Not Taking on a Lot - I Serve with Joy

"You're taking on a lot, having two of them," she said in that matter-of-fact, almost accusatory way school teachers sometimes have. 

One of the things I love most about my job as an occupational therapist in sub-acute rehab is the opportunity to build rapport and share life with my patients. 

In between exercises, Mary*, a retired high school math teacher, and I were chatting about the holidays. I had just shared about how my emotions ran high over Christmas as it was Bo's first with us. She had a lot of questions about our adoption of him and even more when she found that he is not the only child we have with Down syndrome. That's when she said it:

You're taking on a lot, having two of them.

The sentiment is not new to me. We heard it a lot when we were in process to bring Bo home, and at that time, I was pretty good at deflecting the skepticism, so sure was I in our mission. But that was a long time ago. I am out of practice. I mumbled something unconvincing and introduced the next set of exercises. 

I couldn't get it out of my mind and in the middle of the night when Bo woke me with his nightly thumping to stim himself back to sleep, I stayed awake. You're taking on a lot...You're taking on a lot...You're taking on a lot. It was a relentless refrain, one that seemed eerily familiar.

And then I realized.

Back when I heard the sentiment frequently, before we met our favorite orphan, I began to believe it was true. The seed was planted. This is going to be hard. I'm not sure we're up for this. We're taking on a lot.

After meeting him and realizing just how developmentally delayed he was, the idea grew. He is more like an infant than a three-year-old. We will need to do everything for him. We're taking on a lot.

Coming home and experiencing the sudden impact of three in diapers, all of which enjoying a strange urge to paint with poo, and it was no longer an idea. It was a fact. We have taken on a lot. 

Every doctor appointment that led to another specialist that led to another test, interspersed with the needs of our other seven kids, was a greater solidification of that fact. I began to believe it with every fiber of my being. We are in over our heads. It is so much. I'm not sure I can do this. We have taken on a lot. 

I wore it as a cloak. I wrapped myself in it and found comfort in the self pity it afforded and resigned myself to my fate. So when I was confronted with it in the subtle accusation of my patient, I had no answer. Deep down, I had been agreeing with her for the last ten months. 

My middle of the night realization made me see it for what it is. It's a lie. "We have taken on a lot," and every discouraging thought that goes along with it, is a lie. 

The truth is simple:

Now what I am commanding you today is not too difficult for you or beyond your reach. Deuteronomy 30:11 

I can do everything through Him who gives me strength. Philippians 4:13 

This is not too much. We did not take on some big burden by adopting Bo into this family or even having a family this size. The evidence I used to convince myself otherwise simply boils down to my own inflexibility, and lofty, and therefore unmet, expectations for myself and others. 

I'm ashamed of myself. I'm ashamed that I so quickly bought the lie and that I wallowed in it for so long. But with the recognition of truth comes a heart change. Too long I've been kicking against the goads. This is not who I want to be or how I want to view my world. 

I need a new mantra. I refuse to don the cloak of self pity anymore. Upon prayer and reflection, one thought kept repeating. 

I serve with joy.

That's what I want my response to be. That's the refrain I want to have coursing through my veins. More prayer than statement of faith, more plea than testimony at this point, I serve with joy is a perfect resolve for the new year. When people ask me how I do it, I want to honestly answer by year's end, I serve with joy. 

Of course, I've already had opportunity to try it out. The other night I left my sick husband and spent the night in the ER with an even sicker Bo who was having some signs of respiratory distress. After a dose of oral steroids, we were released and crept back into the house at 4:30 hoping to get at least a few hours of sleep. As I was putting Bo back in his bed, Eon sat up, looked at me, and proceeded to vomit all over himself and his blanket. I'm not sure I'd call it serving with joy exactly, but I did find myself laughing at the absurdity of the situation. 

Baby steps.

*Not her real name.

Two Worlds

It's the middle of December and I find myself on the ride that has no working brakes. Careening along from one festive event to the next harried shopping trip with no time to reflect in between. 

I do my best thinking while driving. While logistically it's a pain in the behind, I'm happy that we chose to move Bogdan's care to the much farther away Peyton Manning Children's Hospital if for no other reason than the chance to reflect during the drive. Earlier in the week was an appointment day to follow up on his recent ear surgery. Once we received a good report, my mind was able to wander peacefully on the drive home.

When did we allow ourselves to become so busy with things that don't really matter? Better question: At what point does a country become so affluent it convinces its citizens that wants are really needs? 

I thought about the things I need to do in the next few days. One of the things on my list is, "buy tape." I need to spend my time and gas going to a store to pick up some tape so that I can then take that tape and use it to wrap up gifts in paper, paper I already spent money on specifically so it can be ripped up and thrown away. 

Does anyone else see the lunacy in that? Or are we all so brainwashed by the norm that we fail to see the folly in our daily routine?

They made a mistake on the radio, this morning. They played this song twice within minutes of each other. 

Once was enough to punch me in the gut. Twice was my undoing. So again, I find myself caught between two worlds. 

There is the world I live in here, in the land of plenty and pretend, where tape and wrapping paper are needs and I must battle crowds and traffic, dip into my bank account to purchase them, and keep myself away from my family while doing so. 

And then there is the world that seems to be a universe apart from this one, but is actually so close I can almost touch it. 

The world in which children are alone. 

The world in which they have no mamas and no papas to keep them safe from the older kids in the institution who abuse them as they themselves were once abused. The world in which it is thought, no assumed, that children with cognitive disabilities cannot feel pain so they are slung around by one arm and thrown into their cribs, if they leave their cribs, at all. The world in which children can be so starved and so neglected they can weigh a measly ten pounds at nine-years-old.

The fact that I cannot reconcile these worlds may one day drive me mad. 

I choose to believe that the latter world is closer to the heart of Christmas than the former. The glimmering world of tinsel and bows, where tape is a need, seems far removed from the humble stable where my Savior was born. He cares about these orphans, too. 

But Jesus said, "Let the children come to me. Don't stop them! For the Kingdom of Heaven belongs to such as these." Matthew 19:14

So on my trip to buy the oh-so-necessary tape, I cry. I cry and I pray that He will draw near to them and keep them safe. I pray that He will open eyes and move hearts in this land of pretend and plenty; that others will see with His eyes and let the children come. And I pray that I will find a way to meld my worlds; that while my feet must stay in this one, my heart will stay soft and very much connected to the other, that has nothing whatsoever to do with tape and tinsel, but so much more to do with Christmas.

Absolutely and Bologna

My boy's surgery was a complete success which was an odd reason to find myself sobbing all the way home from the hospital, but there I was. He will hear and, more importantly, he will live, neither of which he would do were he left in his home country of Serbia. 

I'm not being dramatic. The ENT confirmed that the cholesteatoma had already eaten away two of the three major bones of his ear and started to damage the third, though it was saved. It was only a matter of time before it entered his brain and caused eventual death. 

I told someone recently how grateful I am that he's here and able to get this surgery. Predictably, she gushed, "God must have a great plan for his life to have brought you all the way to him to save his life!"

Absolutely...and bologna.

Absolutely because I firmly believe that God does indeed love Bogdan and has a plan for his life. I do believe that God sent us to him. But bologna, because there are thousands of other children whose lives are not saved, who remain orphans, and who die alone. 

Does that mean God does not have a plan for their lives? Does He not love them? Does He not care about them? Why doesn't He send someone to save them?

And this is why I found myself sobbing, partly in gratitude for the boy that has captured my heart, and partly in sorrow for the others that are left behind. 

I'll be honest with you. After pouring out my heart to the Lord, I don't think the orphan crisis is God's fault. I fully believe He loves and cares for and has a plan for each and every orphan out there. I think He does send us and we're too busy to listen or we think adoption is for the super spiritual or the called. We think we're not patient enough or wealthy enough or strong enough or just enough. So we do nothing. 

And I wonder, where is faith? None of us is enough. That is kind of the point of the gospel. On our own, we are nothing, we have nothing, and we can do so very little. But in Jesus, we are children of the living God. We have everything we need for life and godliness, and we can do all things through Christ who gives us strength.

I have to remind myself of this over and over again. I don't have to be enough. Clearly, I am not. I am ridiculously inadequate in every possible way. Thank God, that's okay.

He is enough.

You don't have to be called, either. I don't know where this idea comes from. In our large family, my kids hear me say all the time, "You see a need, you fill it. If you see something that needs doing, and you are able to, do it. If there is a pile of stuff at the bottom of the stairs waiting to go to the top, take the stuff with you when you go upstairs. If you are near the sink and a little person asks for a drink, fill his sippy cup. If you find an empty box in the pantry, throw it away." It's not a difficult concept, right? You see a need, you fill it. 

You don't have to be called to adopt. 

I can't find the idea anywhere in Scripture that meeting a need is something that only a select few are called to do. 

Instead I find this: 

For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me. Then these righteous ones will reply, "Lord, when did we ever see you hungry and feed you? Or thirsty and give you something to drink? Or a stranger and show you hospitality? Or a naked and give you clothing? When did we ever see you sick or in prison and visit you?" And the King will tell them, "I assure you, when you did it to one of the least of these my brothers and sisters, you were doing it to me!" Matthew 25:35-40

There is no question of need. Over one hundred thousand children available for adoption in the United States foster care system alone. Millions of children institutionalized internationally. Sixteen-year-old girls aging out of orphanages and immediately entering prostitution. Children dying of ridiculous things like benign ear tumors, for crying out loud. A Teenage boy standing up in front of a church begging for a family, for someone just to care enough to take him to football practice.

There is no mystery here. Adoption is not for the super spiritual or those that feel called or equipped or whatever. It's for those who see a need and are willing to fill it. It's rife with complexity, but can start with a simple acknowledgment, as it did for me:

There is a child that has no one. I am someone. He can have me.

I have always been a dreamer. I'm a visionary. I am not, however, one who follows through. I have started more projects than I can possibly begin to list for you, but I can count those finished on one hand. I don't know why international adoption is among those finished. I'm guessing the answer is grace. His strength, His endurance, His tenacity, His patience...certainly nothing whatsoever to do with me. It is with utter humility and gratitude that I reminisce. 

So big, giant, crocodile tears run down my face for this boy who was a stranger to me just a year ago, but now is my son. He is worth it. He is worth all the hoops that we jumped through, the paper chasing, the scrimping, the fundraising, the anxiety, the travel, etc. I would do it all again and then some. 

If you have ever considered adoption, I want you to know, to really understand, that your child is worth it, too. Your child, the one that has not yet stolen your heart simply because you have not yet laid eyes on him or her, waits for you, perhaps in a country in which you have never landed. He's worth it, you know. She's worth it. Take a leap.

I know that adoption is not a need every Christian will fill. We are not all going upstairs or near the sink or reaching in the pantry. I get it. Please do not tell me how you are not in a position to adopt or how unhealthy it would be for someone that you know to adopt, etc. 'Cause honestly? I waffle between Absolutely and Bologna on this one, too. Tell Jesus. He's the only One who can change circumstances and mend hearts, k? We are all responsible for the fatherless, though, and if adoption is not your thing, support those that are trying to fund an adoption, take a meal to those who have recently adopted, provide respite care, sponsor an orphan, get involved in a Big Brother/Sister type program, pray for orphans, etc. Most importantly, ask Jesus what He wants you to do and do that!

Easier

Sometimes, I don't realize how hard things are until they get easier. And sometimes, I don't recognize they've gotten easier until they just have and I realize I have time to breathe again. 

Such is the case with Bo. My last update on our lives with him was pretty raw and real and filled with angst. Since then, he's made some significant progress and our lives have gotten easier. 

He's learned to respond to the word no. He doesn't always obey, but a firm No is often enough to buy us some time to get to where he is and prevent him from inflicting whatever damage he had his mind set on at the time. That few seconds of borrowed time has brought a huge sigh of relief to our home. 

With the added visual cue of an outstretched hand, he responds to, "Come here." Not having to physically pick him up every time we want to change his location is such a gift. He will now willingly come to the dinner table or to get a diaper change and those things sound so small, but it's those little things that add up to making big changes in our world. 

So many other things are clicking with him, too. He's started eating with utensils which is HUGE! Not every meal or for the whole meal, but more often than not. He still makes every bit as big of mess as when he digs in with both hands, but we don't care. We have been working on this for months in therapy and always provide utensils for him at home. Every meal, we initiated a couple of bites with hand over hand and every meal, he chucked the spoon at his first opportunity. One day, he just didn't and ate two bowls of chili with his spoon while I stabilized the bowl and the rest of the family cheered like crazy. 

He started attending developmental preschool three afternoons a week which has been so good for him, too. I took him for his pre-surgery blood draw recently. After waiting for what seemed like an eternity, they finally called him back. There was a child-sized table with a coloring station set up and he immediately climbed into the chair. I cringed expecting him to take big handfuls of the crayons and start flinging them or sweep everything off the table with his arm as he is wont to do. But, he completely blew me away by grabbing the nearest crayon and scribbling on the picture. Amazing! (Two minutes later, when the lab tech distracted me with questions, he took big handfuls of crayons and flung them, but still...)

Speaking of surgery, tomorrow is a big day. Bo is having a tympanomastoidectomy (ear surgery) due to a cholesteatoma which was discovered when he had tubes placed in September. He will have an overnight stay at Peyton Manning's Children's Hospital which will be a new experience for us. Shawn will be staying all night with him which is the right choice given their bond, but a tough choice for this medical nerd and control freak to handle. 

It is always hard to hand your child off to an anesthesiologist. It's especially hard when the bond of trust between you is new and feels so tenuous and you know he will wake up frightened and in pain. He usually tolerates pain pretty well. He does not, however, tolerate oximeters, bandages, blood pressure cuffs, IVs, wrappings, and strappings of any kind and he will have all of those. He has been known to remove coban around an IV with his toes when a nurse turned around for five seconds, so prayers in this regard are greatly appreciated. This is one of those surgeries where the potential risks are the same as not having surgery, only much less so. We know it's the right thing to do, but it's still hard. 

So I guess the increase in function has made things easier in the day to day, but what we risk in the loving, that only gets harder as we have to let go a little bit. 

The Boots of Rememberance

He remembers. These boots that drew his attention to me, just one adult in a sea of many the first day we met, he remembers them. I wondered if he would when I zipped them on this morning. I haven't worn them since the early days of his time home and the Indiana weather is finally cooperating and acting the season.

I find it incredibly hard to believe that it was only nine and a half months ago that I was seeing this child for the very first time. It seems he has always been a part of us. There were a lot of us crowding into the foster family's humble home that day - Shawn and I, our translator, the social workers, their driver, plus some curious extended family members of the foster family. All of us were focused on this tiny little boy. 

All were vying for his attention. Instinctively, I slid to the floor. 

It was less than a minute before B came over and started touching my boots. He started patting them and tried to lick them a few times. "Ne! Ne!" He giggled. It wasn't long before he was hiding his toys under my legs and then pulling them apart to find them again. Then he belly laughed. Oh my heart! That boy can laugh! When he laughs, his eyes completely disappear. Cutest thing, ever! --blog post, First Visit, Jan. 30, 2013

At the time, I had no way of knowing how very important shoes were to this boy. He loves shoes. In fact, that was his very first word in ASL. His favorite way to decompress after preschool is to close the door to my closet and rearrange my shoes. Shawn often finds matchbox cars in his boots when he puts them on for work at night. His foster family showed us a picture of his third birthday cake. It was shaped like a shoe. We didn't understand it at the time. We do now.

This morning, I sat on the floor and called him over to show him my boots. He reached out and slowly patted them, then, without warning, he lunged for me and wrapped his arms around my neck and held me. For five minutes, my son who is rarely still, sat in my lap and held me close. 

I think he remembers. 

Dispelling Myths

I was reading a book to Eon that paraphrased the Lord's prayer for children. As I was reading, we were discussing the pictures and the text.

The drawing portrayed a little girl angrily yanking the stuffed bear from a little boy and ripping its paw in the process. The little boy was crying and the text read, "And forgive us when we do wrong things."

"Do you do wrong things, Eon?"

Shaking his head, "No. Bo!"

"Oh, Bo does wrong things. Does anyone else?"

"Um," signs and says, "Zak!" Pats my arm, signs and says, "And, Ben." Thinks for a minute, "Tali!"

"So, Bo, Zak, Ben, and Tali do wrong things. Is anyone else naughty at our house?"

He looks very thoughtful for a second and then brightens and announces, "KJ!"

"Eon, what about you? Are you ever naughty?"

Chuckles and responds, "Nooooo."

"What about Mick? Does she do wrong things?" 

He looks at me like I've lost my marbles and shakes his head, "No! Mick, BIG!" as he raises both arms high in the air.

He's right. His almost-seventeen-year-old sister is very tall. 

"How about Daddy?" 

"No! "Daddy, Big, too!" said incredulously and suspiciously, like he's just now realizing Mommy may not be playing with a full deck. 

I tried again. "Eon, are you sure you don't do anything wrong...ever?" 

Emphatically, he leaned in, did not make eye contact, and yelled, "NO! BO bad!" This time I caught a hint of a mischievous little smile.

I've been watching Eon do his own version of awareness this month of October. He's been busy dispelling popular myths about Down syndrome. 

Myth #1: People with Down syndrome are always so sweet!

As a four-year-old boy, Eon's favorite response to any question is, "poop." He uses it liberally and loudly. Myth dispelled. Nicely done, Eon.

Myth #2: People with Down syndrome are always so happy!

Eon has recruited his little brother, Bo, for this job. They are working to dispel this myth by holding public tantrums, as many and as loudly as possible. Last night, they managed to dispel this myth in their separate classrooms at church. Good work, boys.

Myth #3: People with Down syndrome are all so innocent!

Clearly, from the story above, Eon is conflicted about this one. So what I think he wants you to know is that people with Down syndrome named Bo are never innocent, and those named Eon are always innocent. Oh, and tall people are never guilty either, apparently. 

Sorry, buddy. That last one needs some work.

Different

I originally wrote this post in March for World Down Syndrome Day, but forgot to publish it. Oops! So, Happy Down Syndrome Awareness Month, instead!

The National Down Syndrome Congress has a campaign, "More Alike Than Different," basically showcasing that people with Down syndrome are just like regular folks.

When Eon was a baby, I hung my hopes on that promise. I needed to know that he was very close to "normal." I needed to tell other parents that one day he would do all the things that their kids would. I needed to look to his future with hope.

But, here's the thing: He is different.

I may alienate a whole lot of fellow advocates by saying that, but it's the truth.

He learns differently, expresses himself differently, approaches new situations differently, relates to others differently...he's just different.

Some things are harder for Eon than they are for a typical child. He struggles with fine motor tasks like unbuttoning his shirt or writing letters. He has to work at retaining words and how to speak them. 

While Eon is really healthy, some kids with Down syndrome have multiple health issues. 

But, here's the other thing: It doesn't matter.

Our love for him is not different. 

We truly don't feel differently about him than we do his siblings. We don't feel frustrated by his differences. We're not sorrowful about his challenges. We're not overwhelmed by his needs. 

Our expectations for his behavior are not different. Our delight in him is the same. Our pride in him may be slightly excessive, actually. 

The campaign is truthful and valid. People with Down syndrome are more alike than different. While Eon does have these differences, he is more like his siblings than he is different from them. 

In spite of his differences, he's just a regular kid...with some quirks.