me out. From the get go, God created that baby. If he or she was to be born with Down syndrome, our humble prayers would not change anything in God’s greater design. Under that logic if a baby is born with Down syndrome, it means God did not answer prayers or didn’t find favor on those praying, another grossly problematic misconception. God doesn’t take away Down syndrome, because it is not something that needs to be taken away. You with me? This is simply my two cents and is perhaps an unpopular opinion, but I honest to goodness see nothing negative about a Down syndrome diagnosis in and of itself. Call me irrational. Maybe God’s best is, in fact, Down syndrome.

3. Down syndrome is not something to be celebrated.

I understand that whether a diagnosis is given prenatally or at birth, there are a lot of difficult emotions that come with it. I can’t say I’ve experienced it because my son was not born to me, and neither was my brother, but I know there is grief involved in the loss of the child you thought you’d receive. You are confronted with a lot of  overwhelming what if’s and why me’s. I get it. However, that does not mean a child given any diagnosis of disability does not deserve the same celebration as that given to an intellectually or developmentally typical child. Let’s honor each life placed in front of us, because each is a life worth celebrating. Dare I say, especially those who don’t receive those celebrations as often.

Parents waiting on results from genetic testing, know this: your child is worth grand celebrations simply because they are yours. Should the anticipated results come back positive for Down syndrome — feel what you must, but know that you have been blessed. Brush off the “I’m sorrys,” and bring out the trumpets. Babies with Down syndrome are worth celebrating!