Running on Empty (posted 2/6/2011)

I wrote the following entry nearly a year ago, in March of 2010. It's just been sitting here. I now feel the need to post it for a couple of reasons. For one thing, it is a reminder to me of where we have come from, how far we have journeyed in the past year. We've come a long way, baby! And I need to record what we've been through with Ryleigh and her sleep disorder. Speaking of coming a long way, Ryleigh is no longer on iron drops AND she is sleeping soundly through the night almost every night. We have occasional very minor episodes when she is overtired, but other than that, this seems to be something we can now call part of our history. Things really have changed since I wrote this. Thank you, God!

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It's been a hard week. I feel like maybe there have been too many hard weeks over the past two years, but this week has been one of the worst. This is one of those posts that as I sit to write, I know may never see the light of cyberspace. I may just need to get this off my chest. Or maybe I need to release it and ask you to pray over it. *sigh*

I also feel like maybe I need to catch a few people up on what is going on in our world, so you can understand the context. I am 16 weeks pregnant with our third child. I have found this pregnancy to be the most exhausting thus far, probably because I am chasing two little ones around. I have also had a hard time sleeping, which obviously doesn't help. That has definitely been worse this time around.

I also feel like there is no relief, no respite from the day-to-day grind of juggling the girls and this pregnancy. Before we moved back to PA, I had friends who I didn't have to worry about owing something to. If I was ready to lose it, either one of them would bail me out and just take my kids for a few hours, or I could at least take the girls over for a change of scenery. And I would return the favor when it was needed. But no one was keeping score, no one worried about who owed who a few hours of babysitting or whatever. No one worried about whether the house had been cleaned within an hour of the other one coming over. You don't know how much I miss that.

Here in PA, I have really struggled to adapt to this new life of ours. A new life in which I am no longer employed outside the home, even part-time. A life where my day-to-day life is a very solitary one. A life that looks nothing like the one I imagined for myself. A life which seems to take far more from me than it gives back, a life that is draining my tank. I am very aware of where I get energy, and I have struggled to find those places here. Forget struggled, pretty much failed.

We have moved to PA, away from friends and support system, away from church home (although we have finally found a new place to call home), away from stable income, away from a home of our own. Our income is virtually non-existant (just ask Uncle Sam), our friends are few and often busy being connected other places, our church is still new, we have started our own business and are facing all of the uncertainty and emotional struggles that entails, and we are renting a house, which while nice, is far from our own. I think we must rate pretty poorly on the stress level scale.

But here's what made this week especially difficult for me. Our four-year-old daughter has struggled with sleep issues since she was about 18-24 months. We were told repeatedly by doctors that she would outgrow them. They were classified as Confusional Arousal. What this looked like in our world is that several times a week, Ryleigh would scream and cry for hours in the middle of the night, never waking up, but certainly keeping us awake. Sometimes she would thrash about, sometimes get up and walk into our room, but mostly just sit in bed and scream. And most of the time, there was nothing we could do to wake her up. Sometimes, taking her outside or running her feet under cold water helped. I wonder what our neighbors thought of all that screaming! Sometimes we could talk softly to her and rub her arms or legs to help her relax. Sometimes it helped. Sometimes nothing helped. And most of the time, Ryan would sit with her through these episodes. But don't think I was sleeping soundly in the next room.

Last summer, Ryan noticed that Ryleigh would stop breathing in the midst of these episodes. She would scream and cry and then lay down and not breath for 10-15 seconds. Then she would gasp for air, sit up, and start crying again. This time, we told the doctor we were no longer willing to believe she'd just outgrow it. We got an appointment with a specialist for November 2009. He listened and asked great questions, and we felt like we were finally going to get somewhere. He ordered an iron test and found Ryleigh had a ferritin deficiency. This is linked to Restless Leg Syndrome, and the doctor suspected that was triggering the Confusional Arousal. Sure enough, once she was on the iron drops, Ryleigh episodes almost completely disappeared. After three years of sleepless nights, you cannot imagine how good it felt to sleep and have peaceful nights. Perhaps you can imagine that we saw a dramatic improvement in Ryleigh's attitude and behavior, a change in her personality even, once she was no longer sleep-deprived.

We returned to the specialist in February and reported how happy we all were and how much better we were doing. He told us to stop the iron and see if Ryleigh could maintain healthy iron levels. I hesitated to follow orders, but also knew that too much iron is a bad thing. We cut Ryleigh's dosage in half to see how she would respond. She had a few minor episodes, maybe 10 minutes or so, no big deal. But we left it at that.

Back in November, the specialist had ordered a sleep study, but they couldn't schedule us until March. Ugh! A couple of weeks ago, with the sleep study finally approaching, we stopped the iron drops completely, so that we could feel like they'd get the most accurate assessment of what was going on. Boy, did they! This brings us to our week this week...

Ryleigh had horrible nights Sunday, Monday, and Tuesday nights leading up to the sleep study. I was sure this was not good, because usually, when she has a few bad nights in a row, she will then sleep good for a night or two because she is so worn out. But never fear, the sleep study was worse than I imagined it would be. Ryleigh was wired with more wires glued onto her scalp that I anticipated, sensors all over her face, chin, and legs, bands around her chest and stomach, and tubes in her nose to monitor oxygen and carbon dioxide. They recorded everything with a video camera and a microphone above the bed. And I got to sleep in the bed next to her. If you can call it sleep.

The bed was harder than hard, so pregnant Momma just could not get comfortable. I tossed and turned, even after Ryleigh somehow managed to doze off. Then the screaming started. I wasn't allowed to touch her or talk to her or console her, just lay in bed next to my baby and watch her scream. And with all the glue and wires, and her hair sticking up all over the place, she looked possessed or something. And of course, her fits were worse as she tried to fight all the wires. This just meant that the technicians had to come in repeatedly to untangle her and reconnect whichever sensors she had managed to undo. Sometimes, she just rolled over in her sleep one too many times and wrapped the wires around her neck. Really, I don't think I slept until at least 3 am. I know that after about four separate episodes, maybe more, I don't know, we both finally slept. And they had the nerve to wake us up at 6 am. First off, Ryleigh sleeps until 7:30, sometimes longer. Lately, so do I. When they came in, I just about burst into tears! We had just finally gotten some sleep, and they were kicking us out!

The one bright spot in my week was the next few hours. After we cleaned Ryleigh up as best we could, I took her to IHOP for a treat. I let her order whatever she wanted, which meant hot chocolate with a mountain of whipped cream on top, and the world's largest chocolate chip pancake with more whipped cream and chocolate chips on top of that. She was so happy! We had a sweet breakfast, no pun intended, together. Then we went home and showered. She stood under that water forever! She likes to stay in the shower for ridiculously long periods of time, but I told her she could this time. Every time I checked on her, she was still just standing there, glue suds still running down the drain. I finally told her she had to wash her hair, etc. or there wouldn't be any hot water left for me. After we were feeling a little bit fresher, we went to the mall to do some shopping. Mostly a good time together, but she always tires of shopping faster than I do. Though not by much this time!

My Personal Soundtrack

I've been finalizing my personal soundtrack. Your what??? My soundtrack might be better described as my personal psalms -- they are the songs that best express my heart and the journey it has been on for the past two years or so (or maybe my entire life). Some of them are the prayers that my heart has cried in my most vulnerable moments as God and I have wrestled with where He is leading me. Others are His sweet response whispered to my soul when I most needed to hear from Him. I want to share the list with you. It is my prayer you will find time to listen to some of these and that they will bless you, too!

Fingerprints of God by Steven Curtis Chapman
Come Thou Fount of Every Blessing recorded by Chris Joyner & Ben Lashey
Lord Move, Or Move Me by FFH
Your Hands by JJ Heller
Better Is One Day by Matt Redman
He Is by Mark Schultz
How He Loves by the David Crowder Band
What Do I Know of Holy by Addison Road
Fade Me Away by Graham Davis
Everything Glorious by the David Crowder Band
Amazing Grace (My Chains Are Gone) by Chris Tomlin
I Will Rise by Chris Tomlin
Blessed Be Your Name by Matt Redman
You're My Little Girl by Go Fish

I'd be happy to hear your thoughts or talk to you about any of my choices. It may seem a strange collection to some people, and some of these songs have better stories than others, but they have all touched me deeply. Blessings to you!

P.S. (Easter 2010) I'm adding another song to this list... The Hammer Holds by Bebo Norman.

God is Bigger than the Impossible Dream

So I've been contemplating this entry for a while. I apologize if this ends up being long; it's a couple of months worth of "stuff." Part of the delay was figuring out how to explain something that I am unable to discuss the details of and yet is a huge part of my story. It finally came together for me.

Have you ever prayed that prayer: "God, if this one thing would happen, life would be perfect. I know it's impossible, but...?" And did you believe the impossibility was bigger than God? Silly you. Silly me. During my time teaching in Fairfax County, I learned a lot. A lot of which I was unable to process and understand until I left. And I moved to PA with one impossibility on my mind. Ryan and I often talked about how great it would be, if only... (that's the part I can't talk about). But I really believed that the impossibility of that desire was just that... impossible. I never dreamed such an opportunity would ever come my way. (Yes, there are a few of you out there who helped me process this, so you do know what I'm talking about.)

But God is SO big. Just before Christmas and in the few weeks following, God showed me how big He really is. God made the impossible come true. The opportunity I thought would make life perfect presented itself. The door to my golden opportunity was wide open. And I hesitated. I did not walk right through. Surprised? I was. Surprised at myself. I talked to Ryan, to my family, to my closest friends, to the God who opened the door. I wondered why I even felt the need to think about it. I prayed for God to make the decision so clear. Ryan found an article at Nehemiah Ministries about golden opportunities. This really spoke to my heart, in so many ways. I continued to pray for a period of weeks. I finally came to a point where I made a decision. I am grateful for a dear friend who spoke major truth to me during our precious time together and helped me reach that point of knowing myself. "God, I am going to walk through this open door, unless you stop me." And I even dared to declare to Him the red flag I was hoping for. And again, I failed to trust in the greatness of my God. I declared the flag I hoped to see, but I assure you, I did not believe I would see it.

God answered my impossible prayer and then proceded to stop me from walking through the open door with the very thing I believed He could not do. It was a moment where God's singular answer was the answer to many questions all at once. (It has since created some additional questions, mostly about my sanity, but that's another story.)

So, while I am not at liberty to talk about the specifics of the open door (and they don't matter in terms of God's story), I can talk about God's answer and what this particular red flag looks like. This particular flag takes the form of nausea and exhaustion for several months and will result in an addition to our family come September. (And the flag was pink, not red.) This, too, was something I wasn't sure was possible, at least not at that very moment. And yet, here was my sign, clear as day. The sign that caused me to walk away from the open door. Completely at peace with walking away.

There is much work God still has to do with me. I still struggle daily with where God is leading me, with the big picture. But clearly, He is bigger than anything I am dealing with. He is big enough to do the impossible, and I am resting in that. God showed me that He truly does know me so intimately and the desires of my heart (He put them there), that He can and will provide for all my needs, and that it will all be OK. And if He can do this once, He can do it again, when I'm not so busy with my most important calling as a mom. But most importantly, God really taught me a lot about myself through the period of weeks between the opening of and the walking away from the door. I am grateful for the journey. And that nothing is impossible with God.

Your Hands

You ever notice how a song will find you over and over again when you most need to hear it? This song has echoed through my days recently, and its words, though simple, speak volumes. My life is not a disaster, there are people going through far worse than anything I have ever struggled with. But these words provide comfort wherever you are, wherever you've been. The only place to be is safe in His hands, because He is constant, unwavering, unshakable.

Over the last year and a half, I have struggled with lonliness and all the uncertainty of starting over at a time in life when I thought we would be settling in. And despite all my doubts, God has reassured me time and time again that He is indeed holding me in His hands, working out His plan, and loving me with a love only He is capable of. I just need to let go. Karen Owens wrote in her blog once about monkey bars... how the scary part isn't hanging on, it's letting go and falling. What am I hanging on to? What if I just let myself fall? I know where I'd land, so why am I afraid of letting go?

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That you would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the Earth
You healed the broken, lost, and hurt
I know you hate to see me cry
One day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still

Doubt

Pastor John has been talking about doubt the last few weeks. Do you doubt God? Have you ever? Can anyone who's walked this walk for very long say they've never doubted? Honestly? Not even a little bit? It's part of our humanity and our struggle for control, right?

So I was just thinking about this. Thinking about me and where I am on my journey. And I thought about my doubt. What do I doubt? I do not doubt that God is there, or even right here. I do not doubt that He sent His only Son to the Cross with me on His mind. I do not doubt my salvation and my eternal destination. I do not doubt that God has a plan. Yes, I sometimes question that plan, but I know He knows the big picture that I cannot see, and that in light of eternity, it must make sense.

But oh, I doubt. So what is it I doubt? That's the very question I ask myself. Well... There's a lot of things in my life right now that I wish were different than they are, and yet, I still believe God has me here for a reason. I do think I need an attitude adjustment, especially lately. I know I have much to be grateful for... my husband, two healthy little girls, life itself, food in my pantry (even if none of it seems to satisfy these days), a roof over my head (even if it's a mess beneath that roof), an amazing family (who only drives my crazy sometimes), friends (even if they sometimes seem so far away)... all the things that matter. I should be full of joy. And I hate that I'm not. I really hate my attitude. But some days, I'm just so tired, I don't feel like I can even think about adjusting it. Does that make any sense?

So I don't doubt there is a plan, but I think I doubt my role in it. Not that I have a role, but that I am fulfilling it, or doing so very well. I doubt myself. I look at all the ways I am failing to live up to what I think I should, or what I think my husband must expect of me, or what my friends might expect, or what Martha Stewart would expect. I look at amazing, godly women who have been through really tough stuff, really tough stuff, and yet walk with grace and joy I know I do not exude. What is my problem? My life isn't that bad. Is it exactly how I would have imagined it? No, probably not. But isn't awful, just lonely sometimes.

God, I know you have a plan, but I sure would appreciate being let in on it. I don't think this is all you have for me. What do you want to do with this life? Surely, there's more to it than washing and drying and folding laundry so it can get dirty and wet and wrinkled again, more than dishwashers being loaded and unloaded (be grateful I have a dishwasher), more than changing diapers I just changed five minutes ago (Ashtyn, are you ready for the potty?), more than sucking up goldfish crumbs for the umpteenth time, more than picking up toys for the millionth time (why do we have so many toys???), more than...

Remember that book we read as girls, "Are you there God? It's me Margaret?" Are you there God? Yeah, OK, there you are. What are we going to do today? Show me something new today. Help my unbelief. I do not doubt You or that You have a plan. I think I might be getting in the way. So I guess my prayer is once again, "Lord move, or move me." Move me. Out of Your way. And remove my doubt.

Secrets... Sweet Secrets

A blogging friend of mine mentioned a few weeks ago that we must have stuff going on since I've been so negligent in my blogging. She has no idea. Sometimes God does amazing things, and it's hard to process it, at least publicly, for a while. So, my friends, be patient. I keep the sweet secrets He is revealing to me, but not forever. I'm just trying to put all the pieces together.

God continues to remind me, and it's no secret, that He loves me more than I can imagine, even when I feel completely alone. He continues to remind me that it is all for a purpose and all under His control, even if I can't see it right now. And He will always provide for all of my needs. Even when I think what I need or want is actually an impossible desire. He is more than capable. Have a little faith, Amanda.

Sometimes one answer takes care of many questions. Thank you God, for so succintly answering so many of my questions. Granted, the answer brings more questions (mostly about my sanity), but I trust you will provide answers to those questions in due time.

Well, it's preschool pick-up time. Stay tuned, friends. It's only a matter of time. :)