A Week of No Sleep

In our home, who gets to sleep and when, is very precarious. Levi needs 24/7 ICU level care, which means someone is always awake caring for him. On rare occasions I, as a typical light-sleeping-hear-everything-mom, can rest next to Levi. Although I often awake at every change in his breathing pattern, beeping of the feeding pump, and alarming of his oxygen monitor.

On a typical week, Papa Shu comes home from a long day of work by 8:30pm and begins his night shift with Levi. Four nights a week we have a night nurse who arrives at midnight and leaves at seven am. I always the one to take over after the nurse. Three nights we have Parent Nights when Papa Shu remains awake till 2:00am, at which time he wakes me and thus begins my day. On a good night, I can rest next to Levi for one, maybe two hours, and certainly not consecutively. No matter how the early morning hours go, Younger Brother is always awake by 6:30am and our PCAs (Personal Care Assistants) for Levi don't arrive till 9:00am on weekdays. Basic algebra will tell you that as parents of Levi, we get about as much sleep as parents of newborns. The difference being we have been in this “stage” of life for over five years. This is our normal. People often ask me how I live on so little sleep? One day at a time, by the strength and grace of Christ.

This week, was far from typical. Papa Shu caught a cold that quickly developed into a cough and moved into his lungs. If he were a nurse or PCA for Levi, he would be asked to stay home until he was back to full health. As you know, Papa is already home, there is no where to “go.” For the first time in a long time, Papa's illness was serious enough that wearing a face mask and gloves and limiting his direct care time would not be enough to protect Levi. Papa needed to focus on sleeping as much as possible, avoiding all contact with Levi, and being relieved of all direct care time. Levi's respiratory system is very fragile and a simple cold can quickly become a serious pneumonia. Who then gets to step up to the plate and fill in for Papa? You guessed it, me, Mama Shu.

Each night this week, after putting Younger Brother to sleep, I have gotten an hour's nap, and then been up to care for Levi. Up till midnight on nurse nights, up nearly all night on parent nights. After five nights of this, I was becoming less and less able to keep track of the day's events and stay awake at night. It didn't help that this disruption in my sleeping patterns was affecting Younger Brother and he was waking several times in the night to seek me out and be comforted back to sleep.

By Friday night it was all I could do to count the hours till midnight when the nurse would arrive. Unfortunately this was also the night that Levi had awoken at 8:30pm, just as his PCA was leaving for the evening. It is not unusual for this to happen as he often drifts back to sleep soon after they leave. It is unusual for Levi to be bright-eyed awake with no prospects of him falling back asleep. After 2 hours of trying all of the usual tricks to encourage him back to sleep, Levi was still alert and I had no indication as to why he was uncomfortable in every position, yet had great heart rate and O2 numbers on his monitor (either of which can help assess possible pain). A mystery that my exhaustion wasn't helping to solve.

It was 12:30am before Levi finally drifted off to sleep, likely out of exhaustion. Our night nurse, however had yet to arrive. A call into the nursing agency didn't yield any new information but that the nurse was unreachable. Seriously? I could hardly believe my ears. Levi's nursing staffing is such that calling in a replacement isn't always possible and so last night became an unplanned parent night. Lord have mercy.

I would like to say it was a quiet and peaceful night for Levi, but it wasn't. The night was full of medications, managing his feedings in relation to high residuals in his stomach (which means he isn't digesting his food), interventions to clear his airway, support breathing, and release muscle spasms in his body. The good news is that he slept through it all. Just as I would get Levi repositioned and stabilized again, myself snuggled in close so I could hear every tiny change in his breathing, closing my eyes to rest for a moment, Younger Brother would awake and find his way downstairs asking for my help. It was as if the boys were playing volleyball and I was the ball. Just as one got settled the other would need my attention. Back and forth I bounced all night, praying for the Lord's wisdom and that nothing too major would happen with Levi. (Not that needing assistance clearing your airway isn't major. In our home it is major yet typical.)

I was so grateful that by the time morning came and Younger Brother was up for the day and hungry for breakfast that he has learned how to climb up to the fruit bowl, open the refrigerator and find himself something to eat. By the time Papa Shu awoke, I was in such a state of exhaustion that I could hardly lift my head to say good morning. It was that kind of exhaustion where your body feels like a weighted blanket and your mind is under water. Any one who knows me knows this is rare. Come morning I can always find the strength to get up and proceed with the next aspect of the day, but not this morning. Thankfully Levi was sleeping peacefully and Papa could tend to Younger Brother for a few hours while I somehow managed to pull my body upstairs and fall into a deep sleep.

By late morning there was still no word from our night nurse, who was scheduled to be on shift again tonight. By noon I got word that she had overslept... An honest mistake, one that can happen to anyone. Well not anyone. Just anyone but me... It is in these simple moments when I struggle with being understanding and forgiving or ferociously angry. My anger isn't really about the nurse oversleeping. It is about the reality of my life being such that I am the “backup” for everyone who cares for Levi. I am the one who fills in the gaps while also managing his entire team of caregivers and medical specialists and educators and therapists... Not to mention the needs of Younger Brother. There simply is no room for oversleeping. It is not possible, even as an honest mistake. If Levi's oxygen alarm doesn't wake me then Younger Brother does. Or at worst, my own poor sleep patterns of sleep equaling a 2-3 hour nap.

Part of me would really love to fire this nurse as a way of releasing some of my anger. Given that she is only three months into working with Levi and it took us over six months to find her, making that decision would benefit no one. In fact it would cost me more lost sleep. And sleep is too precious for me to do that. Instead I will take the road of attempted understanding and genuine forgiveness, while praying for Papa Shu's health to return so that our “typical” sleep patterns can resume their rhythms. Lord have mercy.

PS:

Later in the day I chose a more healthy route of releasing my ferocious anger by taking a Zumba class. Over the years I have learned that even in a state of continuous exhaustion, getting my body moving is a great way to relieve stress. In today's class I was gifted with the opportunity to get my grove on to Mandisa's song Overcomer. Below are the lyrics. Indeed the Lord does have mercy upon us, even in Zumba class.

Staring at a stop sign Watching people drive by T Mac on the radio Got so much on your mind Nothing's really going right Looking for a ray of hope Whatever it is you may be going through I know He's not gonna let it get the best of you You're an overcomer Stay in the fight ‘til the final round You're not going under ‘Cause God is holding you right now You might be down for a moment Feeling like it's hopeless That's when He reminds You That you're an overcomer You're an overcomer Everybody's been down Hit the bottom, hit the ground Oh, you're not alone Just take a breath, don't forget Hang on to His promises He wants You to know

You're an overcomer Stay in the fight ‘til the final round You're not going under ‘Cause God is holding you right now You might be down for a moment Feeling like it's hopeless That's when He reminds You That you're an overcomer You're an overcomer The same Man, the Great I am The one who overcame death Is living inside of You So just hold tight, fix your eyes On the one who holds your life There's nothing He can't do He's telling You

You're an overcomer Stay in the fight ‘til the final round You're not going under ‘Cause God is holding you right now You might be down for a moment Feeling like it's hopeless That's when He reminds You That you're an overcomer You're an overcomer