Over the last two or so months I've weekly been waking up in the middle of the night in a panic, fearful I forgot to give Job his night dose of transplant meds. I usually get up and go check that there are empty used syringes and I sit there and watch him and make sure I'm fully awake and absolutely sure I did give meds.
But tonight's dream was even worse. I dreamed that I hadn't given Job's immunosuppressant meds for days and days and upon realizing this went and checked on him and he was in rejection. And then I really actually woke up from my dream and did my whole thing where I check that I gave meds and check his breathing and so on. It felt like the most realistic dream I've ever had, with so many specific and perfect details.
It's now been almost two hours and my usual prayer>worship music>Bible audio>audiobook>silence>read a book>do a chore regimen hasn't help the panic subside. Of course, the idea that these new-to-me nightmares are now intensifying and will continue in future weeks doesn't help.
Laying here, I realized I never updated on Job's G-tube so I decided to pull out my computer and write up a blog post. But I guess I have a lot to say, so I decided to split it into two posts. Here's the official May (and G-tube) update: https://frightfulsheart.blogspot.com/2021/05/may-2021-update.html.
Often, especially this year, it has not been helpful to type out what I'm thinking or feeling. To be honest, I've tried to hold myself to that maxim "if you can't say anything nice, don't say anything at all".
But sometimes I do need to process "verbally" if for no other reason than for me to later be able to read my agonized musings at a later date and then be able to remember what was hard about this particular season of life. I don't want to purge the record of this hard year. I want to be able to someday look back and remember how painful this was.
I've said this so many times, but adult life, taking care of Job life, has made me so much more sympathetic to the Israelites' moanings about Egypt and the prominence of the Exodus and desert wanderings and longing for the Promise Land story all throughout Scripture. I used to get so very tired of hearing about the Exodus again and again, but now I can't get enough of it.
I had a meltdown this week.
Job had an overnight sleep study. It was one of those days where I'd been working, at baseball practice, cleaning house, homeschooling, and then we headed up to Bellevue for a "date at a sleeping hospital". We got a special treat and checked in (of course, it happened to be at the same complex where my grandpa died almost 5 years-to-the-day previous - oh, and during a week when my grandma is in the ICU).
Job did really well, watching Teenage Mutant Ninja Turtles (a new-to-him/us discovery based on some story Seth recently told about his own childhood), and chatting with the sleep technician as he pasted colorful wire after colorful wire all over Job's arms and legs and head (I think he had 10 wires on his face and 20 in his hair). But when they brought out a nasal cannula Job lost it. He was just hysterical. Shaking.
I was able to get him to calm down and fall asleep and then they came in an put on the cannula as he slept. But I couldn't calm down enough to sleep. And Job didn't sleep well, waking up and calling for me several times.
They woke us up at 5:30am and got us checked out and we found a doughnut shop and sat at Lake Washington and watched fish jump. Job was so excited by the idea of a lake named after the place we live. We drove home, having another one of those super intense conversations about all of the broken parts of his body and about the baby who died and whose heart he has as his "new working heart".
We got home and as I started making breakfast for the big boys, Seth told me about a part of his day, the day before, wherein someone was tired of wearing a face mask. I just got so angry. And then so shocked I was so angry. And then so very sad. I'm surprised I got so worked up but it was probably pent up emotion exacerbated by scant sleep. Seth wasn't at all trying to provoke me. And it's not like I enjoy wearing a mask myself or see them as oh so effective.
But I have spent so many many hours, these past five years, watching Job struggle to breathe. The last seven months have been excruciating, trying to decide daily which risk I want to deal with: the risk of pneumonia or the risk of dehydration? And your hardship is wearing a mask??!
And if it's not complaining about CDC requirements, then it feels like it's often mockery of the people who are trying to figure out how/when to follow them. So I'm really reluctant to re-enter into society, or at least my old circles, not really because of germ exposure but because of the divisions that have become more obvious and, most troubling, heightened by vehement pontificating (not just on the internet, though certainly it's probably least kind when typed).
I can, and did (and will again), then talk myself through all the things I know to be true about trusting God's sovereignty and love for Job, about trial and the very individualized sufferings He has called each of us to endure for His glory and our good, about extending grace and care towards others, and so on. It is my responsibility to "be quick to hear, slow to speak, slow to anger" and "bear all things, believe all things, hope all things, endure all things". Actually, we've been working through Ecclesiastes (which couldn't have been more timely) and I'm trying to repeat verse 7:21-22 to myself daily: "Do not take to heart all the things that people say, lest you hear your servant cursing you. Your heart knows that many times you yourself have cursed others."
Life is really beginning to revert back to old normals. So many things that were on pause for most of this year are now lurching back into place, though they do look different in many respects.
I think I've established the fact that I'm nervous. I expect that it will really hurt. It already has hurt. I'm grieving a lot of "little deaths" of how things were, of how I want them to be, of relationships that are no more, of relationships that are so different, of decisions people around me have made, of decisions I have made.
I want to be gracious. I want to focus on the Most Important Things. I want to be willing to open myself up to hurt again, to exhaustion and frustration, because I want to be willing to interact with people again. (Or maybe I'm still in the stage where I want *to want* to be willing...) I feel immensely disappointed in and hurt by Christian conservatives because their tone has been so strident to my ears this long winter, try as I might to hide in a corner with earplugs (so I'm preaching to myself constantly and finding many of Tim Challies' A La Carte links immensely helpful in this quest, like https://www.feedingonchrist.com/blog/post/what-the-church-needs and https://the-palest-ink.com/2021/04/12/please-stay/ lately).
I don't know how to carefully reintegrate with a heart that is slow to take offense and quick to love. I don't know how to help my kid who has loved the lockdown and been so rejuvenated by the decreased face-to-face (actually, loud volume to ear?) pressure to begin to reintegrate. I don't know how to help my kid who suffered the deprivation of lots of people time!! to reintegrate. I don't know how to make plans for the summer, let alone coming fall. And it all feels necessary to finally sort through now that Job is finally (seemingly?) stable.
[Speaking of which... Maybe next time I can't sleep thanks to a nightmare I'll finally finish the draft post I've had sitting here about the Challies family and how reading about their grief this year has been such a balm to my soul and model for me.]
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