Monday, May 30, 2011

O For Grace to Trust Him More

I think my pastor is sneaking into my house and reading my journal. I don't mean that in a creepy way; rather in a once-again-he-said-exactly-what-I-needed-to-hear kind of way. Here are my take-aways from yesterday's sermon:

From Bonhoeffer: "People try to do for themselves what they expect God not to do."

From Deneff: "People who worry constantly underestimate the Father's love for them."

He did some exegesis on the Sermon on the Mount where Jesus says, "Do not worry." He expounds upon the Greek to give a more nuanced understanding of the phrase. We could read this phrase as, "You don't have to worry." It's not that worry is a sin necessarily, but that it's useless to worry. So I can worry if I want to...it just won't do any good. I don't have to worry. Wonderful, wonderful reminder to focus on the present.

These words were needed last night as poor Sam battled a night terror on top of his difficulty breathing. Rushing to a child having a night terror only frightens him and we've been told to wait in the doorway while he fights it out to make sure he doesn't hurt himself. Only after the night terror passes can we comfort him. Going to him too early only makes things worse. We've been reassured that Sam has no memory of the terrors when they are finished (and Sam has confirmed this). Nevertheless, it breaks my heart to hear him calling, "No! No! Mommy! I want my Mommy!" and know that if he sees me it will only make things worse.

So last night I stood in his doorway while he cried. I stood and prayed. I stood and reminded myself, "He won't remember this. He won't remember this." And when the terror passed and he began calling, "Hold me, Mommy," I ran to him and rocked him for a bit while we discussed animals that can see in the dark.

These words were needed late last night when I realized I was sick. Sick. Sick. Sick. As in barely able to get out of bed, head explodes when I move sick. (Lucky for you you cannot pick up tone through the Internet because my current state of whininess would make you cringe). I'm thankful it's Memorial Day so John is available to watch the kids. I'm annoyed that it's Memorial Day because every single doctor's office is closed. Someone has a case of the Mondays.

I've found the easiest way for me to be present in the moment is to simply repeat what it is I'm presently doing--almost as a mantra.

"Nurse. Nurse. Nurse."
"Drink. Drink. Drink.
"Stairs. Stairs. Stairs."

And after I hit "Publish Post" it will be "Sleep. Sleep. Sleep."

I don't have to worry.

Sunday, May 29, 2011

Strong Enough for a Man

You know you are sleep deprived and a wee bit discouraged when you feel a flicker of hope upon misreading your deodorant as having "antidepressant properties". 

If only Teen Spirit were that powerful.

Saturday, May 28, 2011

Three Rules for Visiting the Doctor

I have three rules whenever I visit doctor's offices:

1. Dress like a professional--I read an article once about how doctors subconsciously tend to listen better to professionals.

2. Don't wipe the snot--I learned this one from my mom. I have some humorous memories of my mother whispering for me to not wipe my nose until the doctor had seen me. I find myself doing the same thing, "No, let's let that gunk stay in your eye for a few more hours until the doctor can see it."

3. Finally, sticks to the facts and save emotions for the end--I've found it helpful to begin an appointment by simply going over the facts devoid of emotion. I try to just report what a video camera might catch. So instead of beginning an appointment by saying, "I don't know what to do, my son won't sleep and I think I'm losing my mind," (all true), I say, "Here's a sleep log. You can see Sam tends to get up three times a night, sometimes for as long as two hours." Boom. There it is. My response to the sleep is the side-effect, not the root. Now it's quite possible if the doctor shows any hint of a bedside manner I might end up tearing up, but that's normally just at the end.

This last rule has been the most important for us. I neglected to come armed with the facts during my very first doctors visit and was told to try de-cluttering his room so he wasn't distracted at night. Not helpful. I was armed and ready for the next visit. I had charts, graphs, you name it. I kept a journal of what his daytime behavior looked like after a poor night's sleep (attitude, eating, potty-training, the inability to walk in a straight line, etc.)

Sam's been having some noticeable breathing problems the past two nights. Wheezing, coughing, and pathetic, break-your-heart, "Mommy" cries. I probably went a little overboard when I called a respiration therapist and reported the facts. She might have found it a bit odd that a parent could describe her son's breathing problems with scarcely any emotion attached. She ended up supplying the emotion as she vividly described what what was going on with Sam's lungs and how we need to respond. Bottom line, we're on a regiment of using a nebulizer every 4 hours for the next little bit. This includes the night--which actually is no big deal since we're up at least that amount anyway. Thankfully, Riley has 24-hour-on-call sleep/pulmonology doctors that I can call with questions without feeling like a bother.

I feel so bad for the little guy. These past few nights he's been a little honey. Just so sad.

We head back to Riley next Friday for the results of the sleep study as well as next steps. (And yes, it's killing me to know that he results are in and just sitting in his file. And yes, I'm calling every day to see if the doctor has looked at them and/or whether or not there is a cancellation so we can go sooner.)

In addition to praying for Sam's health, we're needing prayer for the rest of the family as well. Being up regularly with Sam means any cold I catch just lingers [insert Cranberries song here]. Also, I'm preaching at a two week youth camp in Iowa in the middle of June with both kids. I'm really looking forward to the camp, but am experiencing some anxiety at the thought of preaching on so little sleep. We're still praying/hunting for someone to travel with us. Thanks for joining us in prayer.

Wednesday, May 25, 2011

The Green-Eyed Cookie Monster

Me: "Guess what, Sam. I have something special for us to share!"
Sam: "What is it?"
Me: "I will tell you in a minute but it's something we have to share, okay?"
Sam: "Okay."
Me: "It's a chocolate chip cookie!"
Sam: "Yea! I don't want to share."
Me: "Sam, there's only one cookie so we need to share it."
Sam: "But I don't want to share it."
Me: "Well if you're not willing to share than neither of us will eat the cookie.
Sam: "But it's hard to share."
Me: "It is hard to share. But both of us want the cookie so we will need to share."
Sam: "But I don't know how to share."
Me: "Well this will be good practice."
Sam: "I know! We can share the cookie! I will have the really big part and you can have the very small part."
Me: "No, I would like to split it evenly."
Sam: "I will share the really little part with you."
Me: "Sam, when I was a little girl, Grammie taught me something about sharing."
Sam: "What was it?"
Me: "Grammie said that if I ever have a cookie and I have a friend near by, I should break it in half and offer them the bigger piece."
Sam: "Okay. So you can break it in half and I'll have the bigger piece."

Alright, Mother. Where do I go from here?

When in Doubt Bribe the Doctors

On the ride home from our first failed attempt at a sleep study, a very sleepy boy called from the backseat, "Next time let's bring the doctors some food." That's my boy. When in doubt, go with a bribe. On the drive to the second sleep study Sam yelled,"We have to bring them food!" So we pulled over and bought a box of cookies. This boy knows how to woo people.

The woo-ing continued when he showed his new eagle to one of the technicians.

"This is my bald eagle," Sam said.

"What's his name?" The technician asked.

"What's your name?" Sam asked.

"Josh."

"That's my eagle's name, too. Josh." Sam replied with a grin.

When we were leaving the sleep study, Deanna, the amazing respiration therapist pulled me aside and said, "After talking with you the other day I assumed Sam would be a holy terror. But he wasn't at all. He's a typical three-year-old--and very sweet." I had called Deanna a few days earlier for advice since the last study didn't go so well. I think this call prompted them to pair their most experienced people with Sam. I'm glad everyone planned for the worst.  

I wish I could say that we're full of hope and peace now that we've got the sleep study under our belts. Unfortunately that's not the case. Last night was our hardest evening yet. You'd think it would be mitigated by the thought of answers potentially coming our way in a week or so. But it wasn't. It was rough. Just flat out rough. We started the bedtime routine at 6:30. Sam finally fell asleep at 10. It's not that he's not tired. He had only slept six hours the night before and he was exhausted during the day--difficulty walking in a straight line, briefly falling asleep at an awkward angle, half upside-down on the couch. "I'm so tired," he said as we walked to his room at bedtime. Nevertheless, those little eyes stayed open until 10 pm. I think the word most uttered in our home right now is "weary".

(I wanted to mention that one of the reasons why I'm blogging on this subject so much is because I've so appreciated finding other people's blogs who have had similar experiences. I'm hoping to add our stories to the mix in case it can help someone else in their own sleep journey.)

Tuesday, May 24, 2011

It's Done--He Did Great

Leaving hospital in 30 minutes or so. He made it! Results in about a week. Thanks for prayers. Time for bed for me.

Monday, May 23, 2011

Update Two: Still Going Strong!

Update One Here

Whew! We survived our first night waking/night terror. Sam was awake and agitated for about 20 minutes calling for both Mommy and Daddy. He was so sweet. So sad but trying to follow directions. He barely attempted to pull off the nasal cannula even though I know it was bothering him.

At one point he said, "I want this off so I can drink better." Our saint of a nurse got him a straw and he immediately calmed down, gulped about half a cup of water, and fell asleep.

We now have 3 hours of sleep data. They generally like to have between 4 and 6. We're getting so close!

I managed to get about 30 minutes of sleep myself. Sam is not exactly a sound sleeper and I find myself jolting upright with every sigh, jerk, and loud snore. I know that if he pulls out some of these wires the lights will come on, the nurse will come in and we'll have to begin again. So I jump to his side and intercept the sleepily flailing arms. Being awake is no problem knowing that I have a husband to drive us home and an amazing babysitter to help out tomorrow while we all try to get some rest.

Thank you for your prayers. As sad as I was to see Sam awake and struggling, I'm glad that they could see what a "normal" sleep night looks like for this little guy.

Sleep Study: Update 1

Wow. This has gone much, much better than I had anticipated! It's 11:03 pm and Sam is asleep with all wires attached. That means sleep data is officially being recorded as I type! We never made it this far with the first study. 

We've got an amazing respiration therapist who indulged us by allowing us to use our own colorful tape and put stickers on every one of our limbs. She even pulled our extra cannulas for all of us to insert in our noses when that dreaded time came. Speaking of which, both John and I stayed in the room. I had to hold his arms for a good 60 seconds while he cried, but she got it in and secured. We then took large stickers and covered Dora's and Diego's faces and pretended they were yelling at Sam in a muffled voice. Kinda sick now that I think about it but it had Sam laughing.

It took an hour and a half for him to fall asleep. That was an hour and a half of story-telling. Often times, when I start to slowly list the names of all the animals I can think of Sam is lulled into sleep. I tried that trick tonight: "Elephant....Zebra....Alligator....." and then I made my first mistake. "Wolf....Dingo...." At which point Sam's droopy eyes flew open and he yelled, "THE DINGO ATE MY BABY!"

That's my boy.

Thank you for you prayers. I am incredible encouraged and hopeful. If you're up, I'd appreciate prayers that Sam stays asleep and if/when he wakes up he won't panic and start pulling out wires.

Thank you, Jesus, for this night.

 Sam with his zebra-deer

Turning into a bald eagle.

 Killing time with "Harold and the Purple Crayon" DVD.
 Ah, the nasal cannula.
 Putting stickers on his new friend.
Ready for bed!

Never, Ever Argue Animals with Sam

For the past two weeks Sam has been begging for a "zebra deer". I've been assuming that it was a made-up animal much like "the great gazoo" he keeps talking about.

Today on the way to Meijer, Sam asked if we could buy a zebra-deer for the hospital tonight. Our conversation went something like this:

Sam: "Can we buy a zebra-deer for the hospital tonight?"
Me: "Sorry, Sam. There's no such thing as a zebra-deer."
Sam: "But can we buy one at Meijer?"
Me: "Sam, they don't sell zebra-deer at Meijer."
Sam: "Yes they do."
Me: "No they don't." (Because it's really smart to argue with a three-year-old.)
(Pause)
Sam: "If Meijer has a zebra-deer will you buy it for me?"
Me: "Yes, Sam. If Meijer has a zebra-deer I will buy it for you."

I know better than to argue animals with Sam. Thanks a lot, Webkinz.

Sidenote: I picked up the numbing cream that I hope to put around Sam's nose tonight. I practiced on myself. It works. It works really well.

Riley in 7 Hours: Advice Solicited

A few of you have tentatively offered advice. Please know that all advice is solicited! We will not be offended in the least by what you might fear is "interference." And I've got one question in particular I'd like your advice on (in fact, you can vote in the above poll--that's not to say that I'll go with the most popular option--but I am curious to know if there is an overwhelming majority for one answer or the other):

Should I stay in the room with Sam when they're putting in the nasal cannula (it doesn't hurt, it's just a strange feeling), or should I leave? Initially I thought I should stay, but after talking with a respiration therapist I'm not so sure. I called her the other day and asked if there was anything that could make the nasal cannula easier for a 3-year-old. She said "No," and went on to explain that I would need to decide whether or not I wanted to be in the room during that moment.

Originally I assumed I would stay, but now I'm not so sure. She said it can be confusing for a kid to see his parent standing there not coming to his rescue when he's crying. She said sometimes it's easier for the parent to be out of the room and come in immediately afterwards in order to comfort the child without looking like the parent was in cahoots with the doctors.

I think I'm still leaning towards staying--mostly because Sam is a Mama's Boy and I imagine he'll be even more panic-stricken if I leave. But I thought I would post the question to you readers in case you have any advice. So, any advice?

I also wanted to let you know that we discovered the sleep medicine Sam had recently started was not agreeing well with him. I've dubbed it Sam's "crazy medicine". The few times he took it he was wide-eyed, swatting at things and mumbling three hours after ingestion. We stopped the medicine two nights ago and are back to "normal" (normal meaning multiple wake ups, occasional night terrors, but no craziness).

We've got seven hours before we leave for Riley. This sleep study is taking place at a different Riley hospital--not the one we went to originally. This one is a bit closer to our home and will look different (different room and staff) from the first one we went to. I thought this would be helpful for both mother and son. My sister is watching Clara so John can come with us and drive us home in the morning (please, Lord, let it be the morning and not the middle of the night again). I hired a babysitter this morning so I could sleep in until 10 am in preparation of being awake for most of the study (someone needs to keep vigil to keep him from thrashing in his sleep and pulling out wires).

Sam has been hinting that a bald eagle would be nice for tonight's hospital stay. Little does he know I purchased one last week when I remembered him laughing at himself in the mirror with all the wires while announcing, "I look like a bald eagle!" He didn't, by the way, but whatever makes him happy.

We've had enough bad nights at home in order to have the resolve that we will do whatever we need to do to make this study work. One bad night at the hospital is worth the hope of a multitude of good nights at home for both our sake and Sam's sake.

Please pray for our little boy this evening.

Saturday, May 21, 2011

The Good, the Bad, and the Ugly

THE GOOD:

We're currently in sunny Princeton, New Jersey for John's graduation. I'm looking forward to sitting in the University Chapel and cheering obnoxiously when his name is called.

THE BAD:

I didn't know Sam's sleep situation could get worse. It did. Sleeping in a hotel together meant that I could observe him off and on throughout the night (mostly "on" last night). Something is going on with this poor boy. Last night he was swatting at imaginary bugs, jerking his limbs, and mumbling incoherently. Everyone is tired this morning. I've gone ahead and sent out an "SOS" to some babysitters for extra help this week. The word we keep using is "weary". I am resolved as much as possible to get through this sleep study so we can figure out what's going on in this poor boy's body. Monday cannot come fast enough.

THE UGLY:

Despite his lack of sleep, Sam's managed to have a good and dirty old time with his cousin, Dawson.

Tuesday, May 17, 2011

Sleep Study Moved Up AGAIN!

Alright! We're movin' up! There was a cancellation and now we're going in Monday, May 23rd at 8 pm! Thanks, Lord!

Monday, May 16, 2011

Sleep Study Moved Up!

Sam's sleep study date has been moved up to May 31st! Yes, I really did just use an exclamation point at the end of a sentence containing the words "sleep study" and "moved up". As much as I don't want to go through this again, I'm eager for Sam to get a full night's rest (me, too). The sooner the better. And yes, I've now talked with numerous doctors and read various articles all indicating this is a necessary step for us to take.

We are prepping like maniacs over here. We're going hard core. I went to a medical supply store today  and purchased the three different types of surgical tape they use during the study. We're going to practice at home (how about it, John?). I got stickers with which to decorate said tape. I'm going to dig up my old earphones that no longer work and use the wire to tape around our faces. Tomorrow I get to pick up a prescription to buy a $1.25 nasal cannula...that's gonna be a fun one to practice with. And I'm waiting to hear back whether or not my doctor will prescribe me numbing topical cream to give Sam a "mustache" so that after he falls asleep we can fit him with the nasal cannula without him waking up. If my doctor won't I will be searching the black market and bribing all my nursing friends (I'm talking about you, Liz).

I'm also going to acquire a copy of "An American Tale". Tonight at bedtime Sam requested I sing, "There are no cats in America," as his lullaby. Whatever makes you sleep, Kid.

We've got two weeks to prep. And no doubt in those two weeks Sam will request another obscure animal to comfort him during his stay at Riley. Can't wait to track it down.

By the way, if anyone has any advice or suggestions, feel free to share. You will not be stepping on our toes!

Thanks for your prayers

Easter











Friday, May 13, 2011

Riley Appointment: Manna, Manna, Manna

Today was Sam's appointment with an ENT to discuss sleep issues. In my head I imagined the doctor looking at Sam's adnoids, saying, "Wow, these are so big I'd like to take them out right now." And following the surgery we'd head home where he'd fall asleep within minutes and sleep all night long. That was the scenario playing out in my head. Sometimes my mind is a very nice place to be.

That wasn't what happened. Instead we got:

1) Uncertainty whether or not his adenoids are truly enlarged
2) A second strong confirmation that a sleep study is needed

Sam fell asleep on the way home. During that silence my mind reverted to the questions from a few weeks ago: "Maybe this isn't related to his breathing. Maybe I'm just a pansy of a parent--the kind that always buys McDonald's Happy Meals and interrupts playground fights too quickly. Maybe this is all my fault." Sometimes my mind is a very frightening place to be.

So I called my mom and spilled. And she listened. And she simply said wonderfully empathetic statements like, "I can hear the sadness in your voice." And I hung up and felt a little bit better.

I felt even better when a few minutes later Sam started snoring like a morbidly obese old man. My parenting did not result in that snoring. I called my mom again and put her on speaker phone to listen to my son snore.

After a two hour bedtime ordeal with Sam I picked up my phone and called the sleep lab (being a sleep lab their office hours are a bit different). The next available appointment is June 16th. June 16th is smack dab in the middle of a youth camp I'm preaching at...with both kids in tow. Not only did I turn down the offered study date, I then had a mini-panic attack at the thought of going another month without sleep AND taking my sleep-deprived family to camp (speaking of which if there are any Iowa readers who want to make some extra cash and babysit just let me know. They're fun kids. Really great sleepers. No sleep problems at all. Really. Cross my heart.) So now we're looking at a sleep study for the last week in June (speaking of which, I'm praying for a cancellation that will allow us to be seen earlier).

Once again Jesus Calling to the rescue. In the midst of my panic I remembered the words I read last night: "Most of the situations that entangle your mind are not today's concerns; you have borrowed them from tomorrow" (138). John and I have worked hard to live debt free with our finances. I think the next step is for me to worry debt-free. I don't want to borrow what I don't yet possess. No worrying about tomorrow allowed. The interest is too steep.

Today. Today. Today. Or as my friend put it, Manna. Manna. Manna.

Oh yeah, and I think Sam has pink eye, but I'll worry about that tomorrow.

Wednesday, May 11, 2011

Slaying my Protestant Work Ethic: Or the Time I Hired a Housekeeper

A week ago I heard one of those "game-changer" sermons. It was on simplicity and cultivating a life that "fits" ("Simplicity: The Elegant Life" Steve DeNeff). Simplicity in life is not about whittling down my to-do list until there's nothing left; rather it is about cultivating a well-integrated, sustainable life. This was a timely word.

Up until this point, John and I had been operating in crisis mode, looking for shots-in-the-arm, quick-fix, silver-bullet type solutions to the sleep problems in our house. We were exploring options like hiring a babysitter to spend the night and help soothe Sam back to sleep. And while something like this might be momentarily rest-filled for John and me, it didn't result in any kind of sustainable rest. A full-night's sleep might feel good for 18 hours or so, but the next night we would be right back where we started.

Pastor Steve's sermon prompted me to explore ways of incorporating sustainable rest in our house. So I made a list. I'm a list person. I listed out all of the things I'm currently doing each day to see if I could find some sustainable rest amidst my daily activities. Surely there were things I could do, people I could hire, activities I could streamline to make my life more integrated and restful. Here's a peek at my list of "big" things I do.

THINGS I DO:
Care for two kids
Write a dissertation
Cook
Spend time with my husband
Clean the house

I then took my list and asked myself whether or not there were things I could hire out. Here were my thoughts on these tasks:


Care for two kids: This is one of my favorite things. And truth be told, I actually like being the one to get up with Sam at 2 am. If he's having a rough time I want to be there. I currently have a wonderful babysitter that comes so I can work and I'm not sure I want to add more babysitting hours at this time. Which leads me to the next thing I do: dissertate.

Write a dissertation: Hmmm, I probably can't farm this out. And please don't hate me, but I really, really like writing. Things may change, but at this point working on my dissertation is a source of joy for me. I did, however realize I could hire someone to transcribe my interviews. I can buy six hours of my time by hiring someone to type (thanks, Ethan). And voila--more space to sleep/rest during my day

Cook: Days when I have the time and energy I like to cook. There are days, however, where this is an effort. And I often feel guilty when I pull out of a frozen box of chicken nuggets. So I'm going to compromise. Tomorrow when I'm in Indy for an appointment I'll swing by Trader Joes and Whole Foods and stock up on a few freezer meals I can pull out in a pinch that won't reek havoc on my guilt complex.

Spend time with my husband: John has been my sanity. My partner. My bud. Time alone with John rejuvenates me. So we've brought back the weekly date night. And we've found an amazing, talented babysitter who has the patience to sit with Sam for two hours if he's having a rough time falling asleep. Having one night a week when we don't have to put kids to bed is an indulgence. And it's worth it.

Clean the house: Here's the biggie. I value a clean house. I really, really value a clean house--especially now that I know every speck of dust makes things tougher for Sam. But I've come to the conclusion that I don't have to be the one doing the cleaning (John's very convenient but very severe allergy to dust means this is one of the tasks we can't go 50/50 on). So I bought a one month subscription to Care.com and found a housekeeper--someone to come twice a month while we're in this sleepless season. Because if I have to choose between cleaning the bathroom for half an hour or squeezing in a power nap I'm going to choose the power nap. Because the power nap will give me what I need to care for kids, dissertate, etc.

Are you catching my defensiveness? Are you seeing all of my justifications? Did you notice how long it took me in this post to admit that I've hired a housekeeper? I have my Protestant Work Ethic to thank for that. I have hired a housekeeper. There. I've said it. I now pay someone to clean my bathtub. At least for this season of life.  Ooooh, there are my disclaimers again!

You may notice how often the word "hire" or "bought" was mentioned in this post. The changes we're making cost money. And we're at peace with that. A year ago John and I read The Three Big Questions for a Frantic Family and have come to the conclusion that our current family battle cry is "Health!" This is our top priority. More than buying a second car. More than purchasing a new kitchen table. More than buying sod for the backyard. It's worth it to us to invest our money in practices of sustainable rest. And so far it feels like money well spent. 

I cannot buy sleep, but I can buy rest. And so far it's feeling good!

Monday, May 09, 2011

Updates and Ramblings

(Quick update: Spoke with the Riley doctors today--while they would like to see Sam attempt another sleep study, they said they will hold off scheduling until we meet with an ENT this Friday. The hope is that this ENT will be able to figure out enough details concerning Sam's adenoids and tonsils that he can comfortably do surgery without a sleep study (there can be serious complications in removing tonsils if apnea is an issue). We're praying for clear direction this Friday.)

Not long ago I mentioned how much I'm enjoying Sarah Young's Jesus Calling. I find myself continually coming back to the entry on April 30:

"When some basic need is lacking--time, energy, money--consider yourself blessed. Your very lack is an opportunity to latch onto me in unashamed dependence."

When I read these first two sentences I simultaneously cringed and rolled my eyes. It was a bit too Pollyanna-ish and didn't seem to take seriously the problem of pain. But then I read on...

"When you begin your day with inadequate resources, you must concentrate your efforts on the present moment. This is where you are meant to live--in the present."


My days have been beginning with inadequate resources lately. It's been a physical and mental fatigue that has settled deep within my bones. In many ways the only way I can function is to be completely focused on the present moment. Following a recipe requires my complete attention. Conversing with John requires my complete attention or I will literally lose my thought part way through a sentence. Changing a diaper requires my complete attention.

As a self-confessed multi-tasker task-switcher this has been an adjustment for me. I'm grateful for Young's words because she is revealing to me how this sleep situation (or lack thereof) is pulling out of me something that I truly value: Being. Completely. Present. To. The. Present.

I desire to carry this concentration on the present along with me regardless of what my sleep patterns look like. While I do not enjoy my circumstances, nor do I want them to persist, this is the kind of person I want to be at all times: one who is fully living in the present.

I need to pause for a moment and acknowledge something that's been gnawing at me since I first posted about Sam's sleeping problem (which has quickly escalated into Sam's breathing problems). I find myself struggling to know how to talk about pain. I have a hard time knowing how to express my own difficulties knowing that every thing is relative. I teeter between feeling sorry for myself and then feeling enormously grateful for all we have.


I walk into Riley and see children unable to walk. We had a delightful conversation with a beautiful 16-year-old girl with cystic fibrosis waiting to see the Sam doctor Sam will see. We see children without the ability to talk, hear, see. We see children who appear to be perfectly whole yet are living with a death sentence hanging over their heads. 

Things started getting really rough with Sam in March. He was waking up four or five times a night, often screaming. Often crying for no apparent reason for an hour or two. It felt brutal. And yet, multiple times, as I walked to his room in the middle of the night I was reminded of the sobering fact that many, many friends and acquaintances would give all they had to be able to comfort a child in the other room.

And yet this is our "present". And I'm trying to figure out what it means to live fully in our present in a way that acknowledges the deep-seeded suffering of others without diminishing our own difficulties. 

Despite my desire to live fully in the present, I do regularly pray a prayer for the future: "Come, Lord Jesus, Come." 

Sunday, May 08, 2011

Pre-Riley Fun

Thanks for all the prayers and support this weekend. I was a bit discouraged yesterday feeling like I had somehow "failed" this sleep study (even though I know we weren't exactly set up to succeed). I've been feeling bad that Sam was put through all the wires and electrodes and we were still unable to come away with clear data. I'm eager to speak with his doctor tomorrow and figure out where to go from here.

We started asthma treatments and nebulizers last week which has made a big difference in our night times. The past few nights Sam has only gotten up twice a night (which is a major improvement from getting up every hour). Bed time is still a struggle (he took two hours to fall asleep tonight), and I still find myself nodding off during the day, but it's a start. Here's a pic of Sam in his "lion mask".

Just to show that we actually had a fun evening the night we went in I've included a few pictures. Sam was enamoured with the "big city".

"What a huge building!" he yelled when we got out of the car (it was five stories high).

"I SEE A TAXI!" Obviously he doesn't remember NYC.








2:30 am Sam happy to be free from wires.

Saturday, May 07, 2011

Sleep antics

Some of the things that have come out of Sam's mouth at bedtime this past week have cracked us up.

Wednesday night I was in charge of putting Sam to bed (we alternate because it can be an ordeal). He was all snuggled in his covers, eyes closed, when he announced he needed to use the potty. After taking a trip to the bathroom, Sam waltzed back into his room, stood by his bed and said, "Mommy, these are your choices," and then holding up a finger one at a time Sam said, "Do you want to play with animals, read a book, watch a movie, or go straight to bed."

Somewhat amused I played along and said, "Go straight to bed."

"Nope," he said. "Sorry, we already did that. How about a movie?"

Thursday night was John's turn. Sam was doing all that he could to convince John that he should be allowed to come find me for yet another "Hug, kiss, tickle." John was firm. "Sammy, Mommy already said goodnight to you."

Then Sam got an idea. "Can we have a com...a com...a com-pli...a compli-ment? Can we have a compliment?

"Do you mean a compromise?" John asked.

"Yes, a compromise," Sam said.

So they did. John made a proposal that Sam saw fit to accept and everyone went to bed happy (until 12:30 am when Jesus nudged Sam out of bed).

Last Night...


(Here's the original post concerning Sam's struggle with sleep).


Okay, the next post won't be so heavy since despite the difficulty of the sleep study there were lots of laughs and smiles beforehand. But last night was rough. Really, really rough. Thank you so much for your prayers. It was so encouraging to get messages from people at 2 am, 3 am, etc. just saying they were praying. It was nice to not feel alone.


I've been a bit teary today as I think about last night. At the risk of sounding melodramatic it was somewhat traumatic. I do want to say that Sam was incredible. If someone would have told me that my 3-year-old would sit still for 90 minutes while he was being hooked up with various electrodes/wires I would have said it was impossible. Sam brought his 'A' game and I was so proud of him. I didn't take any pictures of him with his gear, mostly because he was so tired and scared after it was all on I was using both hands to cuddle and sooth him. As he drifted off to sleep he kept saying, "I'm feeling scared, Mommy. Why can't I rest at home?" I am, however, including a picture of another child with the gear Sam had on (he had wires coming from his toes, shins, stomach, chest, chin, ears, cheeks, nose, corner of his eyes, and multiple wires from his head. He had a thick gathering of wires that was about 2 inches in diameter that he was supposed to sleep on. 





(THIS IS NOT SAM--This is just what Sam looked like, except he had ace bandages wrapped all around his head/cheeks/chin, and without the restraints on his arms--I opted to hold him during a rough patch.)


I'm disappointed that we could not complete the study, though I have no doubts we made the right decision to stop. If we're convinced that it's absolutely necessary we'll try it again, though we'll do things a bit differently.


In fact, just in case someone stumbles upon this blog and needs to take their child for a study, these are the things I wish we had known in advance:



Application of wires/electrodes: While I knew Sam would be hooked up to various wires and machines, I had no idea it would take 60-90 minutes for him to be set up. This is a long time for a 3-year-old to sit still and had I been aware of the length of this set up I would have brought a movie for him to watch. Furthermore, had I had access to this information I would have scheduled a sleep study for earlier in the day. The way it worked out, my 3-year-old was not in a position to fall asleep until close to 11 pm. It would have also been helpful to know in advance that there would be a beeping machine. This kind of knowledge would have been helpful so Sam could know what to expect in advance. The worst part was the nasal cannula that was placed in his nose. In fact, this was the reason why we ended the study--because we couldn't get it in place without Sam collapsing in tears and coming close to throwing up. I was surprised the cannula was made of hard plastic since there are more rubbery ones available.

After the study: While I knew how long the study would last, I did not have any information ahead of time about what would happen after the study. It wasn't until close to midnight that I learned we would need to leave his room sometime between 5 and 6 am.  I didn't realize how little sleep I would be getting. I had a few panicky moments at the thought of driving the 90-minute drive home on little to no sleep. Had I been aware of this information I would have booked a hotel room nearby or arranged for another ride home. (We ended up leaving the hospital at 2:30 am. Thanks to my brother, Paul, for talking on the phone with me to keep me awake).

Restraints: At one point I was asked if I wanted to use restraints. I declined. Later on, another technician came to me with the same question, only she spent quite a bit of time explaining why they might be helpful. Finally, I asked if I could see the restraints she was talking about. When she showed me, I was relieved and quickly agreed--it was just a simply sponge like cloth that would keep him from bending his elbows. My anxious mind had imagined a straight jacket of sorts. Had this information been clearer to me earlier we might have had an easier time making decisions. We tried the restraints for about 10 seconds before I realized I was more comfortable holding him.

Ending a study: I agonized over whether or not to end the study. I realized I did not have all of the medical information I needed from the doctor. It was unclear to me how important this study was. If I cancelled now would we have to attempt it again? What was at stake with this study? Could Sam have his adenoids removed without a sleep study? Was I somehow endangering my son to quit the study? I wish I would have had access to a doctor who was familiar with Sam's information who could help advise me.

What to wear: It would have been helpful had we been told to wear old pajamas. I didn't know until we got to the study that some of the substances used can ruin clothing. This is just a small thing, but it might have been helpful.


Again, thanks for your support. My heart was aching for him last night and it was so heartening to know we were being lifted up in prayer.




Thanks

(Here's the original post concerning Sam's struggle for those of you that are just joining us).

I'm overwhelmed by all the kind messages of support. Thank you so much.

I just woke up and with a bit more hindsight am still feeling good about our decision to stop the study. I'll explain more later. In the meantime, we have another appointment set for next week with an ENT. He may have some ideas about those adenoids that won't require a sleep study.

Oh yeah, and we found a yak. Smile.

Home

Arrived home at 4 am safe and sound. Sam is in his bed. I'm ready for sleep myself.

Disappointed we couldn't complete the study but confident we made the right choice to end it. After removing all of the wires from Sam's body (which in itself was an ordeal), Sam said in a small voice, "I'm starting to feel a little bit more happy."

Me too.

Thank you, thank you, thank you for your prayers. I did not feel alone!

Friday, May 06, 2011

Home

Ending the study early. I feel good about this decision. Headed home. More later.

Prayers, Please.

It's 1:056 am. If anyone is up right now I would covet your prayers. Sam is still resisting the nasal tubes and is absolutely terrified. Lot of tears.

He's asleep again and I need to decide whether or not to attempt to continue the study or just give up. Giving up means we won't have a clear picture of apnea nor a clear indication of how to proceed...and we might have to repeat the study a bit later anyway which means another grueling hour of getting connected to wires.

Continuing means we attempt once again to attach the nasal wire once he gets into a deeper sleep. Most likely he'll wake up crying again and I'm not sure my mother's heart could take it. Plus, it will mean I'll have been awake most of the night and I cannot fathom driving the hour and a half back to Marion in this state.

I really want what's best for Sam. And I just don't know what that is.

Do not worry about anything. Do not worry about anything. Do not worry about anything.

Attempt #3 for the Nose Tube

Okay, in about 5 minutes three of us are going to try to insert tubes up Sam's nostrils without him waking up.





....Yeah, I just reread that sentence. I'm not sure that's possible.

Better Stanley than Dwight...I Guess

Well, I met my first curmudgeon at Riley. I knew that there had to be someone somewhere. This one had the exact temperament of Stanley from "The Office." Not exactly the type of guy you want spending an hour with your child hooking him up to wires. Very few smiles. Very little patience. After an hour of staying still for the wires, Sam began to cry when "Stanley" put the tubes in his nostrils.

"I don't want it. I want to go home!" He said as he batted at Stanley's arms.

"Ma'am, he's got to do this or we can't do the study." Stanley said, exasperated.

"Do you have any ideas on how to make this easier for him?" I asked, thinking to myself, "He does this for a living surely he has a trick or two."

"We could tie down his arms on either side so he doesn't struggle." He wasn't joking.

"Would you mind leaving the room for a minute so I can be alone with Sam?" Was my response. 

He left.

After much soothing (and the aforementioned promised trip to Chuck E. Cheese) I said to Sam (and the camera that was recording our every move), "Sam, would you like it better if a woman came in to help you next?" 

"Yes," he hiccuped.

A few minutes passed. The door opened, and in walked Carlotta who was all sweetness and helped Sam get settled down.

That was my mixed attempt at passive aggressive assertiveness. Stating what it was I wanted for my child without having it say it to anyone's face.  

Keep Praying!

Wow, this is tough. Sam finally fell asleep around 10:45 pm. He was amazing. A real trooper. He stayed still for over an hour while they attached wires to his entire body. I was amazed.

Here's where we need prayer: he freaked out when they tried to put a tube up his nose (naturally). They can't do the study until it's in place. I'm currently waiting for someone to come in and attempt to insert it while he's asleep. Please pray that he won't pull off the wires if/when he wakes up in the middle of the night. I've already had to bribe him with a trip to Chuck E. Cheese. Got that, John? We're going to Chuck E. Cheese tomorrow.

Right before he drifted off Sam whispered to me, "I'm feeling a little bit scared." It broke my heart.

I'll update more in a bit.

8 Hours Until Riley--No Yak Yet

One of the saving graces of the craziness these past few months have held has been the things coming out of Sam's mouth. Last week, when we thought it was still a horse, Sam went to bed very cheerfully and announced, "I am going to always say 'please' and 'thank you', and if I wake up tonight I will not get out of bed. I will just talk with Jesus."

Apparently Jesus told Sam to wake his mother up. Every hour, on the hour that night.

We've got 8 hours until we're supposed to report to Riley. They asked me to please prepare Sam for the wires and tubes that he'll have to be connected to. So I've been showing him pictures and talking about how silly he'll look. Sam's response up to this point has been a very simple, "Nope. I'm not going to do that." No fussing. No whining. Just a firm, adamant, "Nope."

So I pulled out a bribe. "Sam, when we go to Indianapolis, we will stop at a big toy store and I'll let you pick out a stuffed animal you can sleep with at the hospital!"

"Okay!" He said with enthusiasm. "I'm going to get a yak."

Pause.

"Sam, um, they might not have a yak."

"But they might," he said. "They might have a yak with big horns and lots of hair just like a person."

"They might, Sam, but they probably won't. You'll probably get to pick out a new animal instead."

Blank stare. Crickets chirp.

We spoke with my mom a bit later. Sam got on the phone and announced, "Mommy and I are going on a long date. We're going to go to Riley and I get to get a big red wagon that I get to ride in with all my stuff and my two new yaks."

Great. Now we're up to two yaks.

I did call a few places only to find they were yak-less. One woman said, "We're all out of yaks, but we do have a cow with large horns." I thanked her but didn't explain that this 3-year-old can tell the difference between yaks, moose, caribou, bulls, and mastodons.

While I have much sympathy for this little boy I am not going to kill myself looking for a yak. Plus I'm fairly certain he'll find something he loves here. Perhaps a zebra.

Thursday, May 05, 2011

Why Sam Doesn't Sleep



(This post is a bit long, so feel free to scroll down to “The Bottom Line” at the end of this post.)

Eight years ago I sat in a doctor’s office and was told, “When you hear hoof beats, it makes the most sense to assume its a horse, not a zebra. Only when you’ve ruled out the horses do you start the search for zebras.” He used this analogy to explain the importance of looking for the mundane diagnosis before the unusual diagnosis. Eight years later and this story is still fresh in my mind.

Last December Sam started having difficulty sleeping. From 4 months until 3-years-old Sam had been an excellent sleeper. 7 pm until 7 am with a long afternoon nap. The day he turned three it all began to change.

When Sam resisted bedtime, sometimes for up to two hours, we saw a “horse.” Surely this was normal considering all the changes in his life: new state, new house, new toddler bed, new sister, dropping the afternoon nap. Surely it was  a horse. And then Sam started waking up in the middle of the night. Multiple times during the night. Still we saw the horse.

Somewhere along the way our great little sleeper transformed into a kid who fell asleep at 9 pm and then woke up at: 10:30 pm, 12:15 am, 2-3:45 am, 5:15 am, and then got up for the day at 6:30 am. We followed a similar pattern every night. For weeks. And then months. And nothing worked. Some nights Sam would cry and scream for two hours at a time saying things like, “I want to go to sleep! I can’t stop whining.”

Trying to catch this evasive horse we went on a mission for a cure. We spoke with friends, sent out Facebook questions; I read every single parenting book I could get my hands on. We spoke with three different counselors. We spoke with doctors who gave us very kind smiles and said he would grow out of it.

With rare exception, March and April were a blur. I’m honestly not quite sure what I did during those two months. John would walk around bleary-eyed while friends jostled him, “That new baby keeping you up, huh?” Nope. The toddler.

In addition to the lack of sleep I underwent a crisis of confidence in parenting. I oscillated between thinking, “I’m just too lenient. I need to buckle down and ‘super nanny’ this kid.” Then the next night I would think, “Poor guy’s world has been shaken up so much lately. Maybe he just needs more one-on-one time with me.”

I made an appointment for Sam to see a new pediatrician. I was at a breaking point. This new doctor looked at the sleep journal I kept, saw my delirious son pendulum from jumping and flailing around the room to collapsing on the floor sobbing that he was tired. “You must be exhausted,” she said to me, prompting me to break down in tears.

She decided to refer us to Riley Children’s Hospital in Indianapolis. The conversation I had with the appointment scheduler felt like a gift from God:

Her: “Well, our next available is June 9.”
Me: “Okay.” (Fighting tears thinking I cannot go another month without sleep)
Her: “Wait! That one just got nabbed. These appointments go really quick. Now we’re looking at the middle of June.”
Me: (Now the tears are really flowing as I think about the two youth camps I’m preaching at this June.) Ma’am, would you mind checking one more time to see if there’s anything earlier?”
Her: “Okay, but there won’t—wait! Someone just canceled. How about in two days?”
Me: “Yes! Please! Can we please have that appointment?”
Her: “You’ll need to get a referral from your doctor first and I can’t guarantee this appointment will still be available.”
Me: “Ma’am, I’m desperate. I don’t care if I have to pay out of pocket. Would you be willing to please, please write our name down and I’ll fax a referral to you later?”

I don’t think I’ve ever begged as much as I did during this conversation. This wonderful woman took pity on me and yesterday Sam and I spent five hours at Riley meeting with wonderful doctors and undergoing numerous tests.

THE BOTTOM LINE:

We learned in these five hours that Sam has a pretty nasty case of asthma. Furthermore, his adenoids are massive and are most likely causing sleep apnea. The reason why Sam cannot sleep at night is because Sam cannot breath at night.

As soon as we heard this diagnosis, mystery after mystery concerning Sam’s health began to make sense (like all of Sam’s bouts with croup, and the time we rushed him to the ER because of the hundred purple spots on his chest only to be told, “Well, that’s normally a sign he’s not getting enough oxygen but his blood tests came back normal.” The diagnosis? A cold…with purple spots).

Last night we gave Sam his first breathing treatment and he didn’t wake up until 5:45 am. I can’t remember the last time he’s slept that long. I can’t remember the time I’ve slept that long.

We have a lot of lifestyle changes to make. We’ve been told that we need to give Sam a year for his little body and littler lungs to heal. No fragrances whatsoever in the house. No scented candles, no scented cleaning products, nothing. No being around sick kids. No preschool (they said to take a year off now so that when he’s four he’ll be ready to enter preschool and face the germs). Pretty much they want him in a bubble.

Tomorrow we will head back to Riley for a sleep study. Sam will be hooked up to monitors and machines and will have an ace bandage wrapped around his head to keep him from pulling out the wires (I can already tell this is gonna be loads of fun). They will monitor him to see how bad the apnea is and if they need to remove his tonsils as well.

So if you think about it, please pray for Sam tomorrow night (Friday) as he undergoes these tests. I’ll bring my camera and try to post along the way. Like I said, I’m sure it’ll be a barrel of laughs.

The hoofs have rounded the corner and now we know we’re looking at a zebra.





Tuesday, May 03, 2011

"Bonhoeffer and bin Laden: Why We Can't Rejoice" (Link to Andrew Zirschky's Thoughtful Article)

Here's an excerpt to Andrew Zirschky's thoughtful article concerning Bonhoeffer and bin Laden (I'm proud to call this guy "friend"--Andrew, that is, though being friends with Bonhoeffer would have been pretty cool):

In Ethics, Bonhoeffer argued for extraordinary situations in which none of the options available for action or inaction could avoid guilt, unrighteousness and sin. On such rare occasions, says Bonhoeffer, we may find ourselves in a place where we must not "decide simply between right and wrong and between good and evil, but between right and right and between wrong and wrong." [2] In those times, both action and inaction lead to evil.  The tragedy of our world is the evil into which we are drawn, even when we hope to remain aloof.  This is why we as Christians cry for divine salvation.  Human action is not enough to combat the evil that persists in our world and in our own hearts.  As one commentator on Bonhoeffer has said, "Tyrannicide is sinful even if it is the least sinful option remaining." [3]

Check out the rest here.


[1] Mark S. Brocker, "Bonhoeffer's Appeal for Ethical Humility" online athttp://www.elca.org/What-We-Believe/Social-Issues/Journal-of-Lutheran-Ethics/Issues/August-2003/Bonhoeffers-Appeal-for-Ethical-Humility.aspx
[2] Dietrich Bonhoeffer, Ethics (Fortress Press, 2005), 245.
[3] Eric Meyer, "Violence and Disciples: Bonhoeffer on Resistance and Responsibility," Regent College, unpublished paper, April 10, 2007. Accessed at: http://ericdarylmeyer.files.wordpress.com/2007/04/final-paper.doc

Monday, May 02, 2011

The One Book You Should Buy

January 3, 2011--Our bags were packed for Florida. We pulled out the scale and discovered our bag was four pounds overweight. "I'll bet I can find the extra four pounds," John declared. After a bit of rummaging John pulled out a book, "Do you really need to pack a hardback book for a four day trip?" He asked. "Yes," I replied with much resolve. The reason? John had pulled out Sarah Young's Jesus Calling, the book I have come to rely upon.

I love this book. Love it. When my mother gave it to me at Christmas I wondered if perhaps it was just another cheesy Christian daily devotional. It wasn't. I have been pleasantly surprised how seeped in Scripture this small book is. Each day holds Biblical reflections as well as what the author imagines Jesus might be saying to us. I am a fan of Oswald Chambers My Utmost for His Highest. Young's book may surpass Chambers for me for the time being.

I regularly find a phrase that sticks out to me that becomes my meditation for the day. "A mind preoccupied with planning pays homage to the idol of control."

This is not just a feel good devotional. Just last night I shared a passage with John and said, "If someone said this to my face I might punch them. But I can accept it here."

Now of course some days connect with me more than others, but for the most part, this book has done nothing but aid in my connection with God.

And I don't think it's just for women, but some of you men will have to let me know.

Check it out!