We have been held so tightly the last week. Held and whispered to and loved so gently by Father. I’m a logistics girl. You hand me a problem and I’ll take it to the mattress until I’ve got it nailed. I spring into action. It’s what I do. And so the last week has been a blur of open tabs for each of the three transplant locations that have been mentioned. Tabs for Zillow and Trulia and searches on schools and churches and things to do. I scroll and search and none of them are perfect because none of them are home. But just yesterday, I spoke to a love, telling her that I can’t see a path forward that doesn’t cost more than we have, financially, emotionally, physically and she responded with this: Jesus is the Way Maker. He goes before and he makes paths straight so when your legs are shaking and tired and you think you can’t take another step on this crazy path, he bolsters you with one simple direction: just keep walking. The housing, the schooling, the shifting of family roles and the splitting up, that will all be taken care of. You, Megan, you are not the path maker, you are the path walker. Jesus is all, just stay in your lane, man. Because my natural bent is to try to make the path I’m going to walk upon, but that is not my work. Never was. And thank heavens because I would make a total mess of it. Just a total mess. Because path making is not a sign of my strength, my ability to plan and execute. Path making is a sign of my lack of faith. There it is. My ridiculous lack of faith begs me give it a shot because Jesus might not blaze the path that I asked for. Jesus is going to go rogue, I’m sure of it. He’s going to do something smack nuts like Chinese adoption that leads to heart transplant and maybe moving, oh wait. See? Jesus is crazy like that. He is the path maker but he’s also the energy giver, the blister healer, the water provider, the baggage handler, the bump smoother. He’s all those things if only I’ll be the one thing: path walker. Just go, he says, so gently and softly. Just go and I’ll take care of everything else because whatever path I set for you, I go first.
And so I close tabs and instead sit on couch, tears making silent tracks down my cheeks and offer him my off key worship, “You’re a good, good Father. It’s who you are. It’s who you are. It’s who you are. And I’m loved by you. It’s who I am. It’s who I am. You’re a good, good Father.” And as I sing, I get louder and more boisterous until I’m wearing a camp tee shirt and I’m on the church bus hurtling down some wonky dirt road to who the heck knows but Jesus has made a way and I’m not getting off this path until he shows us a new one and tells us to get walking. So to all you beautiful people who have offered to line our way with prayers…gosh, we are humbled and blessed. Seriously. The village is the best and I would kiss each and every one of your beautiful selves if I could. But maybe a better offering is the promise that where we go, you will too because I will write it all here and I will make it as honest and worshipful as I can because this life is our Isaac and because
this is me being real.
We met with Abe’s team this week and I hardly know what to write about it. They were so kind, taking nearly 2 hours to answer our questions and draw diagrams. This Hypertrophic CardioMyopathy is throwing us all for a loop and it is slowly strangling Abe’s heart. And he has these freakishly large carotid arteries that prevent them from being able to go in and scoop out the tissue to make his ventricles less strangled, which is the only treatment for HCM, besides the meds he’s on, which aren’t working. So the only thing that can save our boy is a transplant, which comes with it’s own set of problems: where to go and how to make it suck the least for all of us. We have given our kids the abridged version: that Abe needs a new heart and that we may have to go to California or Boston or Ann Arbor to get it but that we will do it like we do everything: together, us 8 and 2 dogs and a white blanket named Black and a keloid scar named Steve. We will do it together. But first we wait for conversations to happen and scans to be reviewed that will tell us if he’s a candidate and then how long we might wait. And if he’s not or it’s too long, he will go in and they will attempt a very tricky bi-ventricular repair and we will do that together too. Us and the village that has texted and let me cry on shoulders and given hard and frequent hugs. Our sweet office ladies at school who saw that the smallest bit of kindness yesterday would completely undo me, so let me be all business as we amended his emergency plan to account for the ridiculous amount of blood thinners he’s on now and the steps that will need to be taken if he falls and bleeds. His teacher who emailed verses and encouragement even as her own heart is surely breaking. Our fave principal who called and said, whatever you guys need from us, from us as a school and us as a family, you have it. Just name it. To the nana and papa who heard me say that we will do it together, the 8 of us and said, make it 10 because wherever you go, we will come too so we can be your help. Who offered to move with us to California so we won’t be alone if it comes to that. How to even get my teeth around that bit of yumminess? To friends and loves who have called and showed up and texted and who will continue to do so because they are our lifeblood.
We know this: that the Father who ordained that Abe be born in Inner Mongolia nearly 7 years ago with a bum heart that gets bum (mer) by the day, knew that where he actually belonged was here, at 9000, with a family who would move anywhere for him. And who are learning themselves how much love costs, but that it’s always in the budget. That the asinine rule of love math is that the more you give it away, the more you have to give and if Mr. Scrotenboer can explain that one then I will give him all the tea in china because it confounds me daily. We are teaching it to our kids as the math you will actually use in real life, because let’s be honest: sine and cosine…almost useless.
So we would covet your prayers as we wait to hear if Abe is a candidate for transplant and then as we hit the ground running toward a new heart and a cure for this kid who would spend all his day playing sports if that was a job. And as we process what this will mean as a family and work through the hard bits. For unity in our marriage and protection for us two, who 23 years ago said yes to the good and the hard and had no idea, just no freaking clue, what that would entail. For spring break. Three months ago when we planned to go, just the 8 of us, to explore New Mexico for a few days before meeting up with every blessed member of my family at Breckenridge CO, we were given the green light and now they are very concerned about the pressures in his heart at those high elevations. But they consider the whole child and know that this boy, whose greatest fear is being left behind, would shrink into a ball so small we wouldn’t be able to find him if we tried to make it a party of 7. So we will go and we won’t hesitate to fly back with him if he can’t hack it at 7,500 feet. Won’t hesitate for a second. And ultimately are going with our team’s blessing and the number of Denver Children’s on speed dial just in case. Would you cover that too?
this is me being real.
She called during the after-school hours, when the phone is cradled between ear and shoulder and hands are elbow deep in dinner prep and homework. And she had to repeat it thrice because I didn’t hear first and then didn’t believe second. Abram has been approved for a wish from the Make A Wish Foundation. A mistake, I was certain because he’s healthy and we didn’t nominate him. But Amy, a nurse at Helen DeVos Children’s Hospital who has taken care of him? heard about him? seen his file? did. I have no idea who you are, but Amy…you are a gift to think of this blue spectacled boy. To go far beyond your job and fill out the paperwork. Such a gift. I argued with Kirsten from MAW for a sec that surely Abe doesn’t meet the requirements, isn’t terminal, is at this very moment driving me nuts with his basketball in the kitchen. But the criteria is Medically Critical and he is that on paper and someday his paper diagnosis will translate into his real life, already is in smallish ways. And so I cried hot tears on the phone. For joy at the thought of anything he wishes. For the sadness of the reality of his health. For the selflessness of a nurse named Amy and a group that seeks to bless sick kids with the incredible. And then I told Dan and the three olders who all had to think a minute about what this all means and why I’m crying and if this is something we can even accept on Abe’s behalf.
They asked yesterday if Abe would know what his wish might be when they start hanging out with our family in a couple weeks to get their finger on our pulses. I said I couldn’t imagine he’d be able to articulate something so abstract, but maybe? And then last night as Grant, Dan and Abe were headed out the door to cheer our beloved Hawks on in districts, Grant said to him, “Beaky, if you could have anything in the whole wide world, what would you want?” and without hesitation and wearing his blue and gold jersey, he replied, “Meet Steph curry and break his ankles.” Which, is much less Tonya Harding than you’d think and more a slang for making someone stumble because you dodge them so quickly.
Still chewing on the fat of all this. Have been assured over and over that accepting this wouldn’t take it away from someone else and am starting to view it for the great gift it is. No idea how this will all end up, but for now there is a packet of papers headed to 9000 with all the information we need to give Abe this incredible wish. And next week when we meet with our cardiac team and find out what the next step is, I will be scanning name tags for Amy so I can squeeze her neck, even as I try to focus on the statistics they throw at us and the timeline they lay out. Next week we will hold a printed model of our son’s heart in our hands and listen to the most dedicated, talented group of docs we know lay it all out for us. Forgive me if I drift off half way through and think of my boy in his Warriors jersey maybe meeting his hero and it makes me stupid grin. I have a habit of inappropriate emotional response in stressful situations, ask anyone. Sometimes I think I should keep more of that stuff to myself, but
this is me being real.