Posts tagged special needs
how are you?

We snuggled up on opposite ends of our oversized couch, sunshine streaming in the window enough to light the room that perfect hue of morning soft, of peace. She had come over with coffee in hand, one for each of us, because all attempts to catch up at an actual coffee shop seem to be thwarted by little people these days. But friends who get that, who can walk in to your home during naptime and squeeze one hour of heart sharing in to their day, and your day, they are a special class of blessing.

With my legs folded up underneath me and hands wrapped around my warm latte, she started with the question we all start with, the default, the one that is clear enough to be universally understood but flexible enough to be taken to any level one chooses to answer with.

“Katie, sweet friend, how are you?

*****

Maybe it is the season I am in, but the days feel so long. I am up before the sun comes through my eastward office window every morning, circling phrases in God’s word with the intention of carrying their truth far in to my day, but the impact so often lingers only as long as it takes me to walk up the stairs when the first little feet start to pitter patter above me.

I get breakfast ready, fill the baby’s bottle with milk and more often than not have to prop him up with a pillow—holding the third child is becoming more and more of a luxury time does not always allow me these days. I find the preschool bag and finally remember to look at the notes the teacher sent home the day before. We needed to help refill the class snack closet? I’ll grab some animal crackers next time I am at the store. I play hokey pokey with my words for ten minutes before I finally convince the four-year-old to let me comb her hair, and then I listen to her tell me a dozen times how much it hurts when I do. It does not hurt, it’s just part of the deal to tell me it does. I get the two-year-old’s school bag and fill it with his favorite snacks, things he will be motivated to work for at therapy, food that he will happily pick up his picture cards, matching them to the correct name, and hand them to the therapist for. We find socks and shoes and pants and shirts and does any of it match? It does not matter. If it’s clean, or clean enough, it works.

And we are off. One parent does preschool drop-off and another does therapy and the baby goes along for the ride. It’s 8:30am. The whole day is still ahead of us and I already feel like a crazy person and didn’t I read something this morning about nothing being outside of Jesus’ control?* Someday I will remember with clarity, and maybe some application, what I read just three hours earlier.

But I am good. I’m so good. Because this is all I ever wanted. This life, with little mismatched socks and long blonde hair that hates to be combed and three small people who need me for so many things, it is my dream job, and I don’t deserve it. It’s a contradiction of sorts, this incongruity between the life I prayed for and the feelings I sometimes have for it in the middle of the day to day minutiae. But when everyone is buckled in safely and we are all on the way to our places for the morning, I’m overcome with gratitude. What beautiful work I’ve been given to do.

So yes, I am so, so good.

*****

I went in to this new year with many dreams for my words, for the writing I love to do. I have a book proposal and essay topics outlined in pink and yellow post-it notes on the wall of my office and I look at it every day, sometimes with confidence and sometimes with a cringe. What do you want to do with this, Jesus? Does the world even need more words right now? Of course the answer is no. The world does not need more words; we need more quiet, more listening ears. But the world does need more obedience, more humble disciples doing their best with their gifts to make much of Jesus and not make anything of themselves.

Perhaps that is the source of my tension. I really have nothing to say if I am not in some way talking about how things only make sense in my head because of God, and didn’t I just read that nothing is outside of Jesus’ control? But in a world full, so full, of good writers and beautiful creators and social media mavens giving advice on how to increase one’s platform, my head is leaning in and listening and reporting back telling me “yes, yes, do all those things and keep-up-with-the-hypothetical-‘writing Jones’. But my heart pauses, telling me that my words should only be building a platform for the gospel to stand on, not me. Never me. What on earth do I actually have to offer from that platform?

But I am good. I’m so good. Because this is a beautiful tension to wrestle out. This life with a love of words and an even greater love for Jesus, it is my privilege to do the hard work of creating something meaningful but staying small in the process. It’s a contradiction of sorts, this incongruity between the dreams of ‘being a real writer!’ and the conviction that I am supposed to be the smallest, most insignificant part of that dream. But at the end of the day— or maybe I should say at the end of an essay— when somehow my own heart is still and in awe of the way God is weaving every detail of our stories into the most glorious picture, I’m overcome with gratitude. What beautiful work I’ve been given to do.

So yes, I’m good. I’m so, so good.

*****

There are a hundred moving parts to our days, and every one of us has a posture toward God that affects how we handle, and what we build with, all of those parts.

Some days it is hard, it is really hard.

Some days it is fun, it is really fun.

Most days it is a mix of those things, like life generally is. We rejoice and mourn, celebrate and repent, gather and find solitude, and do our best to be busy with the right things.

So how am I?

I am a sinner saved by grace. It’s a contradiction of sorts, this incongruity between the life I deserve and the one I have been given because of grace. I am still figuring this all out, and I think I always will be. But when I think about that question, “How are you?” and I hold out the things that make up who I am, and I know what—I know Who—they are all for, I’m overcome with gratitude. What beautiful work I’ve been given to do.

In all of it— in the mothering and cleaning, the disciplining and special-needs-learning, the good work of words and the important work of loving others, in all things, God has supplied all I need not to make it easy, but to make it.

So I’m good. I’m so, so good. Because God is. May that always be my answer.    

*Hebrews 2:8b

learning how to pray

Sunday morning brought with it the most beautiful gift: sleeping children. I was awake just before 5:00am and ninety minutes later my home was still quiet, still dimly lit, still a peaceful space for my heart to lean in and listen. Which was exactly what I needed to do.

*****

Cannon has two appointments this week. Six if you count speech and occupational therapy, but those just feel like our rhythm now, hardly worth noting as appointments. But this week has been on my mind for a month. Whenever I know there will be clipboards and professionals and more of the same kind of paperwork for mama, the trepidation slowly seeps in to my heart like the fog of an early winter evening. In our rational minds we know the fog just didn’t show up, it came slowly and steadily, only growing in density at the slow pace that fog rolls in. But why does it feel like it just showed up, like it was clear and crisp one minute and the next we can’t see? Feelings can be tricky like that.

Still, I’m not entering in to this appointment as I have in the past. Six months ago I walked in to a room full of observers and I had my arsenal of disclaimers and qualifiers and sometimes but not always explanations for every delay, every flag, every disinterest. My heart was not ready for the thoughts of others then, because this was just a speech delay, just a boy growing in his own way on his own time. And now it is more than that, but my heart can finally handle it. It didn’t get easier, we haven’t had a breakthrough, and tomorrow is still as uncertain as ever.

But I think what happened is that I finally learned how to pray.

*****

In the still of my morning, I started looking back in my journal. I didn’t plan to; I kept thinking someone would be wrestling their covers off the beds upstairs and groggy calls for mama would soon follow. But it stayed quiet. I will never stop being thankful for the days when I don’t have to chase quiet, when it just shows up at my door like a surprise gift wrapped in brown craft paper and raffia.

But the journal. It was one I started almost exactly a year ago, fully pregnant with my third baby and unaware in every way of what my heart would be navigating in the months ahead. I turned the pages along with the months, revisiting prayers and hopes and lessons of the year behind me and the words revealed a slow, steady growth of anxiety— evidence of the fog settling in. My memory tells me life was clear and crisp one moment and then incredibly difficult to navigate the next; but the record of my own thoughts reminds me that wasn’t the case, that it did come slow, riddled with patches of sunlight before coming upon a space so thick we had to just stop and wait it out. Memory can be tricky like that, too, I think.

The look back on our journey, on how we found ourselves here in this place with three different pediatric specialists in my phone contacts, was both humbling and hopeful. It was humbling because I see that I had only one way out of this in my mind, and that was for it to simply not be true. I could not see the future in any way other than I always had: healthy, happy, and— dare I say— easy? And it was hopeful because I can say today with the most honest, truthful motives in my heart that I may not see a way out of this, but I see only good coming from it.   

I spent many months only praying for what I wanted, what I thought I absolutely could not do without. And this summer when I finally found myself at the end of the hope I was trying to manufacture on my own—the hope found in professional opinions and therapies and diets— that’s when the real hope, the hope in Jesus that does not disappoint, finally became tangible. It was certainly a street fight of a journey. It involved more than one instance of me letting my brokenness out on someone or something else and there were certainly tears. So many tears.

But this week, I’m not walking in to another appointment carrying my dreams in a broken cistern and I’m not armed with anything the world has offered me. But I am bringing hope, real hope. Because I understand now it never left us. I will hold my little boy’s hand, crouch down to put my face next to his and try to get him to say hello to the doctor; but then I’ll smile for him when he doesn’t. I’ll guide him to a table I’m certain he won’t want to sit at, and I’ll encourage him to complete tasks he will probably turn his face away from. I will cheerily ask him to demonstrate the few words and signs he does have, and then I’ll turn to the doctor and explain that he can communicate his wants at home, he really can. I will hold Cannon close when his body wants to run. And I won’t cry this time. Well, maybe I will. I’m still his mama, after all, and I reserve the right to cry any time.

And perhaps it won’t happen at all like this. Maybe Cannon will say hi, and sit at the table, and listen to instructions and smile with that most precious smile in the world. I don’t know how it will play out, but I do know that God has reserved the right to do at any time whatever might bring Him the most glory.

*****

I’m no expert on prayer. A beginner, really, even though I’ve been doing it most of my life. But I know what God tells us about prayer: that we should do it in any circumstance, with persistence, often, and that when we don’t honestly know what to say, “Your will be done, Lord,” is more than good enough.

So that’s what I’m saying this time. Saying it and really meaning it. Your will be done, Lord.

colored pencil faith

For much of my life, I have been pretty good with formulas. Following a prescriptive set of instructions has generally turned out well for me: work really hard, make the team; study a few hours, pass the class, you know the pattern. But God has recently given me a gift— a life-changing gift— something that not only turns the formulas on their head but completely shakes up all of the things I used to cling to for confidence. The gift is this: a beautiful, vulnerable, completely real awareness of my insufficiency.

Growing up in the church, I knew all about the vine and the branches metaphor, and I’m sure I responded to the part where Jesus says, “Apart from me, you can do nothing” with something like, “Sure, sure, Jesus. Love that verse and I’ll grab its truth every now and then when I’m really praying for some big blessing to rain down on me. But surely you don’t mean nothing. Look at how hard I’ve worked at life. I [mostly] avoided sexual sin and drinking and drugs and diligently prayed for a husband and a family. I mean, I’ve been a pretty good girl, don’t I deserve some credit? I go half way with hard work, you meet me halfway with a blessing, isn’t this how faith works?”

No.

(I think that could be called something more like karma, or the white privilege side of the American Christian Dream, but it’s definitely not called following Christ).

Apart from me, you can do nothing.

If I’m being really honest, for thirty-one years of my life I have harbored just the slightest bit of an I deserve a good life mentality and combined it with the words Yeah, but I did... Only now that circumstances are so far out of my control do I see the story of faith I have been living is not the story of faith modeled in scripture. Faith in my life has been the fifty-fifty kind of faith, at least a little bit dependent on how awesome I can be. But faith in scripture doesn’t really have that precedent, because scripture makes it real clear that we are, in fact, not that awesome.

Faith in scripture looks like standing at the edge of the sea knowing there is no way you’re getting across it unless God makes a path—and then he does. It’s marching around the fortified walls of a city knowing there is no way you’re getting in unless God breaks them down—and then he does. It’s mourning at the grave of the most important person in your life, knowing there is no way you’ll have hope again unless God walks out from that grave and says, “Woman, why are you weeping?—and then he does.

Scripture is crystal clear about who the Author of our faith is. (It’s Jesus). It’s brutally honest about who assigns the work of our lives and who equips us to do that work (It’s Jesus). And there are zero mixed messages about who justifies us (It’s Jesus). Yet somewhere along the line, I talked myself into believing it was mostly me and a little bit Jesus. And then I got married (stop one on the humble train), became a mom (stop 2), and am raising children that stretch my arms like a Gumby doll in opposite directions (a very good confirmation that I am never getting off this train). The mostly me theory has fallen apart in every way. I would never have said this out loud before; you would only hear me say the good girl answer that I could take no credit for my success and I give all the glory to God. Oh, but I was always taking some credit. Just ask my heart.

One of the many blessings God continues to reveal to me about raising a child with special needs is that needing Him each day is truly far more life-giving than relying on myself. Before Cannon’s struggles became apparent, I held on to the illusion that all of this depended a whole heck of a lot on me. But as the challenging journey ahead came more clearly into view, I learned—and am still learning—that the only thing that depends on me is my response: to give Cannon and my whole family my very best, diligently learning and trying and exploring options, praying for wisdom and discernment, and then resting— knowing that the outcome is the Lord’s, and fighting to believe that he will work that outcome for his glory. And our good. 

But that outcome will always be in spite of me, not because of me.

And what I know with a new kind of faith now is this: without the hope of Jesus on the throne, I will fall apart. I will treat a certain therapy or doctor or special diet as our savior and be devastated when those things prove to be what they are: imperfect and fallen. I will find a way to blame others for not pursuing me when a phone full of text messages sits unanswered, because pity has a way of blinding you to blessings. I will take a season of challenge and turn it into a season of contempt, because while challenges are fertile ground for the glory of God, they are equally fertile ground for entitlement. I will slip into thinking this world is home, because one of the great battles for our faith lies in the moments we think earth can be turned into Heaven if this one thing could just happen for us.

And in the end, the mostly me mindset will leave me with, well, just me. In the real, raw moments of life, times I want to mourn or times I want to celebrate, I’m pretty terrible company for myself.

But when it’s all Jesus, y’all, the hope abounds. Anything good turns into a chance for genuine praise, and anything hard turns into a chance for genuine faith. When it’s all Jesus, I see every little thing as an opportunity for the gospel to be shared more, known more, and lived more. When it’s all Jesus, I know that I don’t take one breath outside of what is a gift from him, and my posture of gratitude changes completely. The work of my hands, the words from my mouth, everything I do becomes that response to what he has done for me.

I cannot heal my son, tend well to my marriage, craft words worth reading, love my friends, understand scripture, work for justice, or do anything apart from the provision of God. I can pray for those things, and certainly give them all the effort I have. But I never want to forget that, in the end, my best is merely offering a colored pencil drawing of the earth to the Father who actually created it.

Apart from me, you can do nothing. Words that I used to qualify are now the most freeing, hopeful promise of my life. Jesus is our confidence, and his sufficiency never changes even though our circumstances always do. And isn’t that the best news you’ve ever heard?

reckoning

Y’all know I’m a sucker for a good story. I love a beginning that engages me; a middle that is suspenseful, painful, hopeful and all the things that real life is; and an ending that is meaningful—not necessarily happy, as there can be plenty of meaning found in places one might never call happy—but closure that I can live with in light of who the characters really are and the kind of future I can imagine for them.

I think everyone loves a good story. In many ways, our lives are a played out narrative of what we believe about ourselves and the world we live in.

This story, our story, is a story about reckoning.

Reckoning is a strange thing. To learn something, discover something, accept something, it divides your life into two distinct pieces: before the reckoning, and after the reckoning. Last week our family, in many ways, reckoned with something we had suspected, maybe even feared, for many months. Our little guy, two years old and full of goodness in every way, was put in a really big category that he’ll spend his life, one way or another, defined by.

The honest truth is that I am relieved. For many months we have been waiting, watching, treating this precious boy more like a research project than a child, and it’s been exhausting. When you are wondering if you are looking at a developmental delay versus a developmental disorder, everything, everything goes in to a score column for one or the other. Every good day, every smile with good eye contact, every time he looks up when you call his name, every new word, all of it putting points into the he’ll be fine category. And then the humming, the awful sound of his head against a door, the babbles coming from his mouth trying to form words but just can’t, the vocabulary lost, the recent weeks of regression, all of it tallying in the column that we don't want to look at. And yet, we have to.

We don’t have a specific label, or an official diagnosis, or a doctor or therapist telling us what our sweet boy will and will not be able to do as he grows. None of those things feel important right now, and I don’t know if or when they will. What we do have is a collection of discussions with a lot of people and professionals who care about this boy, using the words we have been holding at a distance and gently encouraging us to lean in to them. We have learned in the last few months that social communicative disorders are categorized as a spectrum because, well, that is truly what they look like when each precious soul fighting one is lined up. We’ve got a smart, sweet little man who has a ton of strengths and some significant struggles, and we are working through each one as they emerge. But we have so much more to learn. So much. We’ve ordered the books and scheduled the meetings and learned that when God tells us to ask him each day for what we need to get through just that day, we have to truly believe in enough for that day.

But let’s get back to the story about reckoning, because that’s the really good part.

When we realized that God was going to be asking something very hard of us as parents (and he asks hard things of everyone), we had to get real clear about who we believe He is. CJ Mahaney once said that, “You need your best theology in your darkest hours.” And that was certainly true for us. But if there is anything I can say without a doubt God has been teaching my husband and me over the last year it is that his character is unfathomable, holy, and good. He has been preparing us for this in ways we could not have imagined even six months ago. We never questioned if God loved us, or if he loved our little boy, because we know the cross answers that without a doubt. We also know that there is nothing God allows that he cannot use for his glory, even the special needs of children—maybe especially the special needs of children. And we haven’t had to wrestle at all with “why” because we know “Who” and believe in the story He has been writing since he separated the dark from the light. He has been so good to us to lift our eyes off of our circumstances and let them land on Him, on the one who did not spare his own Son but gave him up for us.

One needs only to spend a short time in scripture to know that it is a story of redeemed suffering. Joseph, Abraham, Job, Jeremiah, the bleeding woman, Jesus, Paul, and hundreds of others held together by their hope of future glory. No matter what brings suffering on, all of it is covered by the blood of Jesus; every single moment of longing for heaven was answered on the cross, and we get to cling to Him as we wait for the glory that is to be revealed to us—what a privilege.

And while reckoning does bring about a certain amount of, let’s call it comfortable acceptance, it certainly doesn’t make this easy. In fact, I am still a hot mess as I write this. There are a handful of people who have had to quite literally wipe tears from eyes in the last two weeks, and I've been keeping a whole crew of friends at an arm's length because I'm not sure what to say. My husband and I sat in the office in our home the other night and asked questions of one another that no parent wants to think about; questions about the future, questions about school and adolescence and all the what ifs that will kill you if you let them take over. We are not confident in much; but we are confident that we cannot do this apart from total dependence on God. We simply do not know what comes next, only what comes today. But since tomorrow has enough worries of its own, we’re doing our best to camp here and remember the daily bread.

I wrote before about the peace I have that this story has a perfect start, and will have a perfect ending. I still believe that to my bones. Right now we are in that middle, living the suspenseful, painful, and hopeful moments that real life is; waiting for an ending that is meaningful—not necessarily happy in this world, as there can be plenty of meaning found in places one would never call happy—but the closure we long for in light of who God is and the kind of future he has prepared for us.

And as we wait, we get to raise the absolute sweetest boy on earth. I mentioned that in one way or another he will be defined by this struggle, and he will, but we are praying boldly that he defies it in the process.  I hope you all get to meet him one day; he’ll melt your heart.

“In the path of your judgments, O Lord, we wait for you; your name and remembrance are the desire of our soul.” Isaiah 26:8