It’s no secret that our special needs son has sleep problems. It’s been true since the first days of his life. I still remember his never-more-than-twenty-minute naps. And his rarely-more-than-2-hour stretches of sleep during his first year (and often only 30 minutes or an hour). Then his first year ended, but the sleep problems sallied forth.
His feeding tube and anti-seizure meds gave some reprieve, but not enough to make anything close to normal. Three and a half years in and he’s still up every night, usually multiple times or for sessions of writhing/crying. I don’t share this as a pity play, but a fact.
Lately I was reading The Life We Never Expected by Andrew and Rachel Wilson. It’s a book about hard realities and Gospel hope raising two autistic children. I haven’t ventured into much reading of this sort on disability because when you’re living a hard reality, the last thing I feel like doing is reading about how hard it is. The real thing is enough. But I read it so that I could see if it was a good book to recommend to others. And it is. It’s really good. These excerpts from the chapter Quest For Rest wrecked me:
…”it’s no coincidence that the Scriptures talk about fasting from various physical joys at times–food, drink, sex–but never from sleep.”
“In our case, this has meant reconfiguring our entire lives to get more rest.”
“…we’re learning how to pray and process our disappointment with God. It might sound ridiculous to say this, in light of all that has happened over the past few years, but I think the greatest single challenge to my prayer life has been the fact that so many prayers for sleep have gone unanswered. For night after night, I have put Zeke in bed, knelt down next to him, and said, ‘Father, we pray that you would give Zeke a good night’s sleep. Please give him peace and rest, and may he wake up after 5 o’clock, or even after six. It would be so much better for him and so much better for us, and it would cost you nothing. Please, Father. Amen.”
“Then the next morning, as the familiar patter of feet comes down the corridor toward our bedroom, I have rolled over to look at the alarm clock and seen in despair that it says 4:27, or 3:52, or 4:41. And immediately the thought comes: No, God hasn’t answered my prayer. Again.”
The words are painful. They resonate. Tom and I have prayed every night since Titus was born for good rest for him and us. We have changed the rhythms of our lives to keep sane. We’ve let things go. Even so, sometimes I find myself pushed under water.
Titus has learned to pray. It’s one of the first constructive behaviors he picked up on and regularly started imitating. We’d fold our hands and bow our heads to pray and he would too. He still does. At night, I’ve never been able to get him to stop the cycle of writhing/crying once it starts up. It just has to play out. But probably 6 or more months ago, I started saying to him, in the dead middle of the night, very loudly and forcefully, “Titus, let’s pray!” And amazingly, the writhing and crying stopped and he grabbed my hand, closed his eyes and waited for me to pray. Which I did. It felt a bit like a miracle.
Now he asks me to pray anywhere from 2 to 10 times per night, depending on how much he’s up. He wakes up and says, “Mommy! Pray! Pray! Mommy!” There have been nights when I’ve wanted not to pray. The seeming futility of it overwhelms me, and I think, What good is it to pray, when I ask night after night for rest and the answer is no, and Titus will be asking me to pray again in 10 minutes or an hour or 2 hours.
Titus still writhes and cries at night, he’s still up just as much as he ever was before he started asking me to pray through the night. But, in my despair over the sleep, I could easily miss something huge. My son asks to pray. My son asks to pray.
Think of all the kindness of God and answered prayer in him asking to pray. It’s worth pausing over and giving thanks for.
Even as I give thanks for that amazing thing, it doesn’t erase the difficulty of sleep problems. It is grueling and lonely. Yet, prayer keeps me from being isolated from the One person I can’t live without. In the darkness, we turn to God and pray, because he’s there with us. The rest of the house may be asleep, but God isn’t. In bleariness and bone-weariness, I talk to the One who keeps our souls through the night.
If you find yourself in the dark and seemingly alone, my hope for you is that you would know God’s nearness. Sometimes the darkness remains, sometimes the circumstances won’t change, but always, always, always, he’s there. He’s keeping you and that’s what counts.
 I lift up my eyes to the hills.
From where does my help come?
 My help comes from the LORD,
who made heaven and earth.
 He will not let your foot be moved;
he who keeps you will not slumber.
 Behold, he who keeps Israel
will neither slumber nor sleep.
 The LORD is your keeper;
the LORD is your shade on your right hand.
 The sun shall not strike you by day,
nor the moon by night.
 The LORD will keep you from all evil;
he will keep your life.
 The LORD will keep
your going out and your coming in
from this time forth and forevermore. (ESV)