Not a Pinterest Perfect Pandemic

I don’t know how to do this.

This being a pandemic. The whole staying home, working from home, schooling from home, parenting from home, living from home all the damn time. I see all the messages about enjoying your family, making the most of your time together. I see people post about epic family game times. I, on the other hand, have played games a grand total of twice with my children in two weeks, both times saw me curled up in the fetal position at the end of it with the kids arguing over who had to put the game away.

I am not cut out for this. According to the internet, I’m supposed to be enjoying my family, baking bread, trying new recipes, deep cleaning, reading quality literature, and streaming family movies. I have done none of that. I am not productive enough.

I’ve spent my time obsessively checking Facebook. Seriously. I’m either looking for the latest death count, scientific articles about COVID 19, smart political opinion pieces about how bad America is failing, or memes. I’m like a junkie looking for her next fix. My other very productive past times are Toon Blast on my phone and Tiger King on Netflix.

I have yet to figure out how to work from home and still have a balanced life. I can’t leave it like I could before. I used to have a 50-minute commute from the hospital which I never stopped complaining about. But now I see how helpful it was to allow me to switch gears between work and home. Without that delineation, I don’t know how to shut my brain off. I just feel constant guilt. Guilty when I’m working that I’m not helping with the kids or doing what they need, or if I am doing that, guilty that I’m not working enough.

I have this overwhelming feeling that I’m not doing any of it right.

Like there’s a right way to do a pandemic.

I cannot make this a Pinterest Perfect Pandemic. I won’t even try. I will not have the pictures of steaming bread loaves, or homemade science experiments. I’m not your girl for craft ideas or mask sewing marathons. Sweet pics of family bonding are going to be few and far between.

But I will make a living and guide my team to as much possible success from home to serve our patients and get them to rehab. I will accept each and every hug from my kid with Down syndrome and listen to him say, “Good news I have you, Mom.” I will use the hose to make it rain for my kid with autism who loves it more than anything. I will order the purple hair color for the bored sixteen-year-old, and thank my husband for refilling the hand soap in the bathrooms. I will remind my kids to wash their hands a thousand times, devour the frozen pizza with gusto, and answer my twelve-year-old’s hundredth virus question.

To be fair, I will also watch too much Netflix, rely on social media for most of my news consumption, play ridiculous amounts of Toon Blast, repost every meme that makes me snort (no matter how dark the humor), eat too many snacks, never exercise, cry often, and drink a lot of cocktails.

I will also likely gag at all the “be thankful” memes, roll my eyes at all the overtly spiritual posts, and cry at anything that reminds me of my medical friends on the front lines.

And that’s okay. Because you know what? As long as we’re social isolating, there is no right way to do a pandemic. And my way is just fine. So is your’s.

There is grace for that. 

Love In Between

We got a broken one, I whispered to the nothingness of the dark. After months of sleep deprivation, constant vigilance, and numbness, I was finally able to put into words the despair that overwhelmed my heart. It had been fifteen months since we brought home our unexpected child from Serbia. Fifteen months of more bruises, bite marks, and scratches than I’d sustained in the previous forty-three years. Fifteen months with a child who did not understand the word no in any language and with a throwing arm that rivaled Nolan Ryan’s. As I’ve written before, my expectations colored everything.

When we embarked on our journey, seven years ago this month, I expected to add a stereotypical child with Down syndrome…affectionate, funny, cute, and generally happy. In hindsight, if those were my expectations, I would’ve been better served with a puppy. I cringe now at my rose-colored arrogance and stupidity. I imagined a child who would seamlessly blend into our family. I anticipated that love would be enough.

It’s not.

It’s not enough, yet at the same time, it’s everything. It’s not enough to overcome the effects on the brain from early childhood trauma. It’s not enough to change autism into neuro-typical behavior. It’s not enough to heal significant cognitive disability.

But it’s everything for the perseverance and tenacity needed to cope with these things long term.

I recently read that “Americans are really good at acute compassion, but really bad at chronic empathy. We don’t want to be care workers. We want to be heroes.” It was like a window into my soul.

I’m really good at grand gestures and crisis management. I’m all in for the weddings, and the tragedies, and the newborns, and the funerals. It’s the in between living that I struggle with. My kids can tell you that I’m fantastic if you’re going to admit you’re an atheist, you’re pregnant at eighteen, or you’re gay. I am full on supportive and the mother you want to have for the big moments. But, if you expect to eat dinner every night, or have clean clothes to wear, or want to process every little part of your day…go ask your dad (he’s amazing at all of it.)

Chronic empathy, day-to-day love, enduring all the behaviors with compassion? The struggle is real. I am ridiculously selfish. The daily wears on me. I don’t want my life interrupted. Children are exhausting in general, but a perpetual toddler is a whole different level. This child is one consistent life interrupter. Our support system, our faith, even our geographical location have all been interrupted/changed due to him.

Warm-fuzzy-feeling love, the kind I’m good at, is great for the grand gestures. It’s needed to fall in love, to bond with your newborn, to go after the orphan, to take a leap. But in-between love, the kind that’s committed and tenacious, is what’s needed on the daily.

Seven years later, I would do it all again. He is absolutely my son. But I realize more than ever that what I whispered in the dark was wrong. I am the broken one. He deserved a mom who would show up for the mundane with a hell of a lot more grace than I have. He deserved a mom with less glitter and more grit, without expectations, ready for the long haul. He needed a better in-between mom. 

He deserves so much credit for how much he’s learned and how far he’s come. We both do. For every inch of growth he’s accomplished, he’s stretched me a mile. All the grasping, striving, and reaching for love in between is worth it. One day at a time, we can do this. There is grace for that.20181020_135613

 

Rising from the Rubble

It was September 13, 2001 when the truth began to tickle in the back of my mind. Two days after the worst terrorist attack on American soil, when we all still thought it was a rescue operation, not recovery, and we gathered for our first Sunday service after the tragedy.

I remember feeling overwhelmed, completely burdened for the thousands of people we hoped were still alive, yet trapped in the rubble. Heartbroken for the loved ones waiting for news. I had become a news junkie since the first tower was hit, absorbing every story, every first hand account, every detail, trying to understand, to make some sense out of the madness and fear.

In church that day, with all my big feelings, I was bereft to discover we were continuing on as normal, as if that were a thing any of us would ever experience again. There may have been a brief acknowledgment and prayer, but then it was singing and sermon as usual.

I was shocked to my core. How can it be that people were likely struggling for breath, being crushed by the concrete upon them, hoping for escape and we were…singing? I remember sobbing in the ladies room. I was never one to keep my thoughts to myself in the face of injustice. I honestly don’t remember what was said in attempts to placate me. I just know it was not enough.

We were continuing on because it was not personal. It was not our tragedy. We didn’t know any of the victims all the way in New York City. We were Midwestern folks, after all. It was a bummer what happened to them, but we need to carry on and focus on our neighbors, to keep doing the work of the gospel.

In that moment, I first understood the cost of maintaining the status quo, of pretending holy, of keeping our lives wrapped in a pretty bow, and it was a price I was unwilling to pay. It was years of similar experiences, doubts, and observations before I could voice out loud what I now know to be true.

For too many years, my life was a dichotomy of religion and relationship. On the one hand, my church taught me how to behave, that God’s word (from the American perspective) is unfailing, appearance is everything, and questioning is divisive. On the other hand, I always had a deep empathy for people. Their stories and pain moved me. The more I understood people, the more gray I saw. Very few actually fit in the box, although many could pretend better than me.

Years of religiosity has taught me that I will never be enough. My behavior and my attitude will never cut the mustard in American evangelicalism. Never has that been more clear than now, with the ostentatious marriage of the church and the republican party, and with her obscene loyalty to its current administration. 

I’ve spent the last few years sifting through the rubble of my faith, hoping to find something of value, of truth. I’ve “deconstructed” as is the common term. I’ve met so many who’ve experienced the same, but have chosen to walk away entirely. To be honest, I tried that on for size, but found faith kept pulling at me, unwilling to let me go. 

I still believe. Not in the religion from which I walked away, but in Jesus and in red letters in my Bible. I believe in the One who said, “I have not come to call respectable people, but outcasts.” (Matthew 9:13b GNT) He’s my guy because I know I’m not respectable by religion’s standards. I will never come close to Pinterest perfect. I’m team outcast all the way. 

I refuse to let behavior be my focus. I will no longer acknowledge impossible standards. People are what matter to me. Who they are and what they’ve experienced. Life is messy. I joke that it’s my role to make other people feel better about their own lives…which is usually accomplished if they just watch mine for more than a minute. 

It’s my goal to be authentic in all things, even things that don’t follow the script. No. Especially those things. I’m learning that even in the rubble, there is grace for that. 

cross

Future Fear

snapchat-1951346079Every morning as we’re waiting for his bus, my son Bo (with ASD/Down syndrome, and a trauma background) and I scroll through Snapchat filters together. He loves them and still can’t figure out why he can’t make them go away by patting his head. I love that he snuggles in close to me in the quiet of the morning. 

We laugh together and it’s usually a great way to start the day.

But there’s one filter that makes me uneasy. The filter that turns my sweet baby’s face into a grown man’s. It starts me off on a jackrabbit trail of anxiety and “what wills”.

What will happen when he’s actually big enough to look like this. When the puberty that is rapidly approaching passes and we are left with a grown-up man with the behavior of a toddler? How will we keep him from hurting anyone? How will we keep him from hurting us?Snapchat-265284912

One of his favorite things right now is wrapping his arms around me for a giant hug and then pushing me hard away from him a split second later. It’s a struggle now to keep my balance. What will happen when he’s stronger?

He’s ten-years-old currently, but looks closer to a five or six-year old which means he’s still cute. Strangers often smile at him, and when he acts out, are usually willing to give him a pass. What will happen when he’s not cute? When his endearing smile is not enough to keep him out of trouble?

We are already past the age that he’s portable, meaning easy to take with us places he doesn’t necessarily want to go. The days of wagons, strollers, and cart-riding are behind us and we are already feeling “stuck” at times. We’ve adjusted our lives so much with a “divide and conquer” approach of separate vehicles and “who’s going to stay home with Bo” conversations. We already assign a 1:1 to him when we go out. What will happen if 1:1 isn’t enough?

Frankly, I’m exhausted, frazzled, and a little sad, now. What will happen when it’s harder?

I’m reminded of the idiom about borrowing trouble. And I don’t want to do that. But, I DO want to prepare. So for now, we work really hard to curb the behaviors that are sure to only get more challenging with age. And, we try to offer him a safe place to land where he can decompress after a stressful experience. We adjust his meds for good sleep and see a psychiatric RN regularly. We’re working really hard on effective potty training for increased consistency.Snapchat-190439023

I recognize that if I’d been given a glimpse six years ago into what caring for him looks like presently, I would’ve freaked out, too. And yet, we’re doing it. Not always well, and never easily, but we are getting through, day by day.

For now, I’m sticking with the hat and eyeglass filters and avoiding a glimpse into our future. I can’t handle tomorrow’s stress. Today has enough of its own. I don’t know exactly what the future looks like, but I do know…there will be grace for that.

Dear Evangelical Church,

You pushed her out.

When she was small, you filled her head with stories of a big God who fought for small Davids against giant Goliaths, who parted seas for weary people chased by strong men, who protected the righteous from the hungry lions and a fiery furnace, and who sent His Son as a baby for a poor teen mom to mother.

You gave her prizes for memorizing Bible verses:

  • For God so loved the world He gave his only son that whoever believed in him should not perish but have everlasting life.
  • A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.
  • Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.

That was the God she knew and understood. The one who cared for the underdog and the marginalized. The God who protected her and provided all her needs. The God that loved her and was FOR her. The God who died for her simply because he couldn’t live without relationship with her.

And then, she got older.

She insisted on breaking arbitrary “rules” like the time she threw an orange at a friend across the church foyer and you turned it into a cataclysmic event and moral failing. In the ensuing drama, it was never mentioned that she was only there because she volunteered to watch the small children for the moms who were in a meeting. The focus was simply on her blatant “disrespect” for the 80s decor and furniture.

Or her inability to meet the letter of the dress code because of her tall stature, with her long legs and six-foot frame. Even dresses that were technically within the limits looked to be out of bounds, leading to loud whispers and rampant gossip.

She was tall and appeared confident and was expected to act and react with the wisdom of a forty-year-old, even though she was only just a girl. She was treated with disdain.

She learned from you that God’s rules are subjective, his love conditional. He desires relationship with her, but only if she behaves a certain way, and she will never be sure of what way that is.

And then, she reached adulthood.

And you showed her by your social media pages that refugees are scary and will harm our children. Immigrants will take our jobs. The “others” bring inequality on themselves.

She learned from you that God will not protect her. He will not provide for her. If other people were not created in His image, surely she wasn’t either.

After she got to know the “others” first by serving the homeless, and later moving across the world to serve those scary refugees, she finally concluded that your god doesn’t even exist. It was a logical leap. You were, after all, wrong about so many things.

The unconditional love you told her about was just a fairy tale, a myth, as you proved by your fear, your judgment, and your actions.

She walked away entirely.

I have a confession. I admire her for that. It takes great courage to reject the life and the lies in which you were once entrenched, to leave behind what you know, and walk alone.

Of course the whispers and the judgment only intensified with her decision, but she honestly doesn’t seem to care as she forges her own road.

It’s taken me so many more years to see what she found upon entering adulthood. I bought the lies so much longer. Although, our conclusions are different, we are so much alike. Our deconstruction allowed us both to break free from the capricious rules, from tough love, from the politics so entwined with the church.

For her, it led to atheism.

For me, it led back to unconditional love, to scandalous grace, to freedom. I found Jesus, again. And, while I’m still a little sketchy on what that means for my life, I’m clear on what it means for those around me…unconditional love, scandalous grace, and freedom.

Including my atheist daughter who continues to give of herself and serve those she finds in need.

Because there is grace for that.

From Delight to Crap

Recently, we took the whole crew to the human trough, also known as Golden Corral. Our oldest was busy, but we also had our married daughter, her husband, and baby, so eleven of us.

This visit, I decided to let Bo (9yo with Ds/ASD) come with me to fix his plate so he could make his own choices. He was ecstatic and delighted in carefully making selections of all the foods he loves. I noticed, like our neurotypical kids, his plate of food was all in the same color family…from beige to bright orange which made me smile. He wasn’t a fan of the fried shrimp he chose, but he loved the sweet potato casserole for which we got seconds.

Like all kids, dessert is where his true passion lies and he was in heaven with all the choices. After looking the selection over carefully, he finally landed on a chocolate cupcake with pink frosting which he quickly devoured and was rewarded with another one. After he finished that one, he noticed his brother, Eon, had just returned to the table with an exact duplicate. He very excitedly pointed and showed everyone around that Eon had a cupcake. At first, I thought he wanted Eon’s, but it soon became clear that he was just excited someone else was going to enjoy the thing he loved. He mimicked each bite his brother took with excited clapping in between. If he could speak, it was so obvious he would’ve been saying, “Isn’t it amazing? That frosting is so good! Don’t you love it?”

As empathy is a skill he has not yet mastered, we were delighted with his delight for his brother. We were all smiling and laughing. I winked at my husband and when I looked back over to Bo, his whole hand was suddenly covered in poop. It took a second before we comprehended what we were seeing. Then, the whole table erupted with cries of, “EW, ICK!” from the younger kids. I dove for my purse that had the wipes in it and hastily wiped it all off, while my dear husband prepared to scoop him off to the van for a change of pull-up.

Immediately, I was horrified and embarrassed, although I tend to roll with these things pretty well and it didn’t take me too long to laugh it off.

I share this story because it is so typical of our life with disability. We have very high highs, followed a split second later by very low lows. Usually, as in this case, we have a great sense of humor and are able to bounce back pretty quickly. But sometimes, it’s a lot and more than a little overwhelming. I know that we are not alone in this experience (okay, maybe we are in this particular experience, but I’m speaking more generally.) I know of many great families who are currently dealing with the “lot” part of parenting kids with disabilities.

I don’t have answers on how to live in daily bliss with these types of challenges. I’m not great at keeping my cool when a child is knocking over chairs and threatening to upend the dining room table. I could use some work on how to calmly endure backseat spitting when a sibling is losing their shit over it. I definitely need some tips on how to keep my sanity when the one thing that calms Bo is his favorite youtube videos of children shrieking and behaving badly.

The only thing I do know is that this life has given me a new lens. I see the world differently. I see people as more valuable. I am more convinced of Imgago Dei in everyone, regardless of ability, class, education, choices, behavior, or status.

I recognize that everyone has a story to which I’m not privy. I can and should withhold judgment, always. Acceptance, inclusion, and unconditional love are key. I have a much deeper understanding of grace and now recognize that everyone needs it including, maybe especially, myself.

Delight and crap seem to be the two speeds of my life right now and, as always, there is grace for that.

The Good, the Bad, the Serb.

It struck me again as we were snuggling after his morning shower, the overwhelming sense of joy because I get to be his mom. It doesn’t happen very often anymore, maybe because I’m lulled into complacency after six years or perhaps the challenges outweigh the joy, at times.

I realized that those who aren’t walking this road can never really know the contented feeling of snuggling a nine-year-old boy who acts very much like a young toddler. The thought of similar things when I was beginning this journey caused fear to well up. I could feel my throat constrict and my stomach feel queasy with panic over the very things that are now daily life.

I couldn’t have imagined being okay with a pre-teen who prefers musical infant toys to video games, or changing diapers on a child too big to pick up. I would’ve been appalled to think of fixing sippy cups for a third-grader.

Most of us spend our whole lives trying to mitigate disaster, to avoid pain, and to dodge unpleasantness. I still do, yet this boy of mine continues to teach me that embracing the hard has its own rewards.

When we’ve spent literally years trying to teach him how to live in a family, and he seeks us out to sit with us while he’s playing on his tablet, I am so grateful. He came to us without knowing how to show affection and not having any desire to learn, so I don’t take it lightly when he leans in for a kiss. Because he spent so long ignoring every question as his little non-verbal self didn’t know how to respond, I am delighted when he answers his brother’s query about how school was with a loud, “Good,” even though he’s likely just parroting what he was taught to say.

Things that seem so simple and trivial to most, are monumental in our world.

Please know the good does not make up for or in anyway overshadow the ugly. There is an inordinate amount of hard in parenting this child. Late night ER visits, physical pain from playful bites or aggressive throws, shitastrophes of epic proportions, constant neediness, broken furniture and electronics, and so many questions and self doubt.

Are we doing this right? Is there a right way to do this? How do we calm him down? What happens if we can’t? Will there be a day we cannot control him? What will puberty be like? Are we doing enough? …a never-ending sea of questions.

He wasn’t what I was expecting those six years ago when we flew across the world to add him to our family. I expected, no I wanted, a stereotypical child with Down syndrome. I wanted it to be just challenging enough to make us look good, but not so hard as to effect our daily lives. Laughable, I know.

This kid that I wanted to seamlessly fit into our family wrecked us. We are forever changed, indelibly altered but, though life will never again be easy, I am beyond grateful.

Perhaps, just maybe, without the pain, the joy wouldn’t be so powerful; without the difficulty, there would be less delight.

One thing I’m absolutely sure of though, there is grace for that.

Humility and the Prairie Dog

prairiedogI ran over a prairie dog on the way to the coffee shop. I swerved as he darted into my path, but he changed course in a split second, right under my tire. I checked my rear view mirror hoping, somehow, he’d miraculously avoided certain death, only to have my fear confirmed. I was unprepared for the sudden wave of nausea that hit me. I began to tremble, and had to pull over as heaving sobs wracked my body.

As cute as the little critters are, I knew this wasn’t about hitting a rodent.

This is the fallout from weeks of advocacy for the weak. (Really months and months as each new “policy” threatens a vulnerable population.) I’m exhausted, shredded actually, emotionally spent. I’ve had numerous sleepless nights. I’ve researched until my eyes burned, making sure I’m sharing the most accurate information. I’ve been on the phone with the offices of all of my elected officials and sent countless emails. I’ve raised funds for non-profits that hire immigration lawyers to represent the children and parents at the border.

I’ve tried to educate and counter the prevalent misinformation abounding on social media with facts. I’ve challenged theological fallacies with sound doctrine in hopes that eyes would be opened and hearts changed.  I’ve been called a “libtard” and “condescending”,  told I was being “used by the media”, accused of being “naive” and “stupid.” I’ve felt gutted by my fellow Christians who staunchly defend a policy that strips children of their parents and cages them, in the name of following the law. I’ve been deeply saddened by a complete lack of empathy and compassion on the part of those who call themselves Christ-followers.

I’m worn out.

Should I simmer down and step away from this type of thing?

politicsThere are those (almost exclusively on the other side of this “issue”) saying we should all just get along, and stop “letting politics divide us.”

But they don’t understand. This is not politics. This is PEOPLE. It’s about imago Dei. It’s about humanity. I cannot walk away from the mistreatment of fellow humans. I cannot let bygones be bygones when it comes to people. 

Some may be surprised to learn that I do believe it is a government’s responsibility to control its borders. Immigration reform is a necessity. That is a political issue on which most of us agree.

But it is a Christian’s responsibility to love everybody, always…to love our neighbors as ourselves…to treat others as we want to be treated. I want to be someone who acts justly, loves mercy, and walks humbly. (Micah 6:8)

It will be a shock, I’m sure, to realize that it’s the last part I struggle with the most. (Read, sarcasm.) Justice and mercy are how I roll. When I see injustice, everything in me burns with righteous anger which fuels me to right the wrong. My heart is rooted in mercy for those who struggle in a society where the deck seems forever stacked against them.

Oh, but humility. Argh.

When I’ve picked a hill on which I’m willing to die, when I’ve done the research and I know for fact injustice IS occurring, when people are suffering and time is of the essence, and some yahoo on social media posts false information justifying the injustice in the name of MY GOD?!? I fear I don’t respond very humbly.

pearlsAnd yet, humility would very much save me so much angst. It would keep me from casting my pearls before swine. It would prevent me from engaging in futile arguments in which my blood pressure raises to perilous levels. It would remind me to walk away. I can educate, but it is not my responsibility to change hearts. It is not up to me to condemn those whom I believe have lost their way and chosen nationalism over Jesus, safety over compassion, comfort over love.

Maybe, if I had chosen all three: justice, mercy, AND humility over the last few weeks, instead of cherry picking my favorite two, I would’ve had the emotional reserves to mourn for the prairie dog appropriately, instead of sobbing uncontrollably for a rodent, God rest his soul.

Oh, fix it, Jesus. There is grace for that.

Not Consumed

We went to a nearby lake in the mountains the other day. The sun was shining and the air was hot. The water, however, was freezing. The kids were undaunted, jumping in and yelling, laughing, and splashing. I stuck my foot in and when it went numb, decided swimming was not for me.

20180415_192410Toward the end our visit, I said something to my husband about wishing I’d brought my suit. “Oh yeah. That’s why you’re not swimming,” he teased. Always one to take the bait, I immediately ran into the water to my waist and dove under.

The shock of cold was electrifying. I shot up out of the water and could not catch my breath. It’s like I didn’t remember how to inhale. A train sound was rushing through my ears, my arms were leaden, and my lungs refused to work.

I remember so well the complete peace and assurance I had when we were in the process of adoption. I was worried about logistical things like funding and paperwork, but I never doubted that what we were doing was absolutely right. Taking a leap of faith was exhilarating and I had no doubt that God was going to be there to catch us.

Only I expected Him to catch us before we encountered the pain. I didn’t know we’d fall through the thunderstorm, be blown by hurricane-force winds, break the tree tops, get hung up on the branches, scrape our bodies on the bark and twigs, and land in freezing water.

It has been so hard.

It has been so amazing, so incredible, so undeniably worth it, but so very, very hard.

My faith almost did not survive. It certainly doesn’t much resemble what it was. For this, I am beyond grateful. But it hurt in the deconstructing. Everything I thought I knew was challenged. Up was no longer up. Everything was down. Nothing was certain. All was debatable until proven true.

Honestly, it took years before I even had the time or energy to deal with matters of faith or emotion, before I could process any of it. At first, it was simply reacting and responding, trying to keep afloat. There was a film of disappointment over my life that what we were walking through was unmanageable. No matter how many Bible verses I clung to or how many prayers I prayed, I felt immensely alone, completely on our own. It appeared He was not there.

I begged for sleep, but four hours a night was all I was allotted. I begged for answers, and while some came, we were always left with more questions. I craved fellowship and friendship and was rejected for failure to fit the mold. My circumstances were no longer relatable, and in my stress and exhaustion, I could no longer hold the mask of pretense.

I felt a slave to the “supposed to bes” of happily ever after, love conquers all, and the redemption narrative that is the public face of adoption. Our story paled in so many ways.

And where was God in that?

I still went to church (although not nearly as faithfully as pre-adoption). We often sang, “Oceans.” I stood stone silent each and every time, the bile of bitterness at the base of my throat, irritated by the carefree way those around me crooned the lyrics. I wanted to scream a warning, “Don’t you know what you’re signing on for?!? You could be drowning like me!”

 

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

No way would I ever trust God again with my future or my life. That’s what the experience taught me. God could not be trusted.

I still believed in God. I even believed He was good. But I didn’t believe Him.

Like the freezing water I plunged into at the lake, I felt God had thrown me into the deep end and I couldn’t swim. The shock was too much for me. I couldn’t breathe, I couldn’t move my limbs. No lifeline was thrown.

What I couldn’t see at the time was that slowly, my body adjusted to the temperature and breathing returned to near normal. Although still in deep water, I could now tread it and keep my head above it. Sometimes, I even felt forward motion toward the shore, although often a wave would knock me back. And when I felt I couldn’t go any farther, He taught me how to float.

We sang “Oceans” this morning at church. I sang, too. Softly, at first, but then I realized I meant it. I trust Him. It’s a bit tenuous and I’m still finding my way.

My faith is tender in some ways, but there is depth to it I’m just beginning to explore. I’m a little raw, often reacting when a scab is prodded or pulled. For example, I heard a sermon today in which our pastor said something like, “We can walk through fire and not be singed. Our clothes won’t smell like smoke.” Isaiah43I know the Scripture well to which he was alluding. It was the passage that got me on the plane in Chicago for our international flight to our son.

When the pastor made the statement, tears poured down my face. Because that was not my experience. I know that sometimes we walk through fire and we are burned. We come out charred, in need of surgeries, debridements, and rehabilitation. It is a long, costly, and painful road to healing. However, if we walk through the fire and are burned, we are not consumed. That is the hope I know to be true. That is the hope to which I cling.

I’m still here. Still swimming, often breathless, discouraged, exhausted. But then, some words of encouragement from a fellow swimmer, an unexpected current to ride, or just some extraordinary beauty in an ordinary day will buoy me, and I’m okay.

I don’t know why other people are able to walk through water or even walk on it without waves threatening to engulf them. I don’t know why some walk through fire and emerge without a hint of smoke. That is not my story.

I only know this: He is with me.

In raging waters or scorching flames, He is here.

And there is grace for that.

 

No Blue Here

This World Autism Day, I am not wearing blue. You won’t find cute puzzle piece picture frames on my wall. We will not have cupcakes and invite the neighbors as we did for World Down Syndrome Day a few weeks ago. I LOATHE autism. With every fiber of my being I want to vanquish it from our lives. It takes all that is good in our family and shreds it.

Yesterday, on a beautiful Easter holiday, full of celebration and joy, I was peed on, bitten, scratched, head butted, spat on, pinched, and had furniture and toys thrown at me. Bo was out of control and we were unable to regain it. Nothing in our bag of tricks worked. It was discouraging and disheartening and demoralizing and depressing and any other sad “de” words I can think of. 20180401_152037

Do you remember having a two-year-old? Do you remember her lack of impulse control? Do you remember holding so tightly to his hand when you went into a store for fear of what he might knock over? Do you remember being caught off guard when she suddenly threw her plate off the table when she didn’t want dinner? Or having a toy whacked into your face when you were resting your eyes on the couch? Or the “throw-himself-on-the-floor” temper tantrums?

Imagine living like that daily, for years, only add on 60 pounds and the anxiety of never being sure how that child will react to a stranger. Is he going to spit in the face of the elderly man giving him knuckle bumps at the grocery store? Is the cup he’s currently drinking so sweetly in church going to be launched into the back of the lady three rows up? Is he going to reach out a grab a fistful of the nearest toddler’s hair?

We are constantly in a state of red alert, always scanning, forever anticipating, and yet, frequently caught off guard. It’s exhausting. There is no down time, no relief.

We love him. We have sweet and wonderful moments with him. He snuggles us, gives great hugs, seeks us out for affection, and teases us…but always on his own terms. But then he retreats, the veil goes down, and we are closed out. I see him try to reach us, showing us anyway he can that he is angry, or hurting, or sad. Worse, if we accidentally hurt him, for example, bump him with a door as I did the other day, he holds the hurt in so tightly and lashes out. Tears leak out after a few minutes, but he refuses comfort, not understanding that the pain was unintentional.

I am afraid of the future.

As he gets older and bigger, I don’t know how to keep him safe. I don’t know how to include him if I can’t keep those around him safe. I want to reach him, to comfort him, and to calm him. I want to guide him and parent him.

But I don’t know how.

Autism and its friends, OCD and ADHD, have stolen this kid from me, even though they had him first. I want him back. We can even share him if I can just have enough to work with.

That’s why this day is so hard for me. There is no celebration today, not for this. We celebrate Bo, always and forever. He is worth it. We celebrate his life, his light, his joy, and even his Down syndrome, but not his autism. We barely tolerate that.

received_10212289369841882I applaud those braver, stronger folks who are bringing awareness and wearing the blue. Maybe awareness will bring assistance and all of us can get the help and hope we need. But today, I grieve and mourn. I throw myself a pity party and whine a little, cry a lot, because tomorrow and the next day, and the day after that, we forge ahead. We research, plan, adapt, and duck. We do what we must to love our boy, autism and all.