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The Year of the Red Rain Boots

May 9, 2018

To the little boy who grew to be five,

img_3333There are these red rain boots that you adopted about two years ago, a hand-me-down from a much loved neighbor-friend. Even though you were gifted brand new rain boots (still a touch too big) for your birthday this year, you return day after day to these red ones. The pull-on handles have recently broken off, your toes squish and jam into the end of them, and yet, you wiggle into them most every day (when you remember where you left them). The funny thing is you usually wear these boots when it’s not raining; in fact, when it is raining, you’re much more likely to run outside and stomp barefooted in the puddles, letting your inching toes squiggle down in the gooey mud. And it’s also very likely that you’ll accidentally leave your boots anywhere but put away, like the time you left your red rain boots at the play park behind our house and a hitch-hiker of a snake found his way inside, under my dining room table. (I’m not sure I’ve forgiven you for that one yet; check with me when you turn 21.)  And I think that whenever I think of this year that turned you five, those old, scuffed, lying who knows where red rain boots will be the picture I see first.

I never knew rain boots could be so vital in a little boy’s life. Then again, I’ve never known a little boy just like you.

A little boy with sandy blonde hair and deep blue eyes who is also possibly the loudest person I know. A little boy who still sometimes says Janjuary and talks about his Papaw who passed away last summer and wonders everyday if I’ll let him bake whatever he wants to. A little boy whose energy is fueled through music, and people, and emotions. A little boy with deep emotions and unhindered affection. A little boy who has exactly two quiet spots in his life — the backseat of our van on the way to preschool and sitting at our art bar, where you sometimes spend endless minutes drawing and creating and crafting and writing {love} notes. I try not to interrupt your contemplation and your focus because I think something sacred is happening in those moments.

Benjamin Lucas, this year has officially launched you out of toddler-hood and into boyhood. I wonder how your delirious joy for life will evolve. I wonder how you’ll do walking into elementary school for the first time. I wonder how you will surprise, delight, and inspire us. I wonder if this will be the year that you outgrow those red rain boots.

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All Clear…Mostly

May 3, 2018

IMG_5768Since the last update on Reed, he’s had the CT scan, a cystic fibrosis test, and a bronchoscopy, all to see what underlying immunological and/or structural issues might be contributing to the pneumonia he battled so frequently this past winter.

  1. The CT scan showed thickening in his bronchial walls. While they had an IV in for the required contrast dye, they also drew blood to test his body’s immune system. Those panels all came back in the “normal” range.
  2. Next up was a sweat test for cystic fibrosis, a super simple, non-invasive skin test. This test came back slightly elevated but the doctor felt confident that he does not have CF, especially after…
  3. The bronchoscopy that required sedation because they sent a tiny camera down into his lungs to check out the structure of his right lung (where the pneumonia he’s had 15 times in his life usually tends to settle). They did suck out a mucus plug (lovely, I know) that they sent off for testing to see what microbes might be growing in his lungs (haven’t gotten that report back). Overall, the structure of his lungs look mostly in tact, and the doctors attributed the bronchial wall thickening to damage done by the pneumonias.

The basic bottom line is there’s no further testing needed or any new regimen needed other than to boost his immune system during the times of the year that he’s more prone to getting sick (beginning of school, changes in season, etc)! So I say mostly clear because only time will tell how his body will handle any future respiratory issues we face. But for now, I plan to enjoy a wonderful summer with him and my other two monkeys.

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Reed, Reading, & Pneumonia

April 6, 2018

28698570_10155608645043661_86924765004086425_oI rarely write straight forward updates about our kids on this blog (usually just around their birthdays), but I’m finding myself wanting to document more of what’s going on in their lives, other than just the quick Instagram and Facebook posts that happen. And because writing is my outlet and 2018 has been quite eventful, perhaps I’m feeling the need to process more.

Reed especially has had a lot going on because of two major events in his life since December.

First, after a year and a half of virtually no asthma or pneumonia episodes (thanks to excellent care we receive from Dr. Losby’s team at Maximized Living), he developed pneumonia in December as a secondary infection from the flu (this flu season has been so brutal!). After being diagnosed twice more with pneumonia in January and February, the doctor believes that the original pneumonia never completely cleared up (even though he was hospitalized for the first two rounds of it). Honestly, that felt very deflating because we’d seen so much progress before that in terms of his health. As a result of that triple-pneumonia bout, Reed has been seen by a pulmonologist and an immunologist, which has resulted in an appointment for a CT scan of his lungs to see if there is a structural issue contributing to the recurrent pneumonia (he’s had probably a dozen pneumonia diagnoses in his 7 years, and most of them tend to show up in the lower right quadrant of his lung).  Aside from that issue, we also consulted with a developmental pediatrician this month because both his school teacher and his pediatrician are concerned about his anxiety; we’re hoping that the out come of that visit will be behavior support therapy that will help him (and us) learn how to best respond to and manage the anxiety (which is a very common symptom for his disorder). This quarter of 2018 has been overwhelming and exhausting because of the illnesses and multiple doctors’ appointments, but it’s proven to be an ample opportunity to practice gentleness in place of grit.

And to balance out the difficulties, Reed took a monumental step forward in school. HE LEARNED TO READ! One of the realities of having a rare genetic disorder is you’re never guaranteed any milestone and because of his apraxia, it can be particularly difficult to see how smart that brain of his is (though I know it is, whether he can actually prove it on a test or not). I knew that his teacher (who is AMAZING) had been working with him on recognizing sight words but I hadn’t seen the fruit of that work until one day in January he was showing me a worksheet from school and started reading it to me. A couple of weeks later we attended his school’s reading night, and I went up to his teacher just to say thank you for helping him learn how to read, and I of course, started crying before I had two words out of my mouth. Then she started crying, which made me cry even more. It was a sweet moment, and I don’t take it for granted for one second that Reed has the most amazing teacher who works so hard for her students. She is a blessing to us for sure.

As I process all of these happenings, I’m reminded that of one of the first truths of a special need’s journey: progress is progress, no matter how little or big or how linear or circuitous.

Grit and Bear It

February 9, 2018

Do you know that scene from Braveheart where William Wallace turns away from his band of soldiers to face the coming onslaught, every muscle taut, letting crazy adrenaline fuel his war cry as he hurtles himself toward battle? I bet you can see his blue-streaked face now. That, to me, is THE picture of true grit.

I’ve been William Wallace for the past six years. And it’s wreaked havoc on my relationship with Reed.

Without even realizing it fully, six years ago at Reed’s diagnosis, I adopted the trite (and naive) mentality that what doesn’t kill us, will make us stronger. My Americanized sensibilities encouraged me to pull myself up by my bootstraps, put my head down and get to work, and turn my focus towards self-sufficiency. Perhaps some of my self-sufficiency grew out of a disappointment towards God for allowing this kind of situation in my life. If I couldn’t depend on God to bring good things into my life (because were there enough good things in this world to outweigh this one truly terrible thing?), then my only option was to depend on myself.

In parenting Reed, I plowed through month after month of doctor and  specialist appointments, question after unanswered question, and days and weeks of exhaustion, learning to live in our new reality of life with special needs.  Even when I was tired and felt like life wasn’t fair and just plain didn’t want to face reality, I still had to. I kept pushing through, somehow forgetting Jesus’ call to the weary to come to him for rest. I largely ignored my emotions and just kept moving. These legitimate emotions, left unattended to, did not just disappear. I just kept muscling them back down under the surface.

The problem is when we force a muscle to function the wrong way for too long,  it compensates for the added strain, performing as we’re asking it to but developing scar tissue. Similarly, months and now years of facing Reed’s challenges with grit has created emotional scar tissue because I wasn’t made to live life simply by my own resolve and courage. As the emotional muscle fatigued under the constant strain of grit, disfigured emotions formed and influenced how I interacted with Reed. Rather than a person to be loved warmly and kindly and gently in all tenderness, he became a difficulty and task to be managed. Rather than cultivating tenderness in my heart for a very special child the Lord had given me, I began growing bitterness and resentment towards him. As the scar tissue thickened around my heart, becoming numb and difficult to cut through, emotional apathy and resentment began to grow. I had to learn that my relationship with Reed is not a crisis to manage but rather a life long relationship that will thrive more through tenderness than grit.

In contrast to grit’s self-focus and self-determination, Scripture encourages us to be tender-hearted towards others.  This means being gentle, kind, affectionate, compassionate, sympathetic, warm, giving, and vulnerable. Both Peter and Paul call us to this tenderness in our relationships, and it’s a tenderness we cannot produce apart from work of the Spirit in our lives. Peter writes, “Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind,” and similarly, Paul encourages us to “Be kind to one another, tenderhearted” (ESV, 1 Peter 3:8; Ephesians 4: 31).  If we instead muscle our way through difficult circumstances with ourselves at the center, we’re like rocky soil in which it becomes difficult for new, tender growth to emerge, and ultimately our relationships suffer. Tenderness, on the other hand, enables us to  bear the image of Christ to others and learn that we don’t have to white-knuckle our way through life.

Just yesterday, I was driving to the hospital to sit with Reed who had been admitted for bilateral pneumonia, a common health complication for him. As I drove down the interstate, counting that this was probably our 11th or 12th hospitalization, I felt the familiar tug to just put my head down and power through, to ignore the emotions I was feeling and to think I had to bear the weight of all this on my own. But in this moment God graced me with that reminder of the importance for gentleness and compassion in this very situation: gentleness and compassion from God, through me, and for Reed.

 

Green Beans

January 24, 2018

They became the soft, mushy backbone to our Sunday dinners, a staple that even as an adult I crave and come back to again and again for their nourishment. As a child, I ate these green beans by the bucketfuls. Sunday after Sunday would roll around, the thick scent of fat back melting into the gargantuan pot of stewing green beans. I never let her down, at least not with this vegetable: my mom could proudly proclaim that her kids ate their vegetables.

The process of cooking down these beans started usually Saturday afternoon, would periodically stop overnight (beans stored in the fridge because Mom swears they’re better if you do the fridge step), and then resume cooking until lunch the next day. We weren’t much for gardening (at least not back then; two working parents, small kids, a sometimes consuming church life), so it usually meant opening up one of the giant cans of green beans bought at the local Food Lion on our weekly shopping trips.

Crank open the can. Dump the beans in. Turn the burner on almost the highest setting. Let ‘em cook hard. But watch, make sure all the liquid doesn’t burn off. Add some fatback if you have it. Let the cycle of cooking hard and cooking down run continuously, again and again. Add an undetermined amount of salt. Oh, and water; add the water (I always forget this step) when the liquid is getting low. Always come back to the pot to make sure those beans aren’t burning. But you must cook them hard enough to bring out that perfect, slightly sweet, definitely salty flavor.

I don’t know how long she cooked those beans most Sundays but I was always in awe of the process. Always in awe that she didn’t forget about the beans. Didn’t burn the beans (like I did the first time I tried). She coaxed the most delicious taste straight out of those beans, and it tasted like exactly like Sunday dinner should. So good that I’ve known people to drink the left-over juice straight from the bottom of the green bean pot.

Even when arguments erupted during the week, I always knew Sunday dinner was coming. Even when my sister refused for the 768th time to play with me, I knew Sunday dinner was coming. Even when we uprooted our life and moved to a new town in middle school. Even when boys broke my heart. Even after my nuclear family dissolved, Sunday dinners still came. Even when life rose and fell with its terrifying unpredictability, those green beans filled my plate again and again. And I savored the sweetness and the saltiness and knew instinctively, even then, that life mostly tastes just like those beans.

Remembering with Light

October 15, 2017

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Zoey and Eloise.

Though these two names are stitched into my heart, I’m grateful for a reminder to pause and remember with their parents today, October 15th, Pregnancy and Infant Loss Remembrance Day. There’s a 10 year old and two year old little girl missing from my family’s gatherings, and despite the years that pass, their absence is felt. There are times, even now, ten years later, I find myself ruminating over who they would have been, which parent they would have most looked like, whose quirks they would have shared, and how uniquely them they would have been. To have been brought so close to the brink of knowing them and then to so unexpectedly lose them, is still just out of reach of words for me.

But sometimes it’s easy to shrug off such a day and maybe even think there’s one too many of these remembrance-type days. But for those of us who have stood facing the onslaught of grief in the wake of this kind of loss, knowing that the greatest fear is always that they will be forgotten, a day of remembrance is important and meaningful.

But why? Why is infant loss so hard? So gut-wrenching? I’m sure the answers are as unique as the individual who experiences them. For me, when my sister Erin learned at 36 weeks that Zoey had died in utero, I was devastated because it felt like the rug had been ripped out from underneath our family. After unexplained infertility and unsuccessful fertility treatments and then many months of prayers, Erin surprisingly became pregnant without any outside intervention. We were ecstatic. It seemed like God had heard our prayers; so why eight short months later were those answered prayers being taken back? What kind of cruel joke could this be?

I was completely devastated and honestly my vibrant faith in a good, loving, life-giving God was shaken to its core. As I watched Erin shoulder this impossible grief, my spirit sagged under the weight of this loss, too. I know that my grief is only a fraction of what Erin experienced, and because of this, I never could understand why I struggled so intensely to regain my spiritual vibrancy after Zoey. I knew grief was normal, but it wasn’t like I had lost my baby. I think my proximity to and the primacy of the loss contributed; for the first time in my very manageable, neat and tidy life of faith, I confronted the unfairness of a loss so totally out of my control. Did I really believe all those things I had professed so easily about God? Was any of it every really true? I had operated under the assumption that if I prayed hard enough, faithfully enough, righteously enough, my prayers could keep this sort of thing far from me and my family. I cringe a little at my self-righteous, naive thinking. And to this day, I see that loss and the ensuing grief as one of the primary crucibles of my faith.

I know it’s naive considering all the terrible things that happen in this world. And I’ve even, at times, been incredulous at the ever-rippling effects that Zoey and Eloise’s deaths have continued to have on me and my faith. Then just a few weeks ago, I was reading an excerpt from the forthcoming book Love Big, Be Well: Letters to a Small-Town Church by Winn Collier, which finally helped me name my grief. One of the characters, Jonas, writing about friends whose 21 month old daughter had passed away, says, “It was my friend’s grief, but it became my crisis.” I wept reading those words because like Jonas, my sister’s (and then later my best friend’s) grief had become my crisis of faith.

Grief can make us frantically search for closure, but in the spirit of honesty, I haven’t found full closure, have never been able to fully reconcile my heart and mind with these losses.  To live in a world where in the natural rhythms of life, some babies never live outside their mother’s womb, is still heart-rending. For ten years I’ve continued to let grief take its course, have continued to let the questions linger, and have let these losses shape and reform my heart. And even without total closure, Jonas’s reflection on his grief brings me comfort: “Beauty, which I understand to be another word for love, offered the only hope I could imagine for the horror my friends had experienced. It was the only hope for the endless anxieties and labyrinthine questions I carried. I needed love in person, love powerful and alive. I needed beauty to overwhelm all the ugly. As I understood the Bible’s story, I needed Jesus.”

So to Zoey, the one whose name means life, and to Eloise, whose name is rooted in the word warrior, I will remember you for the love you infused into our lives and will always, along with your parents, remember you.

Happy 2nd Birthday, Ansley!

September 12, 2017

Dear Ansley,

Happy birthday, baby! Just a couple months ago I was worrying myself over your not-yet-talking ways. But, just like always, you weren’t in any hurry to impress anyone (least of all your mama). Instead, it’s like you woke up one morning and decided that was as good a morning as any to start sharing your words with us. You tell us about your boots (you’ve been living in those rain boots since we bought them) and say “I love-ee” (I love you) and scold Ree and Wu (Reed and Luke) while wagging your tiny toddler finger at them (I’m glad I have someone to help me keep those brothers in line), excitedly exclaim “puppy!!” at every dog we see, and ask repeatedly to go out the playground and ‘wing. Wash. Rinse. Repeat. Oh, and people often remark on how serious you are. But, baby, just look at these pictures. Serious? Nah, that’s just your poker face.

You are smart, determined, witty, and oh-so-sweetly sassy. I can’t freeze time. And I can’t keep you from growing up and growing out of all these ways I treasure. But I can capture you, bundle you up in my words. And then let you go, let you grow, let you blossom into the beauty God has made you. Because who you are, who you will become, I’m convinced, is better than any story I could ever imagine.

Happy second birthday to you Elisabeth Ansley.

Love, Mama