No, this is not a blog about the challenges of getting adequate sleep with a newborn. I knew exactly what to expect when we brought Little Boy home, and I'm thrilled that we've got him home so soon and that I'm in the throes of every-2-to-3-hour feedings.
Instead, I am writing about the mysterious sleep patterns of children with cerebral palsy. This is an problem I never anticipated, but I'm discovering that sleep issues are more the rule than the exception with these children.
We've struggled off and on with Elli and her sleep routine since she first came home at 7 weeks old. As an infant, she never took the kind of hours-long naps that I had heard babies take. Her naps were 30 minutes to the second. If I didn't run to the shower as soon as she fell asleep in the morning, I'd miss my chance. I didn't have time to get a nap myself in that time -- even in my intensely sleep-deprived state, I still couldn't quite fall sleep in 30 minutes. Or maybe I did, but a 30 minute nap was but a flickering match compared to the massive glacier of sleep deficit I had going at the time.
Night-time sleep was also a challenge, mostly because until Elli's second heart surgery, we didn't think we could safely let her "cry it out" for long. She would get dusky -- her skin would get mottled and grayish, her mouth would get white, and she would soak herself with sweat whenever she got really worked up. When she was finally stable enough, at 7 months old, to cry as long as she wanted, she had developed some bad sleeping habits. It took weeks for her to stop crying for 30-45 minutes each night at bedtime, and she never quit crying altogether. (For some perspective, the next two siblings quit crying at bedtime or naptime after 2-3 days.)
If Elli wasn't ready to go to sleep when we were ready for her to, we'd just leave her in bed and ignore her protests. Sometimes it would be 2 hours, but she wasn't really bothering anyone.
Then siblings arrived. We put Big Boy in her room really early -- within the first 3 months -- so he's always been pretty good at sleeping through her scenes. Little Girl didn't start sharing a room with Elli until a year ago, when we moved into our new home. Elli's new room also shares a wall with ours, which is a double-whammy.
Little Girl isn't a great sleeper, though her problems seem to have started with the new sleeping arrangements. She wakes up with nightmares frequently, and almost invariably cries when she wakes up, whether from a nap or in the middle of the night. Elli can handle one outburst per night, if that. If Little Girl does this more than once (and this does happen), Elli is wide awake and it will be hours before she goes back to sleep, if at all. So them sharing a room isn't working out very well -- they each disturb the other frequently.
And all of this disturbs their mother. I have that mother's ability to hear the slightest noise from any child almost immediately. It's good when someone is sick or has a legitimate need. It's a pain because it keeps me awake when someone is wide awake and making noise for hours on end. I can't tune it out. And sharing a wall with the girls' room means I hear a lot more.
We've tried disciplining her for making noise at night. We've talked to her about considering others more important than herself, about how selfish it is to keep other people up just because she is awake, about obeying her parents, and more. After months and months, we've made zero progress with her. We've concluded that this is a level of cause and effect she is incapable of understanding. The other kids got it within days.
I feel very helpless these nights. The long hours drag by and I grow increasingly angry, frustrated, and desperate. I don't function well without sleep, especially when the lack of sleep persists for days. I know this, so I try to get the rest I need to help me be a good mom and wife. To have that need deliberately sabotaged is maddening. More so when I think of how the other kids are being affected -- their sleep is of poor quality those nights and it shows the next day.
During those late hours, I have concocted elaborate and desperate solutions to this problem: taking my pillow and a blanket out to the van to sleep (not an option in the current heat wave); putting Elli down in the basement on our spare toddler bed (too far away to hear if she has a real problem and too cold); buying and installing a sound-proof practice room for her to sleep in (too expensive and I have no idea how to provide adequate ventilation); finding a boarding house where she can sleep at night and still live with us during the day (don't think it exists and I really don't like her being out from under our roof); and using Benadryl or Sudafed to force her to sleep (fine when she's sick but unacceptable long-term).
We've tried moving her to the far end of the house, but my keen mother's ears can still hear her. It helps somewhat. I recently discovered that if I move out to that end of the house and turn on a fan, I can't hear her and can sleep. This still leaves the other kids in their bedrooms close to her, but Scott thinks they just need to learn to sleep through it.
In talking with doctors and other parents, I'm learning that this is all too common for kids with CP, and is likely to continue. One mom of a 17-year-old girl said that she hasn't slept through the night in years because her daughter always needs something in the night.
So we have to find a way to manage. We've started playing classical music for the girls all night, which at least seems to help Elli be quiet when she's awake. I'd like to find a white-noise machine, but so far haven't found something that runs all night (everything has an auto-shut-off after 10-60 minutes!). We're going to try earplugs too, (on the girls -- I can't wear them or I won't hear what I need to hear!).
But if it all fails, I think we'll need to move kids around. At that point, we'll be forced to conclude that Elli can't share a room. She'll have to move to the room across the hall from ours -- it's smaller and I'll hear her less. The other three could share the larger middle room, at least to sleep. It has plenty of room for a bunk bed and another twin bed. Little Girl's clothes and dresser could be in the smaller room. And we could try to soundproof the walls between the two kids' rooms.
I have to admit it can be depressing to think about dealing with this for the rest of Elli's life. I have a hard time seeing how this could possibly be good for me. My biggest struggles with her situation have come in the middle of the night when I'm exhausted and at the end of my rope. When she was a baby and I couldn't get her back to sleep, I even punched a door frame. Bad idea. Door frames don't give at all.
I've discovered I am very selfish about my sleep. I don't take kindly to someone messing with it, though I can rise above when they are really sick or in need. This is clearly an area God is working on with me. I guess sacrificial love means even giving up my sleep when someone is being selfish and just isn't tired, not just when they've got the flu or a had a nightmare and need a hug. And since I'm such an independent person, I'm guessing God is allowing me to get so exhausted to push me to rely on Him for strength for each day. Too bad I'm a stubborn and slow learner!
