Monday, May 09, 2011

Updates and Ramblings

(Quick update: Spoke with the Riley doctors today--while they would like to see Sam attempt another sleep study, they said they will hold off scheduling until we meet with an ENT this Friday. The hope is that this ENT will be able to figure out enough details concerning Sam's adenoids and tonsils that he can comfortably do surgery without a sleep study (there can be serious complications in removing tonsils if apnea is an issue). We're praying for clear direction this Friday.)

Not long ago I mentioned how much I'm enjoying Sarah Young's Jesus Calling. I find myself continually coming back to the entry on April 30:

"When some basic need is lacking--time, energy, money--consider yourself blessed. Your very lack is an opportunity to latch onto me in unashamed dependence."

When I read these first two sentences I simultaneously cringed and rolled my eyes. It was a bit too Pollyanna-ish and didn't seem to take seriously the problem of pain. But then I read on...

"When you begin your day with inadequate resources, you must concentrate your efforts on the present moment. This is where you are meant to live--in the present."

My days have been beginning with inadequate resources lately. It's been a physical and mental fatigue that has settled deep within my bones. In many ways the only way I can function is to be completely focused on the present moment. Following a recipe requires my complete attention. Conversing with John requires my complete attention or I will literally lose my thought part way through a sentence. Changing a diaper requires my complete attention.

As a self-confessed multi-tasker task-switcher this has been an adjustment for me. I'm grateful for Young's words because she is revealing to me how this sleep situation (or lack thereof) is pulling out of me something that I truly value: Being. Completely. Present. To. The. Present.

I desire to carry this concentration on the present along with me regardless of what my sleep patterns look like. While I do not enjoy my circumstances, nor do I want them to persist, this is the kind of person I want to be at all times: one who is fully living in the present.

I need to pause for a moment and acknowledge something that's been gnawing at me since I first posted about Sam's sleeping problem (which has quickly escalated into Sam's breathing problems). I find myself struggling to know how to talk about pain. I have a hard time knowing how to express my own difficulties knowing that every thing is relative. I teeter between feeling sorry for myself and then feeling enormously grateful for all we have.

I walk into Riley and see children unable to walk. We had a delightful conversation with a beautiful 16-year-old girl with cystic fibrosis waiting to see the Sam doctor Sam will see. We see children without the ability to talk, hear, see. We see children who appear to be perfectly whole yet are living with a death sentence hanging over their heads. 

Things started getting really rough with Sam in March. He was waking up four or five times a night, often screaming. Often crying for no apparent reason for an hour or two. It felt brutal. And yet, multiple times, as I walked to his room in the middle of the night I was reminded of the sobering fact that many, many friends and acquaintances would give all they had to be able to comfort a child in the other room.

And yet this is our "present". And I'm trying to figure out what it means to live fully in our present in a way that acknowledges the deep-seeded suffering of others without diminishing our own difficulties. 

Despite my desire to live fully in the present, I do regularly pray a prayer for the future: "Come, Lord Jesus, Come." 


K. Boshernitzan said...

I know you've probably thought of this/mentioned it to his doctors - but are Sam's breathing problems in any way related to his 9 months of fever?

Jaena said...

Your thoughts on the balance of accepting and living in pain yet being grateful for blessings in the midst of it really resonate with me, Mandy. Thanks for your vulnerability and sharing.

Elizabeth Glass-Turner said...

what a great quote.

I have found, over time, two things.

*Worrying that I minimize others' suffering by acknowledging my own can surprisingly cheat myself and others. Forcing myself to remember others' suffering in the midst of my own, rather than growing gratitude, reinforces the illusion that I am still the giver, they, the recipient: it is my job to bless, theirs to be blessed. But how much harder is it to sit still and allow myself to be the one suffering, to say "here is my limit, I've found it," and to own that even if it seems small to others in comparison to tsunamis and war, it is still big to me, in my life. What is telling is that when I myself compare my circumstances to the 'big' ones like tornadoes or third-world poverty, I find I'm telling myself my suffering isn't a big deal. But when I share what I'm going through with others, they most often never minimize it. They would never consider saying 'you're being weak, look at those poor people over there.' I think sometimes I try to use comparison of my circumstances to others' as a way to 'power through' difficulty - but that very effort is me-dependent, me-powered, and I end up exhausted, because it's not the same as joy. And it keeps people from helping me, cheating them of the opportunity to bless me through giving. In the end, if I want to learn from my suffering, as a season God has allowed in my life, I have to acknowledge the suffering - and it's depth in my life. We miss what God's trying to give us - community - by thinking in triage ("they need it more than I do"). But our system of triage thinking may not be God's economy, if only I will flag someone down and say "over here, we need someone over here - stat."

*It all depends on who and when. It's very surprising to see who pops up with support, encouragement and relief. I don't call friends or family who I know are going through crucial crises. But others are happy to step in, step up, especially when I let them know how hard a time it is. And when they ask what they can do, think like a funeral:
-call ahead
-short visits
-take the kids for a while
-do my laundry
-let me sleep
-frozen, ready to bake casseroles

Be willing to accept; be ready with tangible, schedule-able, one-time-commitment ideas.

Mandy, today, I've got your hand. We're in this together. And I bet a bunch of other people would love to have your laundry, and your freezer.

Take, and eat.

Amanda said...

Thanks, Jaena!

Amanda said...

Elizabeth: those are wise, wise words. Thank you for sharing. I'm going to copy and paste your comment to read over and over again. Thanks.

K. Boshernitzan: I've been wondering that myself. No one has made a connection yet, but we see a new doctor on Friday and I will definitely bring it up then.