a life of waiting. 

Our Expert Option 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 expert option trading 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 ExpertOption 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. 

what really happened.

If you follow me on Facebook, then you know what a wild 24 hours it has been. Last night, I thought it would be a fun little experiment to invite some others to join me in contributing a few items to our church’s soon to be opened foster pantry, a place where families can get the items they need in those few hours between the placement call and a child or children arriving. I was floored, I suppose I still am, by the outpouring of support. Who knew the Spirit could claim virtual ground and call it holy? This is what the Lord gathered from among His people in a day’s time:
11 Stuffed Animals

10 Jesus Storybook Bibles

10 pacifiers 

6 travel bags

5 binders/sets of sheet protectors for medical documents 

4 bouncy seats

4 fuzzy cover children’s Bibles 

2 single strollers

2 double strollers

2 car seats

2 booster seats

2 baby wraps

2 highchairs

2 pack n plays

2 sets of bottles 

$200 for diapers and wipes

$100 for necessities and toiletries 

Hallelujah. Amen. Glad and generous hearts.

In many ways, I’m still speechless at the thought of what occurred, but one part is crystal clear to me, urgent in its message. I want each of you who have prayed for our family, who have lifted Gabe up and strengthened our tired hearts and grasped our hands in our grief…I want you to know that the love, food, encouragement, lawn care, notes, gift cards, chalk messages and more that have been poured out on our family were the catalyst that made the foster pantry drive a reality

You see, less than a week ago I could barely even look at my phone. My brain was so overwhelmed and tired, just reading an email gave me a headache. I couldn’t engage social media, couldn’t ponder the articles, or engage the discussions. I had no space for imagination. I couldn’t pull my mind away from the difficulty of our story, from the fears and uncertainty abounding. But then you all happened. 

And you filled us up not just to surviving but to the hope of thriving. And my mind had the freedom to dream and create, and along came the idea to collaboratively add a car seat or two to the pantry collection (oh me of little faith). 

I want you to know that not just foster children will be blessed, but even my children are the better for all of this – for the constant visuals of what it is to serve and be served, for a mom who can smile and laugh because she’s confident she is cared for, for the growing awareness of the interwoven cycle that is life in the Body of Christ – pouring out, pouring in, suffering, rejoicing, sometimes all of it at once. 

It’s been six days since we received the news about Gabe, since you all mobilized into action and showed us the hands and feet of Christ. I want you to know that I recognize your role, that your love for Gabe has spilled over into love for the orphan and nothing could thrill my heart more. Thank you for loving us so mightily that the amount could not absorbed the four people in our home. The force of it propelled us forward, propelled love forward, spilling over to touch the lives of dozens, hundreds perhaps. 

Tonight, the evening before the one week anniversary of learning so much that explains so little, I am hard pressed to find room in my heart for anything but gratitude. And while the anger and grief and sadness will surely swell once more, the memory of a week like this, a week filled up and pouring over, will never be forgotten, will sustain when the darkness looms long. You have been agents of His light, His love, His peace. We are able to be us, to find wholeness, because of His outpouring through you. And so tonight, we watch in wonder, soaking up all He has done and continues to do. And we rejoice. 

(Anyone still interested in donating to the pantry can Venmo me at Abby-Perry or PayPal abbyjoyperry@gmail.com. Email for mailing address for checks. Funds will go toward most needed items at the time, likely diapers, wipes, etc.)

heartbreak & hope [an update on Gabriel]. 

This weekend, family and precious friends took it upon themselves to usher refreshment into my life in ways I frankly didn’t think were possible. They poured out love and joy and blessing of all kinds on me, easing my pain, participating in it through their acknowledgment of it. Because of them, I was able to divert my attention from the heartbreak of Friday’s appointments, if just for a moment, and my heart is still, in many ways, sustained by their kindness. Strengthened by them, we are ready to share the news we received less than 72 hours ago, though it somehow feels both like the blow was just dealt yet a year has passed simultaneously.

Gabriel’s genetic results show two mutations in gene AARS and one mutation of the MAP1B gene. The doctors think the AARS mutations are the likely causes of what his body is experiencing. He’s, in a way, still in an unknown, “league of his own” scenario. They think he has distal hereditary motor neuropathy type II of the AARS gene, which is a cousin of Charcot-Marie-Tooth (CMT) disease. This is relatively newly discovered, and he’s an anomaly for the current definition, which states the age of onset is 6-54 years old. The condition could be progressive, or it could not. We don’t know. Even among multiple siblings in the same family, all of whom have CMT, in some it progresses and in others it doesn’t. We don’t know if this type will function like CMT or not, but they are considered “cousin” conditions.

In addition, we learned that both of the AARS mutations come from me, so I am at risk for later onset of the condition. I will need to undergo a nerve conduction study and EMG like they did for Gabe earlier this year. If I come back with abnormal findings, it will give us more evidence that this condition is what Gabe has. There is a chance that I could start to show symptoms someday…or not. We don’t know.

So, the next steps are the nerve tests for me, a genetic test for Owen to see if he has the mutations and continued serial casting for Gabe. He is crawling in his casts which is wonderful and lifts my soul above the fray on an hourly basis.

Gabe Casts - 11 monthsBefore Friday, our framework did not include the possibility of Gabriel having a potentially progressive condition. All of our definitions have imploded (again), expanding, though we beg them to stay stagnant. The answers only bring about more questions, questions with answers we aren’t sure we want to hear, with no promises of when they will be revealed, much less how.

The sharing and bearing of burdens I experienced this weekend tasted like the kingdom, with one critical difference. Someday, though I may struggle to believe it, we will no longer need to share our burdens. We will only, beautifully, eternally share our joys in the Healer, in the One whose bearing of burdens and participation in our pain extracts the presence and sting of our suffering entirely. I’m desperate for that day.

We are so thankful for each of you who pray for us, who love us in word and deed. Please pray for Gabriel’s healing. Please pray for strength of heart, perseverance, belief for all of us, whether the Lord chooses to remove this thorn or not. Please pray for us to steward this story of our son and our family well, to exalt the Lord higher and greater as life drives us lower and deeper. We are confused by Him, our categories are too small for Him, we behold Him as in a mirror, darkly, and say, “to Whom shall we go if not with You, Lord? We believe. Help our unbelief.”

We cling to the hope of the day where the darkness will be as light, the night shining like the day. And until that day comes, we grab hands with each of you who have offered them so graciously, so strong in their grip as ours tremble. You are His body, the Church, reminding us of His goodness when we don’t know what that word means anymore. You are showing us what it means, far beyond any written definition, and we will never be able to thank you enough.

i’m in the anger phase. 

Gabriel got new braces today. And I hate them.   
Structurally, they’re no different than his previous pair. The straps work the same way and he goes on with his life like they hardly exist just like he did before, stopping perhaps only to play with the Velcro for a moment then moving on to something else. 

Because Gabe’s feet don’t grow in proportion to the rest of his body, the telltale sign of a toe growing over the edge of his orthotic had not yet happened, so it hadn’t occurred to me that he needed new ones. But his legs have grown a great deal since January, when his original orthotics were fitted, and they don’t grip his legs well enough anymore to keep his feet in the correct position. Enter, the new pair, reaching up to just below his chubby, dimpled knees. 

His socks no longer fold over to cover the ugly plastic or crunchy Velcro that’s sure to be dirty by week’s end. These braces look so dominant to me, like a glaring reminder that this is all going to get harder. He may very well have to wear this style of brace well into his school aged years. What ugly names will kids dream up for them, for him? What kind of shoes will fit over these? While his brother is picking from countless pairs of basketball shoes or soccer cleats, what will Gabe be left with? 

Life is about so much more than peer’s opinions or choice, I know this. To be reminded of our weakness, our dependence, our limitation, is in truth a blessing rich and pure. But blessings can feel like stones sometimes, when my heart is crying out for bread. It takes time to acquire the taste, to realize that these aren’t rocks in my mouth, but morsels of heavenly manna. And tonight, that time looks like acknowledging the grief cycle and validating it, accepting that it’s repeated itself many times over since Gabe was born and will again. And tonight, I’m in the anger phase. This isn’t what I want for him.
It could be so much worse, I know. But has that mental game ever, and I mean ever, really lifted one’s spirit beyond a fleeting moment? Of course it could be worse. Gabe has legs, and he crawls on them. Though it may be awkward or challenging, by God’s grace, he will most likely walk. But tonight, I’m just grieved for my child. I’m grieved that soon his mind will understand the questions about what he can and can’t do, about this one part of who he is that threatens to rule his story. 

“Is he walking yet?”

“What’s his diagnosis?”

“Are his legs broken?”

Questions so well meaning, so understandable, so unfairly and unintentionally landing like breath-stealing punches.

Maybe it’s overboard to share moments this raw, the moments where I can still confidently say that I trust the Lord but that I loathe the hand we’ve been dealt, just for tonight. The moments where I’m sure grace and joy and hope will come in the morning, but tonight, Gabe’s story feels crushing and unending and painful. Maybe it’s overboard, but I think that more likely, it’s just another piece of the manna, the realization of just how imperative this truth-telling is, that letting others in is perhaps the only way to allow some of the agony to bleed out. It doesn’t feel like agony every day, but today it does. And the agony feels like angry and the angry begs me to call it what it is and just sit here for a minute, just feel it. So I’m feeling it, and sharing it, and not wishing it away, but welcoming it, as my dear friend Amy taught me this week. He can work all things together for good, even a mother’s heartbroken anger. 

So, I’m just going to sit here a minute, and whisper out to each of you, “Hi, I’m Abby. And I’m in the anger phase.” 

flesh & bones.

The planned parenthood videos. It’s all been said and yet it can’t be said enough. Their contents are horror and tragedy and grief, babies mutilated and mothers deceived, made to believe this is a new beginning when it is, simply put, the most tragic of endings.

Abortion is many things. It is a tangled web of problems masquerading as a solution. It is a way into darkness though it promises to be a way out, toward the light. It is, as Trevin Wax has said, “the blood sacrifice we make to the goddess of unfettered sexual desire.” It is also, oftentimes, the result of systems leading to their natural ends, of the marginalized feeling as though they have no other choice, that abortion is the most merciful act possible, at least the child won’t have to endure a world of pain and hunger and poor.

For Christians, this is the time for a response, a time to recognize that the world is watching for our next move. Many have spoken to that. I’ve been especially encouraged by and thankful for the surge of voices exhorting us to speak for the unborn and for women, to open our arms to all – to those who would consider abortion, to those who have done it, to the babies looking for arms in which to be held.

A flame burns inside me and it can’t be snuffed out – we must, mustMUST be hands and feet in these evil days, we cannot simply be mouths. We must counter child sacrifice with personal sacrifice, we must fill empty bedrooms and give more than feels safe and open doors we’d prefer remain closed. We must ask questions that would rather stay locked up in our minds, because the answers may lead to conviction, may lead to lives that feel reckless but maybe they are really just love in all its robust glory. If we claim to be lovers of the flesh and bones of tiny beings ripped apart, disregarded, even trafficked, we must put some flesh on the bones of our beliefs and step into the darkness with compassion and relentless devotion.

There are so many ways to do this and those listed below just scratch the surface. My hope for this post is to spur conversation, encourage ideas, foster change, help us all become brighter reflections of the bright hope within us. We need to show the world that we are here, church; that we will love and defend and welcome and help when no one else will. We cannot lead those faced with the dreadful decision of how to “handle” a pregnancy away from abortion if we are unwilling to step in, to be life on life encouragement, support, and aid. I pray we will become passionate about becoming the type of people who are thought of as the ones who will help, the ones who will say yes when the world says no. May we be the early church, rushing to the aid of the oppressed, alone, afraid. May our love for God’s way, truth, standards and people lead us toward the broken and fearful, not away from them.

This is just the tip of the iceberg. Let us help one another to think and engage well, to wisely and graciously enter into our culture with hearts and hands that live out our message – I will suffer so you don’t have to, defenseless baby, frightened mother, isolated family. I will suffer because my Jesus suffered for me, because He took my sin and shame and sadness on Himself and He paid for it all. I will suffer because I’ve already been told that in this world I will have trouble, but I can take heart. My Jesus has overcome the world.

May we reach out, unafraid.