when I am longing and thankful. 

Last year, Thanksgiving Day, Gabriel was in the middle of serial casting. I was battling severe anxiety over his upcoming surgery, fear that gripped my heart and soul in a way I had never experienced. I was driving to Shriner’s weekly, rattled by the repetition, four terrible nights of sleep while he adjusted, three more normal, new casts, repeat. Gabriel’s feet were not moving independently, no reflexes present. I was concerned, but believing, so confident that the Lord was near to him, near to me.

I was so hopeful that next year, today, would look so different, feel so different.

My heart hoped, believed, surely, it told me, surely by then we will be in a phase of receiving information about Gabriel that is positive, normative, progressive in the way of moving feet and checking off milestones, not in the way of degeneration, in the way of Gabriel himself progressing, rather than his condition threatening to progress.

It is startling how little has changed.

I am once again anticipating Gabriel’s surgery. I am battling fear of anesthesia, struggling with anger over inconsistent nights of sleep as he changes from casts to braces to pressure sores to braces to casts again after surgery. I am tired. I am driving so much. I am staring at little feet and begging them to move; they do not respond. I am unsure of the future. I am waiting. I am sad. I am still in shock, really, in many ways.

And yet, also like last year, I find these feelings, these temptations and challenges and repetitive shocks to my system not to be exclusive of gratitude, they are not at odds with one another, and I’m not sure that is something that can be described, though I’ve sat here at this keyboard to try my best.

I am still longing for another way, take this cup, Father, won’t you?, but I do not think another way is coming, and I do not think that renders me faithless. I appeal to Him continually, like a lawyer in a courtroom, reviewing definitions, reminding Him of the way He has revealed Himself, of the rhythm He has set into the world. You are good, remember? You give your children good gifts? They ask for bread and you do not give stones. You are loving. You are kind. You are not far off, but where are You? You are able, but You are not giving ability. You are Healer, but You are not healing. You are Restorer, but You are not restoring.

You are not Who I thought You were.

That’s really the truth of the matter, truth so raw and resonant within me that it echoes, deafening. He’s not Who I thought He was. I never would have said He was predictable, but I thought He was. I never would have said He owed me blessings, but I thought He did. I never would have said He was contained, limited, bound in His responses to my obedience or lack thereof, my faith or absence of it, but I thought He was. Deep, subconscious, underlying, warring with the grace I held so dear, I was so very used to my own goodness, my own obedience and proclivity toward righteousness, a penchant Pharisaical far more often than I would like to admit, a norm so engrained that I believed it was a tool I could wield, a bargaining chip. This was in a way all subconscious, occasionally surfacing only to be suppressed, dismissed as a random thought, inconsistent with my “real” way of thinking, though it wasn’t.

This is, perhaps, the most bizarre Thanksgiving post one could write (though last year’s was not exactly traditional either). And it feels very unfinished, perhaps just the beginning of something, of patterns to be explored, of the reasons why I could be so rocked by all of this yet still believe, the reasons why I must admit now that I doubt very deeply, that I do not understand God in the way I once thought I did, but I still cling to Him, I still love Him, I still trust that He is good and that He will bring my heart along to an understanding of goodness that is deeper, richer, sweeter still.

I am certain that the categories I have had for Him will no longer suffice, they are a boat overpowered by crushing waves, drowning, and I tread water, watching it sink below the angry tide, wondering if I will too. But a piece of wood drifts by and I hold on, or maybe it holds me, and I’m waiting for the new boat to come. I haven’t seen it before, I don’t know what it looks like, I don’t know if I will ever have freedom from the longing for the old boat nagging at my heart, for the comforts of what I thought would be, the old definitions, the old ways of doing things, of thinking, of planning, of dreaming for my child. I don’t know how it is that I am even sure that a new boat is coming, but I am. And if there is anything at all that I am sure of, it is my need for it, it is my desperation for a solid deck on which to plant my feet, or maybe, more accurately, a cabin down below in which to lay, a ship that will not capsize under the wind and waves and storms unrelenting, the tumultuous waters that toss and soak and threaten to defeat.

So today, most simply, most shakily yet most fervently, I am thankful that a new boat is coming, that He gives me the faith to keep looking for its silhouette on the horizon. I am thankful that my heart does not cling to the hope of calm waters or a Captain who obeys my whims or manipulations, responsive to my paltry offerings of obedience, my filthy rags. I am thankful that the water has begun to wear some of the jagged edges off my soul, unearthing humility and questioning often stifled, silenced in the name of faith and obedience that has too often been whitewashed rather than purified.

The boat really has nothing at all to do with the Lord’s presence or lack of it, His goodness now or when the boat welcomes me inside. I think the boat is just a way for me to understand and take heart, it’s a way to feebly attempt to declare that I am not satisfied with how I see Him now, that I will not stand for continuing to be limited by my own small view of Him, my confusion over terms or despair over that which does not make sense. I will trust Him that someday I will see these waters differently. I will be so much more sure of Him than I am of their threats to sink me down, down, down. I will be thankful when the days of stronger faith come, and today, I will be thankful that I long for those days, that He holds my heart so tenderly and strongly, that He is giving me the desire of my heart that I voice to Him most often – I want to want You. Perhaps, if only in that obscure way, I am seeing just a bit more clearly what it means that He is good.

Let there be much Thanksgiving.

a life of waiting. 

Our life with Gabriel is a life of waiting.
Gabriel was supposed to have surgery tomorrow, but he had a fever Tuesday night-Friday and he still has a cough. His doctors are uncomfortable performing the surgery for at least 6 weeks after sickness, so we are waiting until January in order to allow for that time and celebrate the holidays. In these interim days, we will see how he does out of casts and in braces. If he does well, they may delay surgery even more. It’s another song in the lifelong dance of figuring out what is best for him.

Our life with Gabriel is a life of waiting. Because his condition is possibly, at times the indication is probably, degenerative, we don’t know which systems are or could be affected. Someday, Gabe could lose more motor neuron function. He could no longer have certain sensations, or we could find a bodily system in decline. There’s so little we know at this point. So, we have to make decisions about surgeries, anesthesia, medications, so many things, recognizing that Gabe could have a weaker or, someday, a declining respiratory system.

Our life with Gabriel is a life of waiting.

We are somewhat overwhelmed, but we are so very thankful for vigilant, thoughtful doctors. Many, in their kindness, their desire to understand, have asked how we feel. In a way, Eeyore-esque as it may sound, nothing feels different. Our life with Gabriel is a life of waiting. This may be a different waiting, but it’s all just waiting, it’s all just a continual reminder that we are not in control, that sovereignty isn’t safety, that protection isn’t insulation.

Our life with Gabriel is a life of waiting. All of life is a life of waiting. Our souls wait for the Lord and our minds wait for His wisdom and our ears wait for His voice, hearts wait for His comfort, spirits wait for His guidance.

Our life with Gabriel is a life of waiting, but our world before he entered it was filled with waiting too. Life with Jesus is a life of waiting. We wait for growth, we wait for renewal, we wait for Him to say, “enough!” and come rescue us. So I’m looking to Gabriel like an altar right now, like a memorial stone with me every day, reminding me that the waiting has always been here, will always be here, pulsating inside me, before Jesus returns. And perhaps we are some of the most fortunate ones, the ones with this blatant, visible reminder of the hope to come, of longing unfulfilled but not forever.

A life of waiting.

Come, Lord Jesus.