breaking point

Jason and I are reaching a breaking point. We knew it when we started arguing this morning soon after we got up--really arguing, something we haven't done in months and months--over something as stupid as whether to fold up the pull-out couch before telling Jackson to hurry and get out of the shower, or after. Jason had the presence of mind to say to me, "I can't believe we're arguing about this, like this." And he was right. We don't argue that much (anymore), and we certainly don't get so fired up so quickly about so little.

Which can only mean one thing. We are exhausted. Spent. Reaching new lows.

We've both had nights in the last couple in which Moriah wakes up to feed and stays awake for a couple hours. Since Friday, her medication is making her sleepless; in 24 hours, she's slept now only 6. We are worn out. When she eats, she is voracious (another side effect of the steroids), and it takes about an hour to do a feeding. Times 5-6 feedings a day = 5-6 hours of time (usually mine). Yesterday, when Val came to visit she asked me (in kinder words that I can think of now) why I'm feeling so busy and tired, and it took me until this morning to realize...add up feed time, changing time (which now includes a few extra minutes of testing pee and poop), visiting nurse three times a week, and a complete lack of napping during the day (Moriah is now napping no longer than 10-15 minutes at a time during the day so I'm not getting any nap-break at all), and you get...us. Tired and overwhelmed.

And did I mention we have two teenage-ish sons, one of whom is really giving us a run for our money these last weeks?

We dragged ourselves to church this morning anyway. Mostly, I hate to admit it, because I had committed to our pastor to be there so that he and some others could anoint Moriah with oil after service today and ask God to heal her. That, and we love our morning parenting class there. And they have unlimited coffee at church. And we're enjoying our pastor's series on the book of Jonah. But mostly, mostly, because I had said we'd be there.

Moriah is not her sunny self anymore. She's more tired, and fussier, and sure enough, she and I didn't last the entire Sunday School class. By the time I got to service, I was frustrated I had bothered to come with a kid who won't sleep longer than 15 minutes, is fussy, and can't stay in nursery for fear of her weakened immune system.

And then, don't you know, who's leading singing this morning? The special needs adult Sunday School class. I don't know about your church or parish, but I've been in a lot of churches, and I think this is one of two I've seen that have a group just for adults with special needs. Really cool, actually. So I walk in, frustrated to be a special needs mom, and watch about a dozen men and women with special needs take to the stage. A couple of them share a reading from Psalm 139: "You knit me together in my mother's womb...I am fearfully and wonderfully made." Interesting, as Jason and I have been discussing that exact passage, wondering what it means for our Moriah...did God make her like this? Was he looking the other way? How exactly do birth defects, genetic defects, and baby ailments fit in to a worldview of a loving God? And then...and then they started singing. Loudly. And clapping. And bouncing up and down. And doing hand motions to their songs. And yelling when they got excited.

It was the first moment of joy I had felt all morning, to see people so energized about loving God back.

And then, I got to thinking. Someday, Moriah will be up there, a grown woman. Will she read? Will she sing loudly into the mike? Will she remember the hand motions? Will she throw up her hands in praise and dance with joy? And my heart began to break, because I want her to be like this--in love with God, and happy, and free. And yet, I want her to be...typical and be without special needs at all. And I can't have it both ways.

Usually in our church, nobody claps after a song. Actually, our church is fairly subdued compared to other churches I've been a part of. But this morning, the church was on its feet, clapping and doing hand motions, and after each song, clapping in encouragement for the group to sing on. And when the adults finished their song-leading, the place erupted in applause, and many of us stayed on our feet, giving the group a standing ovation.

I'm not sure what everybody else was thinking. I think a lot of us felt like these non-typical folks actually led us closer to loving God more fully, more unabashedly, than we usually get led on a Sunday morning. And that it was so refreshing to be led so freely. I'm not sure what everybody else was thinking, and I tried to remember what I might have thought before Moriah, as an observer like many in the church, as one untouched by a child with special needs. A sort of detachment, as in, they sure were cute, or amazing, or happy, and God bless those dear parents who raised them (and I'm so glad it wasn't me)? I mean, come on, isn't this what we all think when we see a person who is not so typical...but by the grace of God, go I? But is that really grace, after all, or our mixed-up notions of what "blessing" really means?

I, of course, couldn't watch and participate this morning without feeling that these adults were connected to me, and were, in fact, family. This made me happy, and proud, and angry, and sad, all at once, and when we took our seats after the applause (the adults left the stage skipping and whooping for joy!), I burst into tears and cried, eventually leaving the sanctuary to have a good cry with God in the ladies' room. I think He showed up there as I sensed a loving presence, and then I was overcome with tiredness and found an empty classroom and laid down for a while on the floor, to rest.

This, after all, is what church should be for, right? I think I remember Jesus saying he came not for the healthy, but for the sick. So I just laid myself right down on that carpet like his best patient, and waited for the strength to get off the floor, which came 30 minutes or so later.

I haven't really processed what happened today, and I have no cute-and-neat conclusion here. Just some raw emotion. A sense that we are being broken, over and over. A hope that God will meet us where we are broken, or tired, or angry, or sad, and that he will heal our sicknesses of heart. We are at a new breaking point, and I am grieving this week, maybe for the first time really, that I have a daughter with a seizure disorder, a daughter I am forced to inject with a steroid whose side effects I can barely tolerate seeing in her. I am grieving for the weaknesses I find in myself over and over, the moments when I just want to quit, the coming-to-the-end-of-my-rope that comes too soon and too often.

"A bruised reed He will not break; a smoldering wick He will not snuff out." --the Scriptures

do-over

So many times this week I've had to remind our boys (and one in particular) to "do over" their words or behavior. Yesterday's conversation on the way to school went something like, "Before we get out of the car, we need to set our relationships right and begin our day again. You both need to apologize to each other before you start your school day." Interesting. One did so sincerely, and when I came to pick him up at day's end, he bounded out of the school building with a super-cute comment about the "crazy weather" (snow showers followed by bright sun). The other made a less-than-sincere apology (um, actually a sarcastic and defiant one), and by school day's end, continued to carry the weight of a broken relationship, climbing into the car slowly, angrily, and barely able to speak.

Do-overs. How many times, in the worst of the depressed moments I've had since Moriah's birth, have I wished to do-over so many of the moments we've experienced! The moment she was diagnosed--to have touched my baby for "who" she was before I knew "what" she had. To have shed fewer panicked tears. And maybe, yes, it's crossed my mind, to go back to the "way we were"--a family of four, not of five. These have been painful do-over wishes.

This week I realized that I'm left with one consistent do-over. Monday I was exhausted and barely functioning. Tuesday I realized I had a chance to re-do Monday, to wake up and welcome the new day as a chance at a do-over, to be less curt with the boys and more accepting of all the appointments for Moriah I was dreading.

And then today came. This morning I was exhausted. When my alarm went off this morning, I truly thought it was for Jason, who by then was already long gone on his way to Lynn. I had already been up once during the night--at 3:30 am--to feed a voracious Moriah (the ACTH makes her so hungry, and she took nearly 15 ounces). And by the time I returned to sleep, at 5 am, I had only an hour of sleep before my alarm rang. I tried hitting the snooze button a few times. I tried waking up Jackson (always the first of the boys to get up and shower, as he takes the longest to get ready in the mornings) and returning to my sofa bed. And then I realized--Melissa, this is your do-over. Get up. Get going. Start a new day. And just as I thought this, Moriah woke up and started babbling, and I stumbled over and looked blearily into her pack-and-play (she's long outgrown the cradle she used to sleep in here and our crib mattress is--where else?--in storage, awaiting our move), and saw she was smiling so broadly. Welcoming a new morning, as she always does. Anticipating joy before it even arrives.

I love that. Her medical issues have certainly added stresses to our lives, but she is also the one who most often reminds me why life is worth doing over, day after day. She smiles, and gives me courage to welcome a new day, and the strength to ignore the unknown days ahead. The do-over, she seems to say, is right now. Get up, Mom! Here I am! Ready to start again!