My 7-year-old 1-year-old

We have entered a bold new world in our family. Elli has progressed in her development (a good thing). Instead of being at the physical level of a 3-6 month-old, she is now more like a 1-year-old... but in a 7-year-old's body (a very bad thing).

In this new stage, Elli grabs everything that comes within reach, and we vastly underestimate the scope of her reach. I remember this now. But with a 1-year-old, you aren't dealing with the height and strength that Elli has. Up til recently, it was more of a nuisance. She gets her hands on food bowls at the table, pulls the tablecloth, grabs at toys left on the floor, and insists on practicing rolling even though she still can only roll one way and gets mad when she gets stuck.

Last week we decided that we have to strap her arms to her wheelchair while we tube-feed her so she won't pull the tube right out of her body. She refuses to obey us when we tell her not to even touch the tubing. So until she can learn some self-control (who knows how long that will be), we have to protect her by immobilizing her arms.

But even pulling her feeding tube out is relatively minor. This weekend she showed us just how much trouble she is now capable of getting into. Thursday night we had to rearrange sleeping quarters and put Elli on an air mattress on the floor. We didn't realize how much she wiggles and how far she can get, even with these leg splints she wears at night. Elli managed to tip over a night table, pull the lamp on it to her, and get her hand stuck inside it. It was a touch lamp, so she was able to turn it on and couldn't turn it off because her hand was stuck. She burned to blisters the entire inside of her pinky on the hot bulb.

What none of us can understand is why she never cried. Not when she burned it. And not after, which hurts worse and for longer than the actual burn does. We didn't realize the finger was burned until the next morning! (These are the things that haunt a mother.)

The next day, she wiggled across another floor to grab the power cord to a decorative lamp. She pulled the lamp down, breaking part of it, and somehow wrapped the cord around her neck.

We are praising God that we caught both incidents before tragedy struck. And we are praying very hard for wisdom and discernment to foresee and avert any other major problems until she gets through this stage. It's a somewhat frightening time for us, and will be very draining as we can no longer leave her unattended safely. I'm praying that she doesn't take longer than a normal 1-year-old to learn all these cause-and-effect and obedience lessons.

Sleep and Sacrificial Love

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!

We're Crazy

At least, most people think so when they see us out. What else could explain two adults choosing to have more children after their first ends up in a wheelchair and unable to speak or feed herself?

I'm pretty used to fielding questions and comments about our family. But Scott got to experience this first-hand last Friday when he took the three kids by himself to the local children's museum. I had to take diversity training that day, and everyone else in his department was on vacation, so he decided to take a day off and spend some time having fun with the kids.

We've never taken them to the children's museum, though we've heard lots of great things about it. I hated to miss it, but I was really glad he got to do something fun with them. He took some great pictures of their day. The kids did GREAT for him, and they all LOVED the museum. In fact, I'm thinking about getting a season pass there instead of to the zoo this year -- we can go to the museum in any weather and might get more use out of it.

But it's funny -- I think the thing that stood out the most to him from their outing was the impression a lone father with three kids made on all the other visitors. He said he definitely could tell people were dumbfounded by the sight.

Little Girl behind the wheel of a city bus. Scary thought!

Big Boy is VERY curious about nature and how things work now.
He loved this magnifying glass on a track --
it rolled across a display case containing all sorts of artifacts.

Elli got to visit a wheelchair-accessible treehouse inside the museum.
Scott said the whole place was very accessible to wheelchairs.