the next chapter.

I have been slow to share details about Gabriel’s upcoming neurological test. Even explaining it to family face to face has been awkward and jumbled, like the words are begging me to let them just stay inside, because maybe if I don’t speak them they won’t come true. But they will, and the only thing I can do now is ask God to impress upon my heart that He goes before, that Tuesday and tests and tears belong to him.

Gabriel’s EMG and Nerve Conduction Study will be very unpleasant for him. They will be painful and not over nearly as quickly as I would like for them to be. They will be a microcosm of this journey, friends, this long and hard journey. And for days now, maybe weeks, I’ve known it was time to ask for something new from each of you who have cared for us so deeply, from each of you who have begged God to let this cup pass and been the very hands and feet of Christ through meals and gift cards and babysitting and so much more. I’m humble before you now, nearly trembling as I ask this, partially because I’m still in shock from our circumstances and partially because what I need to request is so much to ask. But I have to, because, silly/freaky/crazy as it may sound, I’m confident the Spirit is telling me to.

So, in what I believe is obedience, I’m telling you now that if there’s anything you can do for us, it’s to grab our hands and choose to understand with us that this is just the beginning of our new reality, of Gabriel’s story that isn’t the one we thought would be written or that we would choose to write. We want you to keep praying for healing, we really do. But we also need you to help us to accept however God chooses to make His presence known in this trial, and to know that we believe He is telling us that these are yet the early days of Gabriel’s physical struggles, that, while He could choose to heal at any moment, He is telling us now to be strong and courageous and ready to struggle long. If God chooses not to restore Gabriel’s physical abilities fully during these fleeting earthly days, He is still good. If all the strange, difficult things our family has been through were the 5k races preparing us for this marathon, we need you to run alongside us for these 26 hard miles, to embrace the race and not resist it, to preach these words I’m writing now back to us when our hearts grow weary and faint.

Oh how I hope my message is clear, how I hope you all know how much you mean to us and strengthen us and encourage us, how deeply we have treasured your prayers for healing and renewal. We are in need of you. We are people who are used to being strong and capable and the first to help; we are admitting weakness and insufficiency and need. Accept God’s hand with us, friends. Help us press into transition from a perception of short-term crisis to long-term faithfulness, from our planned trip to Italy to the Beauty of Holland. We see in a mirror so dimly now, and we are every day a step closer to beholding His face. Will you help us take those steps with faith, not begrudgingly or slowly, but confidently and with open hearts? Help us believe that He is here, that all of the promises of God find their Yes in Jesus.

I have never been so aware that His thoughts are higher than our thoughts, or that His ways are higher than our ways. That He upholds and strengthens and that He can do anything but may not do the thing we ask and that He works all things together for the good of those who love Him. What I want now is to see the Lord’s goodness in ways I could not imagine, to trust that our labor on Gabriel’s behalf, that Gabriel’s pain and frustration and limitation, are not in vain. We are so very blessed to have so many people who love Jesus partnering with us, to be helped in our unbelief by the Scripture spoken from your mouths and the refreshment you have offered us.

I almost always refer to Gabriel as “Gabe,” but today I need the reminder of what “Gabriel” means – the Lord is my strength. He is Gabriel’s strength, the One who upholds him, the One who writes his story and does not have to disclose it to his mother because He holds Gabriel in the palm of His hand, because Jared and I are not Gabriel’s ultimate protectors. We trust now that God will continue to show more of Himself to all of us through Gabriel’s life, and we are honored to behold God’s glory displayed alongside each of you.

the january trees.

Screen Shot 2015-01-14 at 3.48.11 PM

The veil of exhaustion is thick upon me today.

I consider it, and it makes sense. Thursday was The Day Everything Changed, a new beginning, a fresh grief, a higher call, a deeper joy. Today is Wednesday, so in a way, it is the end of the week that began that heavy day. It’s like my body knows this somehow, like it senses that after 6 days of hard it is time for 1 of slow, easy, calm, rest. I am hungry for a weekend that isn’t likely to come in the form I would choose. And it definitely isn’t coming right now, in this moment, on a Wednesday afternoon at 3pm, smack dab in the middle of the week when a preschooler wakes early from his rest and the baby’s nap schedule is opposite his.

So, I let the oldest watch a movie while the youngest dreams; the coffee percolates and my heart brews alongside it, pressing the grounds of this weighty season through the filter of what I know to be true, what I know of God, what I believe of the world and myself and good. The pressing is slow and strong, the heat turned up high. And I sense that what will come from it will be both bitter and sweet, heavy and heartening, not unlike the mug-full I just poured.

I couldn’t quite bear to remove every touch of Christmas from our home when the new year came. I resonated with Owen a bit more than I may care to admit when he saw our tree stripped bare of ornaments, packed away till the season returns. He hung his head with both sincerity and flair, tearfully exclaiming, “oh no!”

In solidarity with him, and aware that the year to come may hold a greater need for resolute faith than ever before, I kept two miniature trees atop our mantel, calling them “the January trees,” as though a name could transform them into being seasonally appropriate. The trees are decorated with cards from Naptime Diaries advent calendar, and the central most card is from Christmas Day. “HE IS HERE,” it reads. I look at it several times a day, like the Israelites to the bronze serpent (Numbers 21), desperate for healing and sure of the only One who can give it. But the healing I’m craving isn’t physical per se, not even for Gabriel, though I would give my legs for his if given the chance. Those basic instincts run deep and true, the desire for healthy children, for their opportunities and freedom and the ability to run unhindered and silly and agile. But, by grace, beneath them is the certainty that the healing every person under our roof needs more than anything else is the healing of soul, the working out of salvation in us, the freely received but hard lived truth of the gospel burrowed deeply into us. He is here, my heart testifies, He has not left or forsaken us. How now shall we live?

I’m learning that a heart can feel both heavy and free. The January trees remind me of this as they sit atop that mantel, next to a whimsy wooden “JOY” that sits like a mantra made visible over our home. They remind me that, when considering a word for the year, I immediately chose “rooted,” the deeper place, the firmer ground. The trees preach truth in their branches and I pray that their roots grow deep through our walls and into our foundation, unable to be extracted, limbs unshakable. I want what comes forth from me to be like those trees, wild and strong, free and secure, certain of the undying grip of their roots.

This year calls for so much. For grieving the loss or delay of dreams, some I knew I had and some I didn’t, for advocating on behalf of a child entirely dependent on me, for food, for ability, for love. For questioning and believing and living a life that some may call brave and inspiring but I know simply as a journey toward obedience by a traveler ever-reliant on grace. For letting the Maker lift up my head so I can see the beauty from ashes, the truth that hangs in the January trees and never changes.

He is the root; He is the one who roots us. And buds of hope, of belief, sprout green.

the wait and the weight.

Gabriel’s feet are progressing very well. I can hardly believe how much they have changed in just a month’s time. The appointments are miserable but quick, and he, by God’s grace, sleeps soundly in the car on the long ride home. The evening is usually unpleasant, the few days following difficult as well. This time has been much better, though, as if Gabriel knows he’s progressing and that gives him the encouragement he needs to endure.

gabe collage

My conversations with the doctor were relatively light in topic for the first few appointments. She is generous in her storytelling and smiles, working hard to keep me engaged in pleasantries so I don’t get lost in Gabriel’s obvious discomfort. She is a mother of three and I’m thankful for her maternal touch, funny anecdotes, chipper voice. At the last appointment, however, her tone changed a bit. She told me, carefully and succinctly, that Gabriel is yet to show a reflex in his feet that she expected to see by now. “He won’t wiggle his toes or move his feet. I can tell he feels me touching them because he moves his legs, but I don’t know if he can move his toes or feet. We need to get an ultrasound of his spine to check for fatty tissue that could be blocking his nerves. If the ultrasound doesn’t reveal anything, we will need to get an MRI. But let’s start with the ultrasound, because the MRI requires general anesthesia.”

Spine. It took every ounce of strength inside me to keep listening after that word.

Anesthesia. Again. He is already having surgery when he is three months old on his Achilles tendons. Anesthesia twice as an infant? Most adults I know haven’t experienced that. Suddenly the risk waivers risk that I’ve so cavalierly signed (without reading) for my own procedures seem to wave before me like giant red flags.

Gabriel’s ultrasound was planned for last Friday until the hospital called to reschedule it. “An error in the system, the right technician won’t be here on Friday,” they explained. In order to accommodate our schedule due to his next casting appointment, we have to wait until Thursday to have the ultrasound conducted, perhaps another week after that before we hear the results.

And there are moments when all I can think about is the wait. And the weight.

The wait stretches me thin and the weight stifles me spent and the two combined make a deep breath nearly impossible to come by. The wait for tests, for answers, for plans, for diagnosis is so familiar in the worst way, like a leaky faucet that drips water once again after endless attempts to repair. The weight of what we could learn camps staunchly in a corner of my brain, edging always toward the center, toward the forefront, forcing me to fight against its tentacles of fear. The answer could be a mountain, it could be a boulder, it could be a balloon that floats away at Gabriel’s next appointment if the clubfoot treatment leads the issue to self-correct. There is no point in fretting during the wait, or worrying over the weight, because we don’t know what the outcome will be. And even if we did, even when we do, I’ve never known a resolution conjured up by fret or worry.

But that doesn’t make it easy.

I’m fighting like a madwoman to keep all the hypotheticals at bay, standing on the shore of my mind with shield in hand to protect myself against the crashing waves of what could be and what I would do if it were so and what our life could be like if nightmares come true.

Owen runs through the entryway for the 80th time in a day and I beg God to let his brother join him someday. I look at the verse hanging in Gabriel’s room, “The Lord will be your confidence, and will keep your foot from being caught,” and I wonder if that will be physically true for Gabriel this side of eternity. I wonder if all of this will evaporate at next week’s appointment, or if the wait and weight are here to stay a while longer. I wonder if I’ll be a mother forced to learn what it is to watch a child suffer beyond friendship strains and homework frustrations and athletic disappointments. I wonder how I got here and if I’m strong enough to keep standing if my son can’t.

Some may say that it’s silly for me to ask all these questions right now. We don’t know what will happen, after all, this could all just go away. It’s true. But it’s also true that the questions are here today, that they threaten to overcome me and require me to call on every ounce of strength the Holy Spirit can provide in order to keep my thoughts captive, to echo “not my will, but Yours.” Regardless of the outcome, I want to be able to look back and know that God gave me the power to cling to Him during the wait and hide in Him under the weight, that I believed my spirit could not be torn or crushed because He was holding it safe. I want to remember this time as an acknowledgment of my own fragility and a recognition of His unshakable power that kept me in one piece.

This won’t be the last hard thing, of that I’m sure. I want to be in the habit of trusting Him, the habit of letting myself ask and question and learn what it is to believe when doubt shouts loud. The wait and the weight actually seem much bigger when I seek to ignore them; the first step in harnessing them is to acknowledge that they exist, that they are real, that God is bigger. He beckons me out onto the water, and I’m admitting to Him and to myself that it’s not instinctive to walk on waves. I need practice, and He is gracious enough to give it, even when the shallower parts of me would prefer He didn’t.

When all is said and done, the only thing there is left to do is to lock eyes with Him, to be the person I said I would be in my first ever post on this blog – the kind of person who wrestles with the Man and will not let go without a blessing. The wait for eternity and the weight of glory are far too valuable for me to ignore, far too significant for me to despise, even when the current wait and weight seek to make me believe that they are greater, that they have a stronger hold over me.

I am holding on; I am being held.

And the wait and the weight lose their grip.

a jumble of an update.

i’ve been thinking about how to write this post for 6 weeks and i’m still totally unsure on how to say what i want to say. this post will not rank very highly in the eloquence category, so consider yourselves warned. also, if words like “uterus” make you feel squeamish, go ahead and click over to the next blog post in your reader. 

i’ll start with a little background fact: the Perrys do not have fun 20-week sonograms. at Owen’s, our emotions took a plummet as we went immediately from the thrilling moment of having his gender written down for us, to hearing that my uterus had grown an amniotic band that could cause disfigurement should Owen interact with it, and that Owen had spots on his heart and brain. i’ll never forget how i felt in that room, like the blood was draining out of me, like i couldn’t protect a being though it be fully enclosed by my own body. we had monthly sonograms after that, each showing that Owen seemed to be doing well, but toward the end my ability to sustain him was dwindling. fluid levels lowering, placenta calcifying, movement lessening, he had to be removed from me 3 weeks early by emergency c-section. by God’s grace, the heart and brain spots proved to be nothing, and he never interfered with the band, which turned out to be attached to a uterine septum, a “heart-shaped uterus,” a division. 

a touch over two years later, we giddily walked into the sonogram for baby #2. once again, we asked that the gender be written down for us to open later, and we were thrilled when it was easily deduced. and then came the plummet,

“Well, almost everything looks good, but this baby has club feet. They could have been caused by him kicking against your uterine septum.”

in case any of you are under the false impression that my initial reaction to everything is “well Praise the Lord,” i’ll just inform you that my thoughts in the moment after the doctor spoke were well outside the range of blog post appropriate.

the doctor went on to explain that he didn’t see any other issues at this point, that the feet were likely an isolated incident, as most cases of clubfoot are. clubfoot is a birth defect that occurs in 1 in 1000 births, 40% of which show the defect in both feet. clubfoot can also be a sign of spina bifida or cerebral palsy. no reason to think the baby has either of those conditions at this point, the doctor told us, let’s do a follow up in six weeks.

let’s go to Antigua and never come back, I thought. 

in the weeks since that appointment, we have traveled to Antigua (that will get a “Praise the Lord” from me), hosted the first fosters, and had a follow-up sonogram. i have questioned why we have experienced such a string of strange, not life-threatening but not minor health issues, and why my body seems intent on causing the lives within it to struggle. the follow-up sonogram was consistent with the first, showing clubfoot present in both feet but no markers of a larger issue. my thoughts are still working themselves out.

i am a mix of thankful, frustrated, incredulous, fierce, annoyed, exhausted and ready. in other words, i’m a mother. i’m struggling, i’m processing. i’m learning and preparing; that’s what mothers do. 

from what we have gathered, Gabriel will need to see a Pediatric Orthopedist within the first week or two after his birth. at that appointment, he will have his legs stretched and casted, and we will return for new casts every week for several weeks. once casting is completed, he will be fitted for boots with braces and a bar that goes between his feet, most likely to be worn 23 hours a day for a few months, then fewer and fewer hours until he wears it just at nighttime, probably until around age 4. the treatment is extremely effective and, while he will probably walk later than most children, he is likely to gain full usage of his legs and feet over time. for that, we are very thankful. 

while we are extremely grateful at the thought of the outcome, we are also recognizing that the process is no small thing. all the “baby stuff” that can come with it’s own set of joys and frustrations, trial and error, like nursing, bathing, babywearing, clothing and playing, has to be thought through a little differently this time around. nursery workers and babysitters will need extra information. sleep scheduling will have to take a backseat to weekly trips to Houston for casting and extra soothing on uncomfortable days. blankets and pillows will be constant companions for supporting awkward limbs. it’s not unmanageable, it’s not nearly as hard as it could be, and it’s also not nothing. i can be so quick to downplay my hardships in comparison to those of others, and i don’t necessarily plan on trading in that quality anytime soon. but this time around, i’m at least letting other people know what’s going on. i’m at least saying that i have completely bought into the “it takes a village” philosophy for raising children, and if someone wants to help, i’ll be saying yes. 

we would love prayers for finding the right doctor, Owen’s adjustment to a new baby who will require extra attention, wise financial planning as we prepare for a new onslaught of medical bills and my mental and emotional stability as we prepare to climb a new mountain. 

one thing is for sure, our lives are never boring. they never fail to give opportunity to let our true colors show, to ask us if we will choose Christ and joy or self-pity and apathy. i’m praying that by choosing to struggle through my feelings and prepare for this baby with all the foresight and tenacity i can, that i’m choosing Christ. He’s never asked me to shut down those screams inside that say but this isn’t right, to ignore the mothering instinct that is sickened by the thought of her child in pain. i’m hacking away at the lies and accusations that attempt to keep me from taking those appeals to Him. i’m reminding myself that the desire for wholeness, the desire for health and peace and good and right comes from Him. He is the only One who can show me how to live in this in between, in this world where I know of His always goodness yet live inside the nowhere near perfect. 

a friend once gave me a Bible with Proverbs 3:26 underlined in it. “The Lord will be your confidence, and will keep your foot from being caught.” i never thought that verse would have such a literal meaning to me. it’s become my verse to pray for Gabriel and myself together. Gabriel, whose name means “The Lord is my Strength.”

strength and confidence. uncaught feet. let’s add those to the prayer list, too.