Maybe Happens

One thing that I have not shared much about is a very good and important thing that happened over the summer. Last summer had some real downers but those don’t subtract from our joy, and rejoicing, over a new victory.
Our second born had a rough time for a few years. A major accident at our church, febrile seizures, and getting very sick in Guatemala. When we returned home and began fostering, he embraced her fully as a toddler would, and his febrile seizures continued but thankfully he was not often running a fever. 9 months after her arrival, in the aftershocks of her sudden removal, some of his first sentences were heart wrenching. While we were fighting that battle, Asher began having many more seizures. Maybe stress and the emotional trauma of losing a baby like that did something, maybe it’s just coincidence. It was a very hard period. These were not just febrile seizures like they had thought and the medical bills started piling up.
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There are many things we don’t know about epilepsy, and that doctors and scientists don’t know. It is a scary diagnosis. Asher began treatment, and despite changing jobs and insurance twice, and becoming part of medical, was able to see the same pediatric neurologist his whole life. Because of the Affordable Care Act, we were able to have continuation of care and not be penalized for his epilepsy. I tried going to the first neurologist we were referred to on one of our new plans at the time. It was a truly terrible experience and I could not imagine working with them to sort out appointments, let alone solutions, as we found ourselves on this path.
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The first medication didn’t slow down the seizures. We gave it a good run but we saw the negative side effects and didn’t notice much relief. It was hard because he couldn’t tell us how it made him feel, and if he sensed anything different before or after his episodes. We slowly began a different medication–one which introducing too quickly to patients could end in fatality. Doctors said after more testing and overnights that they didn’t think he would outgrow epilepsy. I briefed babysitters and teachers and sunday school. I tried not to think about IEPs one day, or driving, or camp, or anything restricted on this bright eyed wonder.
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He did well on the new medication and we could breathe once we reached a therapeutic dose with no rash outbreak. We were still dealing with collections, payments, and billing reductions but we were not documenting seizures. Eventually the grip on the phone when separated loosened. The spans of playing out of eyesight lengthened. The months between UCLA neurology visits and that $14 parking garage grew. He was pro at taking his pills. We were pro at fighting, I mean working, with the local pharmacy to help them keep their inventory up and refills regular.
As Asher’s Kindergarten graduation plans were taking shape, and no ambulance was ever called, we had another checkup. It was a slow breakthrough. With epilepsy they call seizures emerging under medication “breakthrough,” which is the opposite of any headway a parent wants to make. I was shocked to hear of a real breakthrough: the dr thought we could try titrating down, off the medication, to test the epilepsy. Maybe he was outgrowing it. Maybe it was different than they had thought. It had been over a year. No delays. No jumps in dosage. Maybe the prayers, the hopes, barely spoken aloud for fear it would ruin our ability to walk the prescribed, long road ahead, were coming true.
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On my birthday, Asher took his last, now tiny dose of epilepsy medication. And there have been no breakthrough seizures during the months of transitioning off. His moods and energy seem to have panned out, from however the drugs affected his system, combined with the excited exhaustion of starting 1st grade. We don’t wonder if something is seizure, drug, or age/misbehavior/mood related now. It’s just C, a 5-year-old boy, learning. We are thrilled at his progress and health, for him, for us, and for the pharmacy on the corner. I don’t know when we can say he does not have epilepsy, when it will be far enough away that a glazed look doesn’t cause my 2nd take, but each day is closer to then.
To be sure, it has been a rough year on almost all accounts. Homes, literal and figurative, are burning down all around us. But this is quite the foil. We are so proud of this boy and his love and tenacity and incredibly excited that this is yet another new normal. This victory, this praise, deserves our tears, applause, and thanksgiving and I’m so glad to be able to share this today, in the midst of all the todayness that weighs heavy. We’ve learned so many lessons by his side. From the waiting, to the hurting, to the forgiving and the grieving, to the advocacy, to the pain of children’s hospitals, in which so many have stayed for far more time. We’ve learned to take things by the day, that anesthesiologists have their own groups, and nothing is for granted. We’ve seen how limited we are as parents, and how scary pre-existing conditions and medical bills can really, really be. And we’ve been encouraged to keep places of hope in our lives that defy reason, that may be hibernating, for an unexpected spring. Who knows, maybe your birthday is coming. Maybe the breakthrough is slow. Maybe because this maybe came true.
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Pancakes

Ironically, having a baby forced me into contemplation today. This almost never happens.

Lucas is sorting out his sleeping demons, which is really fun for us, and in a last ditch effort we went for a walk this morning. With each step I found myself able to pray for quiet, consecutive minutes, a luxury I used to ignore.

So many things facing us, aren’t there? Personal health. Court trials. Paperwork. Bills. Activist hearts, cluttered brains, booked calendars. Faith and fear. Life and death.

We ended up at a large cemetery, a block away. It had been years since I had been there. It’s a quiet walking area in the middle of our densely noised neighborhood. It’s also where we honored a student and friend who died unexpectedly in 2007. I found his resting place.

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I was so young and inexperienced with grief at the time. He had been my student the year before, and was in his freshman year of high school when “Pancakes” suddenly became very sick. The questions outlived the answers.

Today is his birthday. Today this young man would be 24.

My prayers turned to his family. I couldn’t believe the math, the date. This rock and this contemplative place, where so much grieving has taken place, reminded me that God has asked us to mourn. He has invited us to be a lamenting people who kept the faith, a grieving people who looked at the truth of their hearts and situations, not deny it. One of the main things God has been teaching me over the past 11 years is grief. I am still so young and inexperienced, I know. But experiences like losing Cesar and witnessing the pain in his family and the community have been formative and eye-opening.

Forced contemplation today reminded me that God is very, very big. The stretch of His reach and power are not dismissive to the list of needs I brought today; the true burden of those things inform my appreciation for His superior breadth. The grandeur of our problems and burdens, of the losses we face or carry, are enveloped in, and indeed inflate, our view of His greatness.

I felt that reassurance today, as I found myself at this grave, warmed by the sunlight, and the memories of this young man, on his birthday. I feel so lucky to learn grief with those who have become my neighbors and family, and want to give others the permission to name their own. I am encouraged by the reminder that God is larger than the scope of my concerns and inadequacies this week.

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It’s hard to breathe sometimes, isn’t it?

 

I can name 4 major crises my small circle is facing right now. This morning, in the midst of doing something very inconsequential, scrubbing the neglected corners of my kitchen floor, I found myself on my knees, which is not very inconsequential.

I cannot do much for these loved ones. I can give strong hugs, I can suggest ideas from my finite mind, I can feel–oh, I can feel–their sorrow and grief. But I cannot abbreviate their grief, end the illness, free the captive, raise the lifeless or infuse identity.

As I bent low, making a difference in the dirt, I used a basin older than me. It was my grandmother’s. A woman who is going to welcome her daughter soon in the heavenlies. A woman of faith and gentleness, servanthood and humility, that I rarely resemble. As I considered the hours she spent scrubbing, the moments she must have used this bowl, the small, calloused hands I remember that gripped so many young children’s palms in her own and cleaned so many spills, I felt connected to a lineage of people who endured, who believed, who saw the best in people.

The prayers of my grandmother live on, much like this enamel basin. It helped me to pray on the floor this morning, for the sorrow and trauma my loved ones are suffering, for the milieu of danger and suspicion and blame in our nation, for the strength to wait and be loving.

I don’t know how God endures the grief He must feel over His lost and hurting people. Over our refusal to reach out, our rejection of His citizenship, and our constant evaluation of one other in self-defense when all He has done has been for our belonging and to grow our grace. I don’t know how He faced this earth and said He would stay with us Always.

God the Son bent low and washed feet. It didn’t end cancer. It didn’t fix the betrayer’s heart. It didn’t save them from martyrdom.

All that is wrapped up in Christ’s basin and kneeling eludes me but today this occurs to me: He is with us at the lowest and messiest. This is my God–the One who serves, weeps, and gave up His breath so that even when it is so hard, we breathe on and we have someone to pray to who knows this pain.

I don’t feel any obligation to remain poised in the midst of today’s hurt. But I must stay prayerful. I must stay knelt at a humble basin, facing the dirt, remembering that though the air is thin, this is not the end. We come from a tradition and a Lord who embraced those margins. We are not unfamiliar with the dark corners of life and fallenness. And we are not conquered or calloused under their persistence. I reach deep into the water of faith at these times, and stay low to listen and to love. It is all there is to do.

We are not so separate.

My son has started drawing me “kind of like a pumpkin” and considering how difficult it was to get the milk from the bottom of the grocery cart this morning and, eventually, stand up again, I think I’m embracing the image.

It’s that time. When, though you want to save it up knowing a sieve of sleep is coming in the form of a live baby, rest is slippery and complicated. (At what point do the pillows become more of a nuisance than a relief…) When all the things that need to be sorted or planned or written down seem too tiring, so instead you waste energy searching for the perfect, stupid […insert baby product here…] ad nauseam. When (in my limited experience) people begin pointing a little and laughing a little at your convex mid-section and you just hope, HOPE, that you’re not showing any midriff.

We wonder what he will look like and how each of his brothers will embrace and challenge and give in and resist his arrival. We pray for a similarly smooth birth, and hope for that same nurse that was at the other sons, the same room as them, because wouldn’t that be fun, and for new and different eyes to see a new soul, a new person who stands apart from our other frameworks.

I also pray my stomach skin doesn’t end up mid-thigh length by the time this is all said and done.

The physical expectancy we witness in ourselves, in a 1st grader, in a preschooler, and in our community, because of this little son, is so helpful for nurturing a faith-expectancy in the bigger, more abstract places in which we long for change. The growing, the nearing, of a baby’s life–of so much that is certain but so much mystery–echoes, no, foreshadows, the next chapters we long to read elsewhere. For that one person’s freedom and self-confidence. For that new job. For the courage to enter a church. For the resolution to an injustice that has steamrolled our security, our savings, or our very family. For peace in a wandering, distant mind. For wholeness in a bankrupt marriage. For a friendship that is like the mountain air.

May the pregnancies we see offer spiritual meaning to our day. May the new cries, the new mess, the new skin of a baby whisper to us, lead us, forward in our prayers and hope. May we find our future, our next step, in the daily occurrences and observations that seem commonplace. We all carry the longings; we all have the sleepless nights of needs and worries. May something as simple as an awkwardly large pregnant woman or a squawking newborn babe indicate the holy, the next, and the coming in our own lives for our stories are shared. We are not so separate.

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How I Meet Sunday

In the latest parts of a day, and the earliest parts of the next, sometimes my thoughts catch up with me.

In the inky-bluest shadows of the never-dark Los Angeles night, I am alone and the scattered thoughts and pounding heart have free roam before the listening ear of a loving Father and a learning, wandering soul.

Tonight many noises accompany my rising.

The constant whirl of the freeway beside us. The helicopters’ relentless search overhead. The speakers from the other side of the street, sometimes sending a blur of words, sometimes of tones, that remind me of the mosque by our house in Nairobi–the one we used to take the littles to while Mom and Dad walked laps or I jogged for basketball. I remember a navy blue stroller with yellow and green. I almost forgot about that.

Tonight I sit in a room that I can still smell her in sometimes and I lay all the things before a Greatness I believe is there and before and beyond and with. Life has been like the helicopters; relentlessly searching out the plans I had, the places I thought were secure, and I am naked and poor, wretched and blind, before the glare. It has been another long week and I swear we are not crisis-centered people. The four of us have been sicker than we ever have been and we are all thinner and more humbled by our fragility and need for others as a result. The reality of Ryan’s work has hit hard, and we keep finding our youngest having had seizures and the diagnosis and solutions aren’t keeping pace. Yes, there are many thoughts catching up to me.

Since she unwillingly left, it has been long enough to conceive and carry and then hold a new child, home. But we are still waiting to know what was conceived on that night other than loss. We are still looking for a heartbeat of something new and breathing to help give the grief a gloss–not a cover, but a seal. I have not posted more lately about todays as though yesterdays but I have written a story that must wait to be told, to fill in some gaps. I don’t have the story I would like because still there are no conclusions. I pray for her and I ask, what do you want Lord? What does love call us to here? What do we need to surrender?

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My mind shifts to those outside of this empty room with the new paint. The friend who has spent the past week in the hospital, while my family was emptying our guts sick at home, having every part of his gut examined and tested, praying for life and a break from the pain. The family that surrounds him that are the type of people you don’t want anything or anyone to hurt or hold back because they help all those around them hurt less and move forward. Some ruling out has been offered but peace is slippery in the waiting room. And I am transported to this time last year, when our loved one was spending her last weeks on earth with her loved ones, next door. So much has changed since then; there has been much grace but still, the losses are heavy. I pray for the unknowns of the one family of saints, their strength and their care and I pray for the knowns, the finality, that still dawns on the other family of saints–and their strength and their care. 

I consider the hearts of my sons. One is needing me more instead of less–and everything I may have guessed about parenting before is brought into question by fuzzy layers of side-effects, grief, epilepsy, and a 3-year-old personality I don’t completely understand. Each day is a mystery and we are waiting for our own answers for him. One has been so strong through so much, so steady and predictable. But I see his strength growing in some directions that will pen him in, that will close off options that are fully his in a life of grace. And I want to help him avoid the wrecking ball of the future–the decontruction I know because I do it, with Help, over and over. And I pray for grace. For strength, for tenderness, for loving hearts. For rescue from the barrage on his mind and protection in the war over his heart.

The accounts of a visit to Iraq and About sections on adventurers and non-profit starters and writers from afar move me in between apple juice and bed changing and squabbles over Legos. I wonder at those women, and my nearness of heart to them but my seemingly infinite distance of proximity. Have I changed? Did I miss something, do something wrong? Should I be doing something else? These seem like indulgent thoughts this night of shadowy watercolors. No, maybe, I don’t know– I know that I thought I was mightier at some point than I am. I can admit that I thought I would be in charge of more things by now while I’m in fact finding out I’m in charge of fewer than ever. And so I pray. Tired, quiet, with all the night noises my chorus, I pray. You are mightier than the worst nightmare and the biggest success. These questions are too daunting. Show your mighty acts, your justice rivers, your mercy storms. Reassure my frenetic heart as the myths dissolve away. Be close to the warriors in these conflicts; those who are able to start and renew out there.

And I pray for the other women in my life. Who feel alone. Who are vulnerable to attack. Who are restless and bored and strong and exhausted all at the same time. Who are yearning for answers and needing a searchlight to show a new route.

And this continues. I wake and I wake to the storms and this is how I meet Sunday–feeble, frustrated and befriended. By not just a god, but a Shepherd. Not just a counselor, but a Maker.

And this is acceptable.

I find that for someone who does not have journals of conversations with God but piles of lists and academic notes, it can be difficult to pray. It is difficult to pray when the last year has held so many unanswered questions and hopes, you half expect visible debris to fall from the ceiling when you do. It’s difficult for me to pray, alone, unless my heart and mind have so much going on that their caffeine of need overpowers my endless fatigue and distractions.

Tonight, last week, I could not do anything about anything. But this new week, I’m starting with what I can. And it’s all I can more often than not. It’s not my favorite, and it’s not much to write about, but I learned more of true might tonight in my weak state–in the mess of all the pieces that fell out of my head and spilled from my heart, and scattered all across this space of loss, turned holy.

In the winging of this waiting, in the haze of this night, I can only invite Help and rest until morning.

Peace

I’m sure she would have liked to know the part about the stable.

Giving birth in the company of animals, no matter how primitive your normal life, does not shout “favored one” or “his kingdom will have no end.” It did not confirm the calling on her life and body and probably wasn’t the set up to the Messiah and a new reputation that she was anticipating. The darkness of the night must have been punctuated by great disappointment. By heavy question marks that asked, is there a mistake? Is this truly happening?

Still, somehow, that is the story. That is the nativity, the pageant, the beginning.

So many times this past year, I have not wanted the story I was given or a part of. I have cried and prayed beside people whose stories were not panning out. I have watched plot twists that left people in deep nighttime, susceptible to loneliness and despair. In my own small world, 2013 has included more than its share of stables and instability.

It is for us, then, that dawn breaks.

We are the ones with our eyes fixed on the sky, who know that our greatest fears are not always unfounded and are peering through them to find a new star. We know the allure of apathy and absenteeism and can also testify to that pump of energy and faith that is a brief gift, completely unmanufactured by our own will or effort–simply a lifeline until the next calm can be found. We are the ones who grip another’s hand harder than we have had to before, who have come to readily admit our limitations because the lie of carrying them alone and quietly has been shattered by reality. We have come to the end of ourselves and found that He embraces that journey and frees us to our need. We are the ones less convinced than ever of worldly frameworks of health and happiness.

Just as there was no place for them, the immaculate conception, in the inn, things have probably passed that we had no room for–in our psyche, our emotional muscles, our schedules, our faith. We had no constructs to get through the time with, to lead us in the nights. We look up with empty hands, feeling unsheltered and oh so tired.

I am praying, leaning, holding my breath–that this advent would welcome the dawn of redeeming grace we sing about and for which we search. In the silent nights that haunt us, in the stables of disappointment. Not of a deus ex machine hero tale that dismisses what has happened but a step in each narrative towards resolution. A creeping towards the Prince of Peace. A filter, a blanket, over and under and through the darkness.

That would be peace. That would be a small way to add an ornament to the assorted memories of the year, a bridge to the unfinished ballads. That is the Christmas we need–not high-gloss but deep footing. We need to know that “those who dwelt in deep, intense darkness, on them the light shone”–in exile, in disobedience, in famine, in suffering. In birth and new life.

…because of the tender mercy of our God, whereby the sunrise shall visit us…

to give light to those who sit in darkness and in the shadow of death, 

to guide our feet into the way of peace.

Luke 1:78-79