Posts

the phases of dominic

 

So our Dominic…

1. Loves bath time. Like it’s the best time of every day for 13 months.

2. Hates bath time with a fiery passion for 3 weeks.

3. Goes back to loving bath time (present day).

It’s almost as if he doesn’t have the slightest memory of the past 3 weeks – screaming until his face was bright red, legs straddling the tub’s side in attempt to escape, soaking mama’s clothes as she gives up on another night of clean and gives in to the wailing child desperate to be released from the terror that is the bathtub.

I do not understand why he became traumatized by the bath time experience in the first place and why he decided it was truly an okay, safe place to be after all. But this type of thing has been a pattern for our dude – going through phases where he does one thing and then just stops as if he has no recollection of it ever happening.

Other examples include…

1. He used to do a head shake thing whenever he heard music… no longer.

2. He used to devour blueberries like he hadn’t eaten in days; now he throws them on the floor.

3. He used to used to drop his sippy on the floor after he was done with it, now he doesn’t (but this one we are happy about).

All of these became routine, expected behaviors that we’d grown accustomed to, and all of these same patterns have just stopped after so long.

Maybe this is normal. Maybe it’s a baby’s way of testing things out. Maybe he forgot how adorable it was when he shook his head to playing music. Maybe he was sick of being bathed each night. Maybe he is saving an interest or skill for later but needs the mental space to give attention to something new right now. BEATS ME.

But also, maybe, in his weird little phases of like and dislike, my son is teaching me to soak up every little moment.

Nothing is guaranteed. It’s not guaranteed that his fascination with cars will continue tomorrow. He may be onto something new. He may not make his cute fire truck sounds for weeks or months or ever again. Even his “uh-oh’s” that were present at least 20x a day for the past two weeks are beginning to fade.

They say, “enjoy the little things;” “enjoy your children when they are small because time passes all too quickly.” And just about as soon as I shrug off that cliche advice for the millionth time, Dominic decides he is done with that toy, that word, that food, and I am reminded that each moment with him is one to cherish. And I may never get some of them back.

Praise the Lord for the camera on my phone because documenting every little thing he does gives me the chance to relive it, to look back on moments I may not remember otherwise. And y’all know, nostalgic as I am, I do this on the regular.

He is ever changing, my sunshine boy. And without knowing it, without trying to, he is teaching me so much about the fleeting, fragile nature of this life on earth.

sometimes frowns // never “downs”

No Matt Man story time for this post. Simply two important bits of information for you all.

I know all of the pictures I share of my brother or William show smiles or sillies. Much of the time these pictures are representative of their overall positivity and joy-filled personalities.

Even though happiness seems to exude from their souls, individuals with Down syndrome are not always happy.

Believe me. They experience a very colorful palette of emotion, just as all of us do. Matt can be annoyed with others, especially when they interfere with his personal time, and he shares his frustration through loud moans and flavorful words. Matt can be fearful, causing him to cry or ask questions a million miles a second. Matt can be overstimulated and flap his arms, shriek, and hold his hands over his ears. Matt can be angry, which can lead him to hit his head and flop on the ground. He can be sad, stubborn, irritated – all the negative feelings. He likes to be alone more than he likes to be with people. He is very opposite my son and would be happy to stay home sitting around than going and doing.

He is very much his own person – more Matthew than Down syndrome. And most of the time, more ‘eh’ than happy.

But I think what can paint an incomplete picture that individuals with Down syndrome are always happy is their ability to let things go. They don’t hold grudges. They don’t give two farts what anyone thinks. They live for the moment they are in, and if that moment makes them happy, then that is all there is. Nothing else matters. It is a beautiful thing, really. So yes, their joy is unique. It is captivating and inviting and wonderful. But remember – next time you’re prone to view Down syndrome as a condition that makes people extra happy, it is not their permanent state. After all, we are more alike than different.

Another lil PSA for ya.

There are some things you shouldn’t do but probably do anyway:

  1. Swimming right after you eat.
  2. Leaving the toilet paper roll empty after using it up.
  3. Keeping the water running while you brush your teeth.
  4. Coughing without covering your mouth.
  5. Referring to someone with Down syndrome as having “Downs”

People say “Downs” a lot — “oh yeah, they have Downs,” “what a cute Downs baby!” “do you think he’s Downs?” I know most of these people don’t mean anything bad by it. It’s simpler. It’s shorter. It removes the seriousness associated with “syndrome.” I have close friends and co-workers, who know and love my brother, who use this shortened terminology often. And while I internally cringe, I usually don’t speak up. I mean, it could be worse.

But I think it’s time it is said; for all of our sakes. Because I know it bothers more than me, and it has for a while.

Way back when, Dr. John Langdon Down classified the genetic condition we now know to be Down syndrome. It was named after him, and you’ll notice there is no ‘s’ at the end of his last name. This is why referring to Trisomy 21 as Down’s syndrome is incorrect.

And because Down’s syndrome is incorrect, so is “Downs.”

But not only is this terminology incorrect, it is also offensive. Hear me out, because I know the word “offensive” elicits many an eye roll these days. Referring to someone as “Downs” or “having Downs” is denying that individual their identity as a person first. “Downs” is an adjective, and as many of us can recall from our days in school, an adjective describes. It tells you what a person or thing is – funny, sweet, hairy, purple, joyful, girl. A person with Down syndrome is not “Downs.” Down syndrome inherently, so long as we say “a person with…,” places the person in front of their diagnosis. Because of this, Down syndrome is a noun – something a person has, among many other qualities.

When you use the word “Downs,” not only are you first defining an individual by their disability, but you are also making light of a genetic condition.

Indeed, there is nothing remotely negative or morose about receiving a Trisomy 21 diagnosis; however, individuals gifted with Down syndrome deserve to be spoken of in the highest regard. And to honor them best, we need to use the full diagnosis assigned them and nothing less.

If you aren’t sold on my point yet, consider hearing someone call a person with Autism, ’tistic.’ You may have shuddered at the thought of hearing this in real life, because chances are (hopefully!), you have never heard anyone say this before and you certainly wouldn’t dream of saying it yourself. In the same way, shortening Down syndrome to its unfortunately commonplace and more casual descriptor, “Downs,” is not doing justice to the individuals who are on the receiving end.

Even if your intent is noble, and even though it requires an additional two syllables, please use the correct term in its entirety – Down syndrome.

When you know better, you do better. And now you know.

On behalf of people with Down syndrome and those who love them, thank you.

 

 

feet flops // loves cops

Learning fact: people with Down syndrome have hypotonia (low muscle tone). Because of this, they are often “floppier” and more flexible, and their feet have a way of slapping the ground when they walk. As a result, Matthew’s walk is quite distinctive, and even at age 20, he can pull both of his feet behind his head.

Story time: Throughout his teenage years, Matthew has been fixated on police officers. He owns a set of handcuffs and a nerf gun, and he isn’t afraid to use them. He corrects me every time I call a police officer a “cop,” because he finds it disrespectful. He owns a collection PD shirts from multiple states. He watches arrests, pull-overs, and tasing done by policemen and women on YouTube as a fun little hobby. And any time he sees an officer in public, he keeps checking on him/her over his shoulder – his way of studying their movements without being too obvious about it. But it’s always obvious. When it is suggested that we go greet said officer, Matthew smiles as he leans his head down, giggling nervously. Approaching the policeman, Matt gets a little silly – usually whispering to himself or continuing to laugh. But when we are standing before them, Matthew freezes up in silence and just stares, starstruck – allowing me or another adult to initiate the conversation. Police officers are generally very kind to Matt – willing to answer his questions, which are almost always about the taser they carry. Some have taken their taser out and shot it into the air, leaving Matt completely amazed. Others have just let him take a look at it. Matt usually follows this exchange with a “can I hold it?” or a “can I tase you?” And shortly thereafter, he’ll answer his own question:

“riiiiight,” eliciting nervous giggles from the policeman and any surrounding spectators. 

19060168_10213414863035347_4122481560057367289_n    35428356_1965220330189048_6678734893297434624_n

These are two different policemen on two separate occasions. It kills me every time.

Our grandpa is a retired police officer, and his son is a current policeman. They both live in Florida, an annual vacation spot for our family. On one of our trips, in the year Matt was especially fascinated by the cops, my grandpa and uncle set up an opportunity for Matt to really truly BE one of them. First, they dressed him in a police vest. Then, they showed him how to use a taser (but much to his dismay, he did not get to try it). He was then given the passenger seat in a police car, and he placed my sister and I in the backseat, which by the way, was not at all comfortable. We proceeded to make our way down the neighborhood streets of Port Charlotte, Florida, when our uncle decided to spice things up. In an entirely staged scenario (to everyone’s knowledge but Matt’s), he turned on the sirens and lights of the police car and followed my grandpa’s van. Matt was alllllll sorts of giddy. He began flapping his arms (a sweet characteristic that he used to portray as a little boy all the time but now is only displayed when he is especially excited about something) and laughing as we slowed to a stop behind my grandpa, and our uncle instructed officer Matt to give the driver a ticket. As much as he tried to be serious about his ticketing duty (and he really did try), he couldn’t seem to wipe the smile off his face. He walked up to our grandpa’s car as straight-faced and straight-standing as he could, and then it all went to shambles. He threw his head back in laughter, and we all joined in.

IMG_6078IMG_6073.jpeg

This was for certain the highlight of his trip, and I’m sure it would likely be ranked in his top ten life experiences as well.

If only we could look at our every day the way Matthew looks at riding shotgun in a police car.

Thanks to this quirky brother of mine, I have learned more about tasers and handcuffs than I ever wanted to. But I have also learned how to embrace the simplest interactions and life experiences with radiant JOY.

 

when God hits ‘save’

I remember within the first few months of dating my husband, he asked me about my dreams, my plans, the calls I believe God had placed on my life. I watched his eyes grow wide as I shared one of them – my heart for the nation of China – and I stated that I was moving there. Lucas had been on a mission trip to Guatemala, but we both knew this was not the same as China. China was a whole other world. It was literally on the other side of it. And the conviction that this was where I was going, and he could take it or leave it, was not only incredibly immature of me to suggest but left him overwhelmed, and honestly, a little terrified.

He must have really loved me, because it didn’t scare him enough to walk away. He was intrigued and wanted to see what it was about China that kept tugging on my heart. Over the next year, I shared as much of my heart as I could through pictures and videos and stories of my previous trip in 2012. I prayed that if this was the man God had for me, that He would call him there, too. And I watched as my husband’s heart slowly opened. Then, the summer after our engagement, we visited China together – headed to the same orphanage I had served at three years prior. I adjusted more quickly to the drastic time difference than I had my first time around, but Lucas did not. Jet lag hit him hard. It took him a little over a week to feel like himself, and even then, he wasn’t sure about this new place.

My heart was home. But Lucas didn’t understand how. “It’s fine,” he would say in response to my eager pursuit of his inevitable falling in love with the country. We argued. We prayed. We sought counsel from those wiser than ourselves. And I remember, on one of our last days, a few of the staff at this fantastic Christian foster home for orphans with special needs told us they wished we didn’t have to leave; asked us to come back soon. And much to my surprise, my then-fiance replied, “We will be back.”

In 2016, we got married. And summer of 2017, before we got pregnant with our son, we visited this special place in China once again. This time, we knew what to expect, we adjusted more quickly to the time and the food and the language, and we were so very excited to reunite with our friends and the children who stole our hearts. Now, it was we who were convinced that this was where we would move; that this is where God wanted us to bring His kingdom. We prayed and felt fairly certain that our big move would happen in Fall 2019.

Later that summer, we found out we were pregnant. This was what we were hoping for. But it did make what we had planned more challenging, as we had to consider a much smaller, more dependent life also making this transition with us. Still, we made plans. We had hard conversations with our bosses and our parents. We put off looking at houses and decided to stay in our little apartment. And then, we began to feel a tug to stop. To wait. And I was angry. This was 6 years in the making, 2 years in the plans! But now it was feeling less and less likely. Tension in China had risen. We wanted another baby. I needed my professional teaching certificate. And we knew it would be easier to pursue the adoption of our son from the states. I kept asking myself if all these roadblocks meant God wanted to see how much we trusted Him, or if they indicated that now was not the time. We wrestled with this for months. We talked about it daily, and each day, it seemed we had a different revelation – stay in the states, go to China – over and over. We called trusted friends and mentors for wisdom and guidance, hoping somebody would just make the decision for us.

Then in late September 2018, our family took a long walk, and it was as if all the pieces suddenly fit together, all the confusion cleared, and we knew. We were not moving to China next year.

To be honest, I hated this. This was not the answer I wanted. But it was the decision that gave us peace, and we’ve been told by many that when you feel peace – peace beyond understanding – that is how you know it’s God.

Most days, it is well with my soul. But there is still a pervasive sadness that exists, as I long for the country that I so weirdly adore and the children I would do anything to care for. Especially now, as I look at the months ahead and remember what they would have looked like – packing, buying plane tickets, raising support and prayer partners, saying goodbye, moving across the world.

I am mourning the loss of plans, dreams that had been set in my heart for not minutes nor months, but whole years. I miss China everyday, and I know that the desire to be there will always remain. The Lord placed it in my heart even before I stepped foot in its borders, and I truly believe that one day, we will be there. But that day is not today, and it’s not tomorrow. And adjusting to that reality has proved painfully difficult. 

I find myself becoming frustrated over how clear we believed we had heard God back in 2017 when he told us 2019 was the year to move. I mean, ask anyone, we were certain. It’s embarrassing, really. To get it wrong. To hear Him wrong.

But that is the walk we are on. God speaks, we listen. Or we try to. And we will mess up. We will hear wrong. But He is still faithful. He is still good.

Our God decided to hit “save” on His plans for our move to China. But we are hopeful that He will surface them when it is time. And when that time comes, we will be more prepared and excited than we could possibly plan for.

For now, we are excited to begin a new journey where we are planted. Yes, we are still living in the same town in the same state, but 1. we are in our first home!! and 2. we aren’t simply living here waiting to leave. We are ready to LIVE in this place – to really dig in to what God has for us here until he calls us elsewhere.

 

 

 

learning is hard // not a ‘retard’ (featured on the mighty)

SEE THIS POST AS PUBLISHED ON THE MIGHTY here!

If you are new here, my younger brother Matthew has Down syndrome. Next to Jesus, he’s been my whole world up until meeting my husband and having our son. Now I share my world with a few more hearts, but Matt remains my best friend. So much of my life can be traced back to him – my career path, my heart for adoption, the leadership roles I’ve taken on throughout high school and college, my Dr. Pepper experience, my often times overly passionate advocacy for the community of individuals with special needs.

He is a big deal. And the coolest part? He doesn’t know it.

He’s out there living his very best life, touching lives left and right, and ending his day with a big bowl of chocolate peanut butter ice cream, clad in his boxer briefs, and watching a 10-minute video on how to clean an outdoor pool.

His whole life, learning has been hard. Entirely possible – just different. He has always excelled with technology – typing his thoughts was more effective than writing them or speaking them. Nothing says leave me alone quite like a text that reads, “Do Not Call Me Right Now.” He is fully capable of reading books up to about a 3rd grade level, but he doesn’t love it and always requests that another read it for him. That all changed when his nephew came along, because he willingly reads to him. And it is the most heart-swelling, smile-inducing experience I have ever had the pleasure of witnessing. When it comes down to it, Matt can learn. He does learn. It just takes longer, and he has to work harder for it, which if we’re being honest, is not a lot of fun. He is extremely gifted in learning things he takes an interest in. And those things are often a bit strange. But no matter. It just proves my point – he CAN learn if he wants to. That does not mean he will learn at the same pace, or even to the same level. It also, unfortunately, does not mean he will be allotted the same opportunities to learn as many others.

Here’s the scoop. We are all wired the same way – with innate abilities to retain and apply our learning and natural curiosities and passions that fuel our desire to learn.

But our abilities and curiosities may not be the same.

In the case of myself, I have a gifted memory. I do not, however, have any interest in car mechanics. Combining a strong ability with a topic of zero interest is not a successful combination. Similarly, I do not test well, but I do enjoy learning about Disney. Combining a lacking ability with a topic of great interest would not be a successful combination. In either of these scenarios, I am set up to perform poorly. But I swear to you, I can learn! In my case, if Disney and memory were a pair, I would probably look quite intelligent.

The world doesn’t work this way, though. Especially not for my brother and his counterparts. Have him read aloud a book about skunks, and you may not get a whole lot from him. But have him tell you about skunks straight out of his memory, and hold onto your hats. He can hack the school’s iPad system, but he can’t tell you how he did it. He can write out every direction for a drive to our grandparents home in Florida, but he can’t drive.

Society is quick to say he is “disabled,” “handicapped,” *shudder* “retarded,” when reality is, we haven’t necessarily given him opportunities to showcase the learning he can do. In my case, I can escape the need to memorize how to change the oil in my car without anyone assuming I can’t do it, or calling me names when they find out I can’t. Matthew? He can’t get through a day at his job without someone assuming he needs help.

He is bright. Brighter than anyone would assume. Brighter than even I give him credit for sometimes.

 Maybe we need to redefine what is smart.

My brother doesn’t fit in the narrow schema of intelligence that is accepted in our society. But intelligence is far more than being able to solve 525 x 62 or properly introduce yourself to another. Why can’t we assume intelligence of someone who can recite all of a character’s lines in a movie or remember my birthday a year after I told him/her a single time? Why is it we allow a person’s diagnosis or appearance to make us, not wonder if, but entirely doubt that they are capable?

Maybe we need to cut away the sides of the box we have created for people so everyone can fit.

My intelligence may not look like your’s, or my brother’s, or my students’, but that doesn’t mean any one of us is less bright than the next. We just have to figure out where that intelligence will shine and give it the opportunity to do so.

Right now, I am watching a TV series that aired a few years ago on CBS – Scorpion. In this series, there is a team of geniuses with insanely high IQs who are asked to solve impossible problems. But, they can’t navigate a normal conversation to save their lives. Does this mean we can assume they lack intelligence because they can’t socialize appropriately? In this same show, they have a friend who contributes near nothing to the academic prowess of the team, but she interprets the world for them and helps them survive daily interactions. Does this mean we can assume she lacks intelligence because her IQ isn’t over 100?

Not everyone is gifted in every way. But everyone is gifted.

My brother can learn. It may not be what you know. It may be knowledge you would deem unimportant. It may not follow a traditional learning trajectory. But the fact remains – he can learn. Everyone can learn. And even though it is harder for him and harder for others still, he is not a “retard.” Nobody is.

When you use the r-word,

you are insinuating that an individual, whether someone with a disability or not, is unintelligent, foolish, and purposeless. Which, in turn, tells a person with a disability that they, too, are unintelligent, foolish, and purposeless. Because the word was historically used as a word to describe an individual with special needs and twisted from its original meaning to fit a cruel new context, it is forevermore associated with a person like my brother. No matter how a person looks or learns or behaves, the r-word is never a fitting term. It’s time we waved it goodbye.

IMG_4088FullSizeRender_7.jpeg                                                  Matt’s first and last day of school

no tears left to cry

I was told that after childbirth, your body changes. Like your actual DNA shifts to produce differences beyond the size and shape of your tummy. I think that’s really remarkable.

You literally will not be the same after having a baby.

One of the first things I noticed post-birth was my hair color had darkened. I have always been blonde as can be, never once colored my hair, but after D was born, it seemed my roots were growing brown. But that white-blonde stripe in my hair? That stayed the exact same. So rather than follow the path childbirth had set for my hair, which was headed toward that of Cruella De Vil, I decided to place the fate of my hair into the hands of blonde highlights and an excellent stylist.

Before childbirth, I also used to cry the average, healthy amount. A few months after D’s delivery, I began to think I had cried myself dry. Those first few months, I cried so so many tears, for no obvious reason, and then suddenly…cue Ariana Grande because I had no tears left to cry.

There were times I craved a good cry – I needed it – but try as I might, my body refused.

I teared up here and there. I fogged up during an episode of This Is Us. I shed happy tears when I heard my niece was born with Down syndrome and when our Unified basketball team played their first game. But I hadn’t sad sobbed – you know, like cried until my nose was stuffy, eyes were puffy – since late June. My body couldn’t do it. Instead, it seemed what I lacked in tears, I made up for in sweat. And I am not kidding…SO much sweat.

Then the other night happened. I cried, and I cried hard. For the first time in 8 months. It was one of those cries where you can’t stop, you can’t catch your breath, and you begin to spiral away from the cause of your tears into every other sad thought you’ve ever had – my China baby for whom my heart aches to be reunited, my best friend who has impending surgery and who I miss so dearly, the fact that most of my friends live in other states, the way I have to pull my pants up and over the remaining baby pouch that exists on my stomach, the fact that this blog was not nearly the success I envisioned, the reality that I wanted my brother right with me to give me a hug, the abortion laws that are breaking my heart, the gosh darn snow and clouds that will not leave, the shock of crying for the first time in months, the foolish feelings of crying over something so seemingly trivial when there are people who don’t have parents, or food, or homes, or Jesus, or anything, and why can’t that change?  – all of it rushed into my mind, and I couldn’t break free. Finally, when the sobs faded into sniffles and I was done, I breathed in some Raven (seriously, this stuff is straight magic) until my nose cleared up, and I felt better.

“Better” is an interesting word to me. I tend to assume “better” means good (“that’s much better,” “the better recipe”), and I think sometimes it does, depending on where the subject started from. But I wasn’t starting from a place of “okay.” I didn’t feel good. I wasn’t fine. Sadness still held the overwhelming victory. For me, in this case, “better” simply meant improved. Healthier.

My tears cleansed the ache and washed the dirt out of the wound – allowing all of it to spill out onto my pillow and my husband’s chest.

And when it was over, my soul rejoiced that 1) I am human and CAN indeed cry – alleluia! and 2) it is well – even when it sucks and it hurts and it doesn’t make sense.

The cause of my tears? A house. Lucas and I have been house hunting for almost a year. It began as casual, just getting a feel for homes in the area, as we were discerning God’s timing for a move to China. Then, once the Lord had suggested we stay put for a time, we began to look more aggressively. This started in late September. We have seen, I am sure, over 40 homes in our town, placed 4 different offers, and we are still kickin’ it in our little apartment. Last night, we were waiting to hear back about an offer we put in on a house we thought could be “the one.” It had everything we wanted, but it wasn’t grandiose in the slightest. Cosmetically, it was far from perfect, but we had an eye for what it could be. We were careful not to get our hopes up again, but it didn’t work – we wanted it so bad. The yard was huge, with a playground, and I could see our D having so much fun running around back there. The home was cozy but not cramped, and I longed for a home where D had more room to play than one side of our living room; where we could have a second child, as we legally cannot have 4 people living in our two-bedroom apartment.

At 10:00pm a few nights ago, we received news that our offer had been beat out. Again. The reality stung – with this market and our financial position, we may not be in a house for a while. A long while at that. We simply can’t afford a decent home in a competitive market where there are other buyers who can offer far more than we are able.

Anger reared its ugly head –

if these buyers can afford a more expensive home, then why don’t they do that? Leave these lesser homes to those of us for whom it’s the best we can do. And why can’t we afford a house? Our jobs don’t pay us enough; we made the wrong career choices. I should have gone back full-time. Teachers deserve to be paid more, gosh darnit. D deserves better. Why can’t we do better for him? If God wants us here, then why doesn’t He make it more obvious? I pulled an Anne Shirley and turned my nose up at God, giving Him the cold shoulder, as I wailed at the tease this whole journey has been.

And although the following morning I woke with a pit in my stomach reminding me of the hope that was dashed the night before, I felt okay.

Better. Climbing ever so slowly back up to a place of “good.”

I was thankful for the roof over our heads and that we have all that we need where we are right now. I was thankful for the fact that D doesn’t even care about the space he has in our apartment. He is just happy to be where we are. And Lord knows, after 8 months, I was ever so relieved and thankful for tears that eroded my sharp edges and surfaced my pain.

We can’t afford a house, but I can cry.

All isn’t good or fine. It is better, though. And the tears help.

 

 

when dr pepper changed my life

2011 was halfway through my senior year of high school. I had done my college visits, received my letters of acceptance, and had the daunting task of making a decision of which institution to attend for higher education. Hope College was my first choice. But of course, money was an unfortunate factor in making this decision. I submitted essay after essay in hopes of accumulating enough small scholarships to help me afford Hope. Senior year of high school, in AP English, I was not short on time spent writing. You can imagine my relief when I stumbled across a scholarship that was a video competition rather than an essay. The requirements were simple – submit a minute-long video about what you would like to pursue as a future career and how the scholarship would help you do that, AND mention Dr Pepper. Honest to goodness, Dr Pepper was (and still is) my favorite soda (and really the only soda I enjoy drinking), so I didn’t even have to exaggerate my appreciation for their company. It was such refreshing fun piecing together a short movie about my relationship with my brother and how that inspired my decision to pursue special education. When Dr Pepper called me to share that they loved my video and wanted to give me $2,500 in tuition, I was blown away. Like I actually enjoyed making this little tribute to my brother – you’re telling me I’m going to get money for it, too?

I remember the woman on the other side of call trying to interrupt me through my chorus of ‘thank you’s.’ “But. We loved your video so much that we would also love for you to compete in our football toss for the chance to win $100,000 in tuition!” …I kid you not, when I read about this scholarship opportunity, I kind of skimmed over the part about football. One, because football. And two, because I honestly did not think it would ever pertain to me. But here I was, on the phone trying to pretend like I knew what this football toss was all about (“I’m sure you’ve seen one of our throws during a game before?” 100% had not), all while trying to pick my jaw up off the floor. She ran through the specifics of the competition: all-expense paid trip to Dallas, Texas with a guest of my choice… time at the Cowboys Stadium… 30 seconds to throw as many footballs as I could… free entry to the Cotton Bowl game… and a whole slew of Dr Pepper goodies.

I watched videos of prior Dr Pepper tuition contestants, studying their approaches and the environment around them, while my dad built a replica of the giant Dr Pepper can. Just like I was training for any sport, I spent my evenings throwing footballs (borrowed from my high school’s football team) in my garage. Being December, some nights I threw in a winter coat and gloves, other nights I could get by with just a shirt. I practiced with and without distraction, through sore muscles in arms I hardly ever used for sport.

We had just entered the new year – January 2012 – and the nerves and pressure were piling high as we approached our departure to Texas. It seemed my whole school, town, family, and friends were counting on me. My ability to go to Hope College was riding on this. I couldn’t seem to rest in the peace of,” if it’s God plan for you, then it will happen.” I had my eyes on the prize, and I was only thinking of one thing: winning.

My dad and I flew down to Dallas where Dr Pepper was waiting for us at the airport to drive us to our hotel. Our hotel was beautiful and covered in all sorts of free Dr Pepper attire and items for us. We quickly learned that the competition itself would not be exactly as we had planned. Rather than doing a preliminary throw tomorrow (Saturday) and having the final throw live during the Cotton Bowl 3rd quarter (Sunday), everything would be recorded ahead of time, a commercial would be made using the footage of the final throw, and that commercial would be aired during the Cotton Bowl game on TV the next day. This new knowledge caused a simultaneous sigh of relief and pang of nervous needles throughout my body – the final throw wouldn’t be live in the midst of thousands of loud fans, but it would be tomorrow. Then, my dad and I met the others. I knew there would be 4 other competitors, but all of my thoughts leading up to the trip had me thinking I wouldn’t really get to meet them until it was time to throw. I mean, I didn’t want to. I figured it would only increase my anxiety knowing my opponents. And how awkward would it be having small talk with people you were hoping to literally crush in competition that same weekend. But here we all were, in a semi-uncomfortable bus ride to an 80’s themed VIP Cotton Bowl party (picture like Charlie and the Chocolate Factory-esque). Small talk was had; I didn’t love it. But when we arrived at the party, the five of us grouped together (being under 21) to explore the sights, sounds, and TASTES. Free arcade games and food, dancing, laughing, winning TVs and iPods and hats. We left the party that night feeling like friends, and the ride back to the hotel was much less uncomfortable.

Arriving back at the hotel, our guests went to bed, and the five of us were craving to know each other’s stories. We stayed up late into the night (all realizing we probably weren’t going to sleep much that night anyway) sharing our stories, our hearts, and our hopes.

Glorie wanted to be a missionary, sharing God’s love and planting orphanages in his birthplace of the Democratic Republic of Congo. Claire wanted to become an oral surgeon after experiencing a jetski accident that resulted in a serious head and jaw injury. Courtney wanted to work for the American government improving relations between China and America. And Marcus wanted to become a media journalist who broadcast positive news stories featuring ordinary people.

378963_3006024955123_1475071325_n.jpg

388284_3006030275256_1491181854_n.jpg

So. WOW. I felt entirely inadequate sitting around the lobby fireplace with these four inspiring, motivated individuals – chosen among thousands of video applicants. And suddenly,  I knew this whole opportunity was way more than just $100k. Every one of these friends deserved this scholarship, and I went to bed that night praying, “whatever is your will, God.”

I slept all of nothing that night, just as anticipated. And woke the next morning an absolute mess. I was in chills and sick to my stomach. I needed to shake this if I was ever going to be in the physical and emotional place to throw footballs. I attempted a run with my dad, but I couldn’t do more than a mile. I needed Holy intervention. My dad continued on his run, and I went back to the room where I had (what I now know to be) a panic attack. My hands locked up to the point where not a single finger could be moved. My breathing picked up. Tears started flowing. My feet went numb. Throwing up or passing out seemed like very plausible next steps. I tried to sit on my hands and pull back my fingers to relax their lock. Nothing was working. I knew I couldn’t throw a football with my wrists, so this was bad news. I considered backing out, calling in sick. I cried out to God, praying that he would give my body release and my mind peace. I prayed He would have His way. I just wanted to be able to move my body. Then I heard God say, “read.” So I picked up the only book I brought with me – the Bible. I clumsily flipped through the Psalms, praying and pleading as I read.

For the first time in my 18 years, I encountered the Living God through His Holy Spirit. My hands unfolded from their crippled form, my legs and feet regained their feeling, my heart and stomach chilled out, and I could breathe again. I was in His presence.

I continued to read as an act of worship for His amazing grace. I felt normal! Not fantastic, but just what one would expect to feel before a major competition – an average amount of nerves and a whole lot of sweat. Still today, I can vividly remember how I felt during this panic attack, and the shift I experienced when the Lord miraculously took me from being unable to move to being able to throw a football. I can only hope this story serves as a testament to His faithfulness.

Onward we ventured to the Dallas Cowboy’s Stadium. I followed my usual pre-race protocol by spending the bus ride listening to music – trying to calm my thoughts and rest in the presence of God that had been tangible since I broke down a few hours earlier. As we approached, my dad was all sorts of giddy to be granted special access to such a football cathedral. I was just looking forward to dinner when I knew my butterflies would have subsided. We had our photos taken all throughout the stadium. After I got used to the camera being all up in my face, I found a lot of relief in being able to distract myself from the impending competition with silly poses and exuberant photographers. When we received the cue that it was time to throw, the playfulness was replaced by palpable anxiety. Glorie, sensing this, gathered us together for a pep talk and a prayer. We prayed as we walked toward the looming cans in the distance, and though I was afraid, I knew what we had just experienced together in the last 24 hours would have been enough.381314_3006035835395_125049029_n.jpg 393865_3006034035350_1891015874_n.jpg

I barely scraped through the preliminary round of throws. But I did. It was Glorie and I in the finals. Both of us would walk away with either $23,000 or $100,000 and this knowledge felt deeply comforting. We prayed together and all remaining nerves were washed away entirely. The team wanted me to throw into the Dr Pepper Ten can because Dr Pepper Ten is for men. Irony + girl power, ya know. Video cameras on at every angle, we were counted down to begin. Right off the bat, I got into a rhythm. I felt confident, prepared, and completely in the zone. I remember not looking at the scoreboards until the final whistle blew to end the 30 seconds, and when it did, I was engulfed by cheerleaders and applause.

I had just won $100,000 in tuition.

I tried to wrap my head around what this meant. I mean this was A LOT of money. More than I would ever have again, I was sure. I knew exactly where I was headed and what I would do when I got there – Hope College, Special Education – this was really happening. For the commercial that would air during the Cotton Bowl game, they recorded me receiving my check (like one of those massive ones you see handed out on Ellen and actually wonder if you can take that bad boy to the bank – spoiler alert: you cannot) and thanking Dr Pepper. We had to run it a couple times because I couldn’t make it concise enough. An issue I’ve surely never had before. In the original takes, I had thanked Jesus, my friends, and my family, in addition to Dr Pepper. But that must have been too long because it wasn’t included. More photos were taken. The day concluded with a delicious dinner where the five of us were able to share our stories with the larger Dr Pepper team. I also slept very little that night, because WHAT ON THE EARTH.

382850_3006043715592_260793592_n.jpg 404667_3006047635690_1331397663_n.jpg

Interviews were next – TV, radio, newspaper. Then the Cotton Bowl pre-game party where Claire, Courtney, and Marcus all received the generous surprise of Dr Pepper tripling their $2,500 in tuition! And then, the Cotton Bowl game. Great seats = happy dad. Football was played. At the 3rd quarter, the commercial was aired, and I was called out onto the field with my check to be recognized. The rest of the evening I was some sorta celebrity. Unreal.

381609_3006060356008_511036136_n.jpg

I entered this whole experience with one person in mind – me. Selfish, with such limited perspective. I left with an equally happy and heavy heart – a deeper relationship with Christ, a really huge check, a dad who I got to share everything with, the most unbelievable experience of my life, and four new friends to whom I would have to say goodbye.

Fast forward a few months, I had accepted the offer to attend Hope College. I was getting back into the swing of normal high school living when Dr Pepper called to invite the five of us and a group of other contestants from various other bowl games to a photoshoot for Dr Pepper products and advertising. They spoiled us entirely, once again. It was absolutely wonderful reconnecting with my fellow Peppers and being introduced to several more. We roamed St Louis, got all gussied up, got our photos taken. Nothing quite like it.

483187_3529836090074_341719095_n.jpg480727_3529874691039_943259172_n.jpg483214_3529880411182_219034898_n.jpg

And when I began my freshman year at Hope College, my face was all over the United States. On Dr Pepper cans, bottles, and cases, on billboards, in ESPN magazine. It all came full circle. And oh my good gravy, God is so insanely faithful.

IMG_0432.jpgIMG_1632.jpegIMG_0515.jpg644436_4560446654694_459915288_n.jpg

There you have it, folks. My Dr Pepper story.  I am eternally grateful for everyone who helped me along the way, and for my brother for giving my future a purpose worth sharing.


 

 

 

 

 

ten items that revolutionized my year

I usually enter into the new year thinking about all the people, places, and experiences I was blessed with the year before, but rarely do I wrap up a year thinking back on the things it brought me. 2018 was different. I made some personal purchases that were revolutionary to my wellbeing, and I wanted to share. Here they are.

10. Watercolor paints –  this year introduced me to the glory of watercolors, as I began creating canvases to hang in D’s nursery. I have been accustomed to using acrylic and puffy paints for my artwork and had believed watercolors to be boring in comparison. I have been delightfully proven wrong. Watercolors are so simple, and they bring a whole new world of color to the table. Literally.

IMG_5354.jpeg

9. Netflix –  okay, so I have obviously been familiar with Netflix before 2018, but this was the year I really stepped up my binge-watching game. The last few months of my pregnancy, which were the first few months of 2018, I was glued to Netflix. Everything hurt, and I had no desire to do much of anything else. So I watched 8 of the 13 seasons of Grey’s Anatomy. They rocked my world. And when Dominic was a newborn and slept in my arms regularly, I finished the remaining seasons. Thank you 2018 for giving me a much deeper appreciation for instant television and fictional surgeons.

download.png

8. Aquatic center membership – I never in a million and one years would’ve thought I’d be able to swim, let alone enjoy it. But during pregnancy, next to Netflix, it was just about all my body could do. I taught myself how to do some strokes (courtesy of YouTube) and started off. Once I figured out how to get a breathing pattern down, I made it the whole length of the pool. But not back. That took some more time. The week before I delivered D, I was able to swim 100 yards without stopping. For those of you thinking that’s a long way – it’s not. Postpartum, I was SO ready to get back to running, I rid my pool days au revoir and didn’t look back. I ran. Got injured. Took some time off. Then winter 2018 hit, and I felt myself wanting to swim again. So I bought myself a pool membership and have found some real cardio satisfaction swimming back and forth in lanes parallel to those of small children and old men. Turns out, swimming, like all other things, is far easier when there is no baby holding onto your lungs and pushing on your bladder.

download.jpg

7. Stainless steel water bottle – this thing is my little buddy. Seriously. If there’s ever a picture of me taken, you can bet ur bottom dollar that my water bottle was set down just outside of the frame. The stainless steel has been a game changer – my water stays cold and it never tastes “off” like it would in my former plastic bottles. PRAISES BE.Screen Shot 2018-12-14 at 8.10.58 PM.png

6. Library card – having fun isn’t hard when you’ve got a library card! But I haven’t had one of these bad boys since I was in 6th grade. After graduating from college, where I could just check out books on my student ID card, I preferred purchasing books from Amazon over borrowing them. This was all good and well until I wanted upwards of 20 new reads (for myself and my classroom), and I just couldn’t justify spending that much money on books I’d likely read one time. So I strolled into our library and signed up for a library card. This took all of 3 minutes. And it was FREE. What a steal! Somewhere in my growing up, I forgot you could get any book you wanted for the sweet price of nothing. It’s been lovely to read fiction novels on the reg once again.

download.jpg

5. Wet brush – fun fact: I brush my hair a lot. I really don’t enjoy feeling like it’s messy or frizzy. But I also really don’t enjoy brushing my hair. Especially after a shower. Per a recommendation, I bought a Wet Brush, and my world was forever changed. I don’t know what kind of science this thing is, or why it took so long to figure out how to not have every woman wishing she could just shave her head whenever she picked up her hairbrush, but this creation is magical.

71UrrzyEPCL._SY679_.jpg

4. This blog – all of those thoughts I’ve got spinning around in my mind? I’ve taken to writing them down in a semi-coherent fashion. For your benefit and for my own. It’s a relaxing escape to write and a total treat to have purpose in doing so.IMG_0584.png3. Sound machine – when Dominic was born, we got him a sound machine to mimic the whooshing sound of the womb. For his first 2 weeks, if he was fussy and we couldn’t make out the reason why, we’d bring him right by the sound machine and he’d settle down. After we transitioned him from the bassinet in our room to his own room and crib at around 2 months, we moved the sound machine with him. As an astonishing result, I couldn’t sleep. So we bought a second one. I have always slept with a fan on for its accompanying white noise, but with our sound machine, I don’t also need to freeze to hear the same sound.  I love love love it, and I truly can’t sleep without it.

download.jpg

2. Young Living Essential Oils/Cleaning Products – the thing I never knew I needed. I have always been a very scent-oriented person. I don’t think that’s a thing, so I’m making it one. I have a knack for naming odors – both pleasant and unpleasant – and more than songs or photos, I connect smells to memories, people, and places. So an opportunity to enhance my wellness through using my nose? Sign me up! I have loved replacing toxic candles with oil diffusing and toxic cleaning products with a non-toxic, better smelling option. I have loved ingesting and rolling oils on for health benefit. And I have loved not worrying about any of it. Because worrying is what I do best. I feel healthier, and truth be told – cooler, with these products in my life.

Screen Shot 2018-12-14 at 8.17.58 PM.png

1. Bullet journal –  I saved the best for last. This journal has structured my day to day, given me a creative outlet, and held me accountable for areas of my life that need strengthening. I have logged workouts and gratitude. I have written packing lists, to-do lists, and wish lists. I have taken notes and prayed. I have painted and sketched. I have brainstormed and written. It has kind of my everything inside its pages. I love being able to make it whatever I want, and like my water bottle, bring it everywhere. It was a casual purchase I made about halfway through the year, and not a day has gone by where I don’t use it.

IMG_2027.jpeg

2018, you superstar, you. Thanks for the things.

 

 

 

 

 

 

attached by a red thread

October is Down syndrome awareness month, and November is Adoption Awareness month. If I’m passionate about two things, these are them: down syndrome & adoption. Check the majority of the accounts I follow on Instagram – they are accounts of those who have adopted a child with Down syndrome. A crazy notion for those who have never encountered the love and wonder of an individual with almond eyes. And for many who have, a crazy notion still. From a young age, this has been my heart. After my brother was born, I knew I wanted a child with Down syndrome, and when I realized that’s not something you get to choose for your bio kiddos, I knew I wanted to adopt.

There was never one definitive moment when I knew adoption was in my future. It was always in me. Threaded in my DNA. Three of my favorite movies as a child (and still today tbh) were “Anne of Green Gables,” “Annie,” and “The Little Princess.” Can you guess what they all have in common? Yes, orphans. Adoption. All the goodness. Of course, this was not my conscious decision to only enjoy movies where an orphan was the lead character. It just happened. But today, I can see how the theme of adoption has been a beautiful refrain in my life. God certainly called me to this from the very beginning. And has confirmed it time and time again. I have doubted many major life decisions – do I want to be a teacher? Do I want to live in Michigan? Do I want to pursue a Master’s Degree? – but never, not once, have I doubted this call to adopt.

Then, at age 18, I met him. My little prince. In a small village on the other side of the world. A 2-year-old boy with Down syndrome. He sat there, moaning to himself, eyes looking into the distance. No tears, no smiles, seemingly expressionless. I remember this moment like it was yesterday. He did nothing, said nothing, but I knew. He was mine. “Lord,” I urged, “please give him a smile.” Days passed, I snuggled him, tossed him in the air, read to him, tickled him, gave him a world of kisses. Zilch. “Lord, please. Bring him joy.” It was during my final days in his country – he was laying on his back and I looked him in the eyes, smiling bright, talking to him, rubbing his tummy. And there it was. His mouth did the most gentle curve upward and his eyes folded into slivers. “Jesus, thank you. thank you. thank you a million times over for your joy.” From that day on, my little prince was smiley. Giggly, even. Full of the joy of the Lord. And all too affectionate.

Our hearts were connected the day I laid eyes on him, as only the Lord can complete. Chinese tradition calls this connection “the red thread.” I have told select few that I loved him like he was mine. Like I imagined I would love my biological children someday. It felt intense, beautiful, nonsensical. And once I met D (my biological son, if you don’t know me) for the first time, I knew the love was the same. The kind of steal-your-breath, make-you-wonder-what-you-did-to-deserve-this, on-top-of-the-world love. Oy, it changes you.

So there’s my heart – an open book once again. In a few years (because laws) and counting, we are going to fight for our then-teenage-prince, so that we may actually, legally call him ours. We are believing for this, and we trust God’s faithfulness to meet each and every need along the way. As we wait and prepare, we will continue to pursue and pray for this special boy. Adoption is exciting, and truly a picture of the Gospel. That doesn’t make it easy. I have witnessed the great heartache that presents itself in the adoption journey. But I have seen the orphan. I have looked them in the eyes. I have held them in my arms. And when you have met them? When you know their names? You can’t walk away unchanged. There isn’t a mountain I wouldn’t move to bring them care, justice, education, safety, love, and a family to call their own. Fortunately, I am not alone! Our God is the Father of the fatherless (Psalm 68:5), and the mover of mountains.

When I share my heart and passion for orphan justice, people begin to defend why they never adopted, why they never could, why they are not interested. AND THAT IS OKAY. You’ve heard it here, folks: not everyone is called to adopt. James 1:27 tells us, “Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the word.” Everyone IS called to look after the orphan. And that means whatever it means for you -adoption, advocacy, prayer, financial support, foster care, sponsorship, emotional support, education – but it doesn’t mean nothing.

Happy Adoption Awareness Month to all those families who have adoption written in their stories already and to all those families yet to bring their baby home. One less is one less. Until there are no more.

arch flat // name Matt

HAPPY DOWN SYNDROME AWARENESS MONTH! Who doesn’t love October?! DS awareness is just one more reason for this month to be your favorite.

I am the sibling of an individual with Down syndrome, and the future adoptive mama of another. Friend to some, teacher to others, jiejie to others still. Down syndrome blesses me daily.

I was five years old when Matt was born. When you’re five, you don’t remember words like “Down syndrome.” They don’t matter. Even if someone had tried to explain the definition of “syndrome,” I probably would have had enough trouble counting its syllables, let alone understand what it meant.  I liked it this way, because for about 4 years, Matt was just my brother. Not a syndrome. Not a diagnosis. Just the cutest gosh darn peanut you ever did see. And he was my buddy, right from the start.

I mean

 

My brother was my first exposure to the stages of infancy and toddlerhood, and for a good chunk of my life, I thought sitting at 12 months and walking by 24 months was the way every baby did things. Matt has always taken some extra time to learn, and with hypotonia (low muscle tone), gross motor milestones came to him at a slower rate. But they came. And he learned. Because he is capable.

It’s funny. This brother of mine, who like so many others, was predicted to have a life of let downs, was doing all the things the doctors cautioned may never happen. In 1999, doctors were still delivering a very black & white prognosis of Down syndrome. Painting the picture that it is bleak. Disappointing.

Sorry docs of 1999, you are mistaken. This journey is in full technicolor.  Down syndrome is absolutely a gift from the God of heaven. Milestones ARE met. Challenges ARE conquered. And the differences, the list of statistics, the health complications, and the never-wills fade to the background when those almond eyes smile up at you.


Two blog posts ago, I wrote about the million and one titles for the series I would be beginning about my brother. Each story’s title will feature a physical, common-in-all-individuals-with-DS quality of my brother, as well as a more unique piece of his personality/interests.  The hope is that these stories will make you smile, make you laugh, bring you hope, and bring awareness to the most remarkable population on this earth. Perhaps at the end of this series, I will release the hopeful words of my children’s book.

With all that background shared, here is story #1.

Matt has always struggled with introductions. For years, if someone were to introduce themselves to Matt or ask for his name, he would respond completely inappropriately – with someone else’s name, a random comment, a loud scream or laugh, or an ignore and walk away. Making sense of this was futile. It was just him.

One year, we were trick-or-treating together (I went out with Matt up until my last year of high school, because it made us both happy, saved my parents from needing to go along, and gave us double the candy). When I was a sophomore in high school and Matt was ten, I pre-taught what polite trick-or-treating looked like. We rehearsed. I repeated the lines before we walked up to the each door so it would be fresh in his memory. I asked him what he should say when the door was answered and he would respond appropriately. But when the doorbell was rung once (or five times), everything changed. “Trick-or-treat” became “smell my feet,” “smell my butt,” or “smell my candy.” “Thank you” became “give me it.” And a simple hello to the unsuspecting little old lady became “hi grandma.” Other commentary included: “what a mess,” “I don’t want that,” “I’m a cow” (which was most definitely not his costume), and “ew, what is that smell?”

In the moment, I was doing my best to remain patient with my brother while also showing the neighbors our mutual appreciation for their handing out candy. I worried that these people wouldn’t understand my brother – thinking he was just some rude kid, that he didn’t deserve to be out taking candy. I worried that if they did know he had Down syndrome, they would fail to see any of its goodness.

Now – I laugh. His silliness. His candor. He was so overwhelmed with excitement in the moment, he literally had no filter. But with each palm to forehead ring of the doorbell, Matt grew one teeny step closer to appropriate interactions with strangers.

Today, his introductions are impeccable. When our whole family is present, an introduction goes as follows, “Hi, my name is Matt (last name). This is _______ (last name). He is my father. This is _______ (last name). She is my mother. We are from (city). This is Erin (last name). She has a son. His name is (name). She lives in (city, state) with Lucas.” And you better believe, any additional family members present are also introduced in full detail: sister, grandma, yes – even the dogs.

He doesn’t miss a beat. There are way too many waitstaff, police officers, and near perfect strangers who know more about our family than they ever expected receiving from a friendly greeting.

But there isn’t a single person who doesn’t smile big when he runs through his introductory spiel. And if they knew what his greetings used to look like, I bet they’d smile even bigger.

I’m so proud to call him brother and best friend.