I'm Learning

I have been trying to write out what God has been teaching me lately... and it's taking a long time to organize my thoughts and get it all out. Part of the challenge is how busy the last few weeks have been and how poor my sleep has been. I just haven't had much time to try to digest what I've been learning into readable form. The other part of the challenge is that I keep seeing new things.

Today I had the opportunity to attend a women's Bible study on Mark 12:30 where Jesus Christ tells us what God desires of man.

And you shall love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.

To love God with the totality of my being starts with my mind. Everything that comes in enters through my mind. Every sin and every triumph starts with a thought and the outcomes depends on what I do with that thought. So the leader spent two hours going through Scripture to explain how we guard our minds. It is a battle. And if we fail to gird our minds with Truth, God's truth, we will fail and we will sin.

It was a two hours of teaching that I desperately needed to hear. Which means that everything in my circumstances and in my body fought to keep me home this morning. Luke woke up 4 times and Elli woke up for the day at 3am. I was exhausted and everything in me was yelling "Go back to bed!" But by God's grace and the accountability of knowing that two friends were expecting me to go and one was riding with me, I made it. Praise God.

So I'm hoping to get everything written by the end of the weekend. I have found that if I rewrite what I'm learning, it helps me sort it out in my mind and solidify it in my memory.

Life with Four, Month One

You know you've been to too many doctor's appointments when you walk up to the sign-in sheet for a registration desk that serves multiple doctors and services (e.g. outpatient therapies, lab, x-ray, and multiple doctor clinics) and you draw a blank. You can't remember which child you're signing in, which doctor, or which test you are there for.

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I walked into the children's outpatient center near our home the other day with only two of my children. I was pushing Elli in her wheelchair, carrying Luke in his infant carrier carseat, and somehow managing to hang onto a binder for my notes from the appointment and with a backpack jam-packed with necessities strapped to my back.

It was tricky, but I was managing. I had decided that carrying the carseat was ultimately easier than pulling a stroller behind me while pushing a wheelchair in front. Strollers have notoriously uncooperative wheels (especially when contrasted with the blissfully-smooth steering of multiple-thousand-dollar wheelchair).

An older woman with one child walked out as we were walking in. She made a comment I normally hear when out with 3 or more children: "My. You have your hands full."

This time I had a new response. "I left two more at home today!"

She was speechless.

And I was regretting their absence. Sam and Anna are quite helpful, as they like to push Sam's stroller. That frees up my arms considerably.

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Luke actually slept 6 hours in a row two nights in a row. Both nights I've woken up before he did, immediately panicked, and raced in to check on him. Why is it that moms always think something is wrong when their baby finally starts sleeping for longer?

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Last week we ran out of this absolutely spectacular coffee we were given as part of a baby gift when Luke was born. Nothing else tastes like coffee after our palettes have been so spoiled. We tried to make do with the above-average grocery store coffee we'd been drinking before, but it actually tasted more like tea to us now.

So we've been drinking half-caff and even decaff in a search for suitable coffee in our cabinets. All to no avail. Last night some friends picked up the delectable beans for us, and Scott left the hosue at 10:30pm to race over and get it from them.

But I have this depressing feeling that Luke's longer sleeping patterns at night might be a result of drinking less caffeine in the morning.

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I get calls from Children's hospital frequently. Since having Luke and since Elli's increased issues of late, I've come up with a new game for myself. It's called "Guess the Department."

It goes like this. I pick up the phone.

They say, "I'm so-and-so from Children's."

And I come up with some great response like, "Where in Children's?" or "Which child are you calling about?" or "You're going to have to help me out a bit.

OK, so those aren't great responses. I'm tired. But I am trying for something that isn't rude, but is something that will be memorable and express my need for just a little bit more identifying information.

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We've managed to be on time to church almost every week since Luke was born.

We have also managed to forget Scott's backpack with his laptop every week. We run slides with the words to our worship songs on his laptop, so it's rather essential.

Apparently the baby and a baby backpack has replaced Scott's backpack in our Sunday morning mental checklist!

100 Degrees

When I moved to the midwest 16 years ago, I was used to heat. I grew up in the desert southwest, where a normal summer day registered in the 100s. (Yes, it was a dry heat, and yes it really does make a difference. We lived in one house without air conditioning out there -- we used an evaporative cooling system to keep cool, and because the air was dry, this worked.)

Somewhere along the way, I picked up the idea that it just doesn't get to the 100s in the midwest. Not that it isn't hot. We more than make up for the lack of 100-degree heat with suffocatingly miserable humidity that can raise the heat index into the hundreds and kill more people than the dry heat of the southwest does.

Today proved me wrong. Here's the temperature in the shade on the north side of my house.

I Think I Met My Deadline

I wanted to make sure I finished this before Luke outgrew it. I think I managed. Left unsnapped it's almost long enough to be a sleep-sack!

"You musta thought I'd be, like, this big when I was born, Mom!"

"Hah! Boy did I have you fooled!"

Kid-isms

Anna: "Can I pet Wuke?"

Sam: (conversation about super-heroes and how Spiderman is better than Superman) "There's just one Spiderman. Just like there's just one true God."

Both: (when Luke is crying, or even if he isn't) "It's OK. You're OK. Sam/Anna is here."

Anna: "I can do it myself." when it's time to brush teeth
"I can't do it!" when going potty

First Solo Mission

First, I have to post a cute photo of Luke. What can I say? I'm a proud mom.


Ok. Today I decided to attempt my first solo trip with all four kids. Today was "Open Building" in our school district. New students to any building were free to come find their classroom/s and various other key spaces anytime. No teachers were present and the day had no structure -- it was simply a day they open the buildings for people to drop by.

I decided this would be a good first trip. We had no appointment to make and no-one to see. We could leave quickly if things fell apart. And it wasn't far away, so I could easily fit it in between feedings.

Remarkably, the entire trip went well, with one small exception. Anna didn't tell me she needed to go potty until we were half-way between school and home and she was desperate. It was a "mommy I have to go potty RIGHT NOW and uh-oh I already peed in my car seat" type of situation. Relatively minor in the scheme of things, and I was actually able to see that at the time and not over-react. I thank God for small victories.

Elli was very excited to see her school and talked about it quite a bit the rest of the day. We did run into one of her teachers and we tested out the accessible swing on the playground. Her teacher had put a photo of her two little boys in her class window, and we were able to get into the special education room, which everyone loved.

I took some pictures of all four kids in front of the school. I really can't decide which is best. Getting four kids of these ages to all look in the same direction with a pleasant expression on their faces is pretty much impossible. But they do have some entertainment value.

Here I have to remind Anna that she needs to say "cheese"

and look into the camera at the same time.

It's the return of the pasted-on smile.

And Elli is looking totally nonchalant.

Elli? We're taking your picture! Look here please!

Christ's Response to Tragedy

John Piper, a pastor in Minneapolis, wrote about a conversation he had with his daughter the night the bridge collapsed last week. The entire article is well worth reading. You can find it here. I haven't been personally touched by the incident, but I struggle daily with the suffering and death that accompanies us in this life. This article has encouraged me in a number of ways.

In it, he shares what he believes the Bible teaches about the meaning of tragedies such as this one. The best commentary is from Christ Himself in Luke 13:1-5. Some people asked Jesus about the slaughter of worshipers by Pilate, so He explains -- an answer to the meaning of tragedy straight from God.

"There were some present at that very time who told him about the Galileans whose blood Pilate had mingled with their sacrifices. And he answered them, 'Do you think that these Galileans were worse sinners than all the other Galileans, because they suffered in this way? No, I tell you; but unless you repent, you will all likewise perish. Or those eighteen on whom the tower in Siloam fell and killed them: do you think that they were worse offenders than all the others who lived in Jerusalem? No, I tell you; but unless you repent, you will all likewise perish.'"

Pastor Piper explains:

Jesus implies that those who brought him this news thought he would say that those who died, deserved to die, and that those who didn’t die did not deserve to die. That is not what he said. He said, everyone deserves to die. And if you and I don’t repent, we too will perish. This is a stunning response. It only makes sense from a view of reality that is radically oriented on God.

All of us have sinned against God, not just against man. This is an outrage ten thousand times worse than the collapse of the 35W bridge. That any human is breathing at this minute on this planet is sheer mercy from God. God makes the sun rise and the rain fall on those who do not treasure him above all else. He causes the heart to beat and the lungs to work for millions of people who deserve his wrath. This is a view of reality that desperately needs to be taught in our churches, so that we are prepared for the calamities of the world.

The meaning of the collapse of this bridge is that John Piper is a sinner and should repent or forfeit his life forever. That means I should turn from the silly preoccupations of my life and focus my mind’s attention and my heart’s affection on God and embrace Jesus Christ as my only hope for the forgiveness of my sins and for the hope of eternal life. That is God’s message in the collapse of this bridge. That is his most merciful message: there is still time to turn from sin and unbelief and destruction for those of us who live. If we could see the eternal calamity from which he is offering escape we would hear this as the most precious message in the world.

Kinda puts things into perspective, doesn't it? We shouldn't be surprised by calamity. We should be surprised that we receive mercy and grace at all.

Later in the passage, he addressed the suffering of believers specifically, not just all people in general. I was struck by this section in particular.

The word “bridge” does not occur in the Bible. There may be two reasons. One is that God doesn’t build bridges, he divides seas. The other is that usually his people must pass through the deadly currents of suffering and death, not simply ride over them. “When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you” (Isaiah 43:2). They may drown you. But I will be with you in life and death.

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written, "For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered." No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life . . . will be able to separate us from the love of God in Christ Jesus our Lord. (Romans 8:35-38)

Killed all day long. But not separated from Christ. We go through the river. Not over it. He went before us, crucified. He came out on the other side. He knows the way through. With him we will make it. That is the message we have for the precious sinners in the Twin Cities. He died for your sins. He rose again. He saves all who trust him. We die, but because of him, we do not die.

Jesus said, "I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die.” (John 11:25)

Just because God doesn't make a way out or around or over some pain or difficulty or death doesn't mean we lack faith or that we aren't His children or that He isn't God. Jesus is alive. He will carry us through the river. He will walk with us through the valley of the shadow. And He uses these things in our lives to display Himself to others.

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.

John 9:1-3

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!