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.