Friday, February 25, 2011

Salt and Grease in Disguise

On Valentine's Day we went to a trendy Chinese chain restaurant. All four of us had a great time. As we chowed on mongolian beef and "Nu-nus" as Naomi calls Noodles, we were raving about how good it was. We just couldn't get enough. There was a little fried rice and nu-nus left for lunch the next day, so we boxed it up, ate our fortune cookies, and headed home. We walked into the kitchen and Mike said, "You know, for as tasty and good as that was, it's really just a bunch of salt and grease in disguise as trendy chinese food." This is as we both were incredibly thirsty, guzzling down water before turning in for the night.

Hmm. Salt and grease in disguise. There are so many disguises going through my mind, good disguised as bad, bad disguised as good, and lots of in between. This is prompting me to think about Matthew 10:16, "Be wise as serpents—and harmless as doves."

My "harmlessness" probably comes across as a dumb blonde at many times. I feel like I have this gift of looking completely inept and aloof, but yet I am very observant and can recall details and replay them to myself (and Mike) in detail, and then replay in more detail. I'm not sure this is the "harmlessness" that Jesus is talking about, or a gift for that matter. It often becomes detrimental as it tempts me to embrace anxiety and fear.

Now that "wisdom" aspect of the verse, I have to chalk that up to the one and only God. "For the LORD gives wisdom; from his mouth come knowledge and understanding; he stores up sound wisdom for the upright; He is a shield to those who walk in integrity, guarding the paths of justice and watching over the way of his saints (Christians)." Prov 2:6-8

We had several unexpected changes in events this week. Mike and I prayed before he left for work yesterday that "we would plan our day but the Lord would determine our steps." This I felt gave the perfect amount of accountability for me to actually plan things and reminded me to be totally fine if things did not turn out as planned. I have to trust that it is the Lord's will, better than I could have designed in the first place.

So, I am personally far from harmless, but hope to be. I am leaning on wisdom that is not my own, which I guess is a good first step. Then I am just reflecting and grateful at all the work God is doing. Shielding, guarding, watching, giving, determining, and storing up. He has SURELY shielded, guarded, watched, gave, and determined our family's path this week. I am humbled when I attempt to understand why.

Take a good look at that delicious chinese. Yum. At least Scripture is not in disguise when the understanding is orchestrated by the living God.

So have no fear of them, for nothing is covered that will not be revealed, or hidden that will not be known. What I tell you in the dark, say in the light, and what you hear whispered, proclaim on the housetops. And do not fear those who kill the body but cannot kill the soul. Rather fear him who can destroy both soul and body in hell. Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows. Matthew 10:26-31

Sunday, February 13, 2011

Down to 2 Mestinon

Physical update: As far as I understand, Mestinon is treating my symptoms (allowing me to swallow, talk, etc.) and the steroid is trying to stop my body from producing an antibody, and the antibody is causing all of these problems to begin with, but it has not been confirmed specifically what antibody it is. I have had a very busy weekend, and still only needed to take 2 Mestinon as of today, as opposed to 6 as of last weekend. So . . . hopefully this means the regimen is working. Yay!

Monday, February 7, 2011

Psalms for Real

Mike and I are systematically going through Psalms and Proverbs. On the 4th - read Psalm 4 & Proverb 4, etc. I am so grateful for these Psalms, especially that they re-direct me to the Lord. Here are some findings that spoke to me specifically.

Psalm 4
To the choirmaster: with stringed instruments. A Psalm of David.

4:1 Answer me when I call, O God of my righteousness!
You have given me relief when I was in distress.
Be gracious to me and hear my prayer!

2 O men, how long shall my honor be turned into shame?
How long will you love vain words and seek after lies?

Selah

3 But know that the Lord has set apart the godly for himself;
the Lord hears when I call to him.

4 Be angry, and do not sin;
ponder in your own hearts on your beds, and be silent. Selah

5 Offer right sacrifices,
and put your trust in the Lord.

6 There are many who say, “Who will show us some good?
Lift up the light of your face upon us, O Lord!”
7 You have put more joy in my heart
than they have when their grain and wine abound.

8 In peace I will both lie down and sleep;
for you alone, O Lord, make me dwell in safety.



Psalm 5
Lead Me in Your Righteousness
To the choirmaster: for the flutes. A Psalm of David.

5:1 Give ear to my words, O Lord;
consider my groaning
(one of our Bibles says "sighing," which I totally relate to).
2 Give attention to the sound of my cry,
my King and my God,
for to you do I pray.


7 But I, through the abundance of your steadfast love,
will enter your house.
I will bow down toward your holy temple
in the fear of you.
8 Lead me, O Lord, in your righteousness
because of my enemies;
make your way straight before me.


11 But let all who take refuge in you rejoice;
let them ever sing for joy,
and spread your protection over them,
that those who love your name may exult in you.
12 For you bless the righteous, O Lord;
you cover him with favor as with a shield.


==

The Lord has definitely met us in this trial, and is continuing to. He is answering prayers left and right and has not un-shielded us by any means. The one day I was alone last week, a specific answer to prayer was answered. My friend (and I'm sure others) had prayed for Naomi to be especially helpful during this trial. That day, she proceeded to change David's diaper (a gross one) and then fed him. She was thorough, careful, and attentive to her little brother throughout the day. God answers prayer!

Saturday was a wonderful day with the family. I did really well during the daytime hours, and Mike and I even pulled out Agricola, a crazily complex game we hadn't played in years. He won, which is sometimes better for me, because then he's in a great mood. Tonight he won't know what hit 'em. Boo-haha!

Yesterday I had an iced coffee and was able to drink through a straw, which I hadn't done since November. Yay!

Today I was finally able to go with Naomi to the play-school group at the library. It was refreshing to be there with the other moms, to be there for Naomi, and see her interact with the other kids. Especially her best friend. (Can you guess who?) It was kind of funny to have a nanny with me, but I definitely needed her and wouldn't have been able to go without her. She helped load the car and get everyone ready. I was able to get a few groceries in the morning and she helped unload and put them away. Then she helped with the in and out of the car, out to lunch and back home for naps. My nap too, I was wiped! It may not sound huge but it was a HUGE morning for me :)

Thanks for your prayers and love.

All Psalms

Friday, February 4, 2011

Halfway Through a Peanut Butter Sandwich

Ok

So I can only eat half of my peanut butter & jelly sandwich, made the way Oma would, cut in triangles so there are no crust corners and all. I can't quite get through a small book for Naomi without my voice going out. I can't quite make it through a whole day with my two children alone. I have leaned steadily upon the Lord's strength, and several times been in much despair, because I haven't. There comes a point, like last night, when you want to rebel. For me it was throwing in the towel on the whole disease thing and making a good dinner inspired by Guy Fuiri's Crispy Potato Nugget Hoisen Halibut recipe. Turns out I drove myself crazy and my loving and strong husband led me back to the Psalms.

Woe is me, I am in despair. God is strong and can do immeasurably more than I can think.

Woe is me, I am having a rough time. God is sovereign and His grace abounds ever more.

Woe is me, I'm not really looking forward to another 2-3 months of a disease. God was here the last few months, before I was born, and will continue to be throughout eternity.

Have mercy on me, I know you can do it, God. You even know the trillions of creatures in the sea and sky, and designed them.


That's pretty much a typical Psalm, of course articulated more clearly. Many have a woe and a praise of how great God is. How honest of David to articulate his wrestle. How grateful I am that these are now part of Scripture and I can read them, meditate on them, and imprint them on my heart.

We are now moving on to reading a Psalm a day and a Proverb a day. I'm a fan.

Thursday, February 3, 2011

Appointment

It was Groundhog day, and the appointment that seemed so far off was here. Yesterday.

It turns out that despite my silly worrying, the neurologist was pleased with my progress. We are slowly altering my medicine regimen and are looking at a time frame of about 2-3 months to stabilize before going on to alternate routes and ideas.

I REALLY like my neurologist. He has a calm and pleasant demeanor and seems to have harnessed wisdom and intellect stored on neat little shelves in his mind. I guess this is how many doctors have to learn to function. God has gifted them with high intelligence and somehow throughout training and experience, the doctor has to harness and communicate well to the patient what would serve him or her best, within that season. It paints a clear picture of patience for me. Imagine all that studying and interest into a rare disease (which I have). Then MAYBE once in 10 years someone comes along that presents as if they have the disease. Would you be able to tap back into that little "rare disease shelf" in your brain? I certainly wouldn't. Thank God for my neurologist who has a special interest in MG. As far as doctors go, I can now, even more, understand why they get a "gleam in their eye" about these rare and interesting diseases. Amidst all the bs and paperwork, something they actually studied for and have interest in presents in a patient, and they can serve in a somewhat fulfilling way. Talk about patience!

Among other things, Mike and I mentioned the bizarre events that led to a little searching about the rare disease from Tuesday's post. Not only is my doctor amazing at knowing the ins and outs of MG, but he happens to be an "international expert" in the disease we mentioned. He said, that disease is actually common. Myasthenia is rare. Oh.

So, here we go. We have a heading and an altitude for the next few months. I'm sticking with the part-time nanny and relying steadily on the Grace that God has revealed to us throughout this trial and throughout time - with His help of course. :)

One of my favorite go-to phrases (Jo, don't be afraid of sudden disaster) was in our proverb today:

Have no fear of sudden disaster
or of the ruin that overtakes the wicked,
for the LORD will be your confidence
and will keep your foot from being snared. Prov 3: 25-26

Tuesday, February 1, 2011

Mysterious in Refreshingly New Ways

God works in these mysterious and refreshingly new ways, which constantly peek my interest. I had NO interest in getting out of bed this morning with the way I felt. It was as if each arm had a little dumbbell tied on and my eyes were like looking through my iced over windshield. It was the hour to get up, though. David was awake, Mike was about to walk out the door, and Naomi had been up since 5:00am playing in her room, fully dressed. I settled into our living room chair with my tea and a bottle for David, and Kissed my honey goodbye. As if this is a good environment to have a quiet time with the Lord, I opened to what Mike and I are reading and started to read. Still feeling physically miserable.

The elmo phone has been floating around this room all morning, and Naomi brought it to me about 7:15am and said, "Mommy, you have to call Oma." Oma is my mom's mother, who we are very close with, but really only call a few times a month so this was a little out of daily routine. Plus, I have learned to not call Oma until after 10am for risk of waking her up. So I responded, "We'll call her later, it was nice of you to think of Oma."

As it was getting harder to lift David throughout the hour, I was relieved when the nanny came through the door at 8:06am. I encouraged her in her work, gave a little instruction, and made a b-line for my bed.

Attempting to not feel lazy, I muddled a prayer that I would have wisdom about my neurologist appointment tomorrow, and that if there is anything specific I should ask or bring up, God would inspire Mike or I to do so. Just as I am about to doze off- *ring ring* the phone - It was Oma! Ok. Now something is up. Oma had just read an article last night in the "Reader's Digest" about a mother bringing out a diagnosis for her son who had trouble walking throughout early childhood. It was a hopeful story, and the boy shared a birthday with me, May 9. I felt a sense of urgency, because between Naomi saying I have to call Oma and Oma calling so early, I knew I should get myself out the door and get the new "Reader's Digest." After a few texts, waiting for the car to de-ice, watching Naomi paint the letter "P," carefully walking on ice, I made it into the little grocery store to find that this was the same Reader's Digest I have at home. I RARELY buy magazines at the checkout, but a few weeks ago, I picked up this same one when my mom was visiting, and I remember her commenting - "Oh- Reader's Digest - Oma always gets this."

Could this article Oma was calling about really have been sitting in my living room for weeks? I sat in the store, sifted through, and looked for the article. After two skims and about to give up, I found it as one of the excerpts in "The Best Day of My Life" as told by Lisa Goff, and it was Cynthia Teare's story, "The Day My Son Walked Again." It ends with a joyful triumph after a long trial of celebrating her son's "two" birthdays. May 9th and June 21, the day the dopa medicine worked and allowed him to walk. My honey's birthday is June 21st. A spectacular day indeed.

Refreshing glimpses of confirmation. A while ago I learned that revelation comes from the Lord and confirmation comes from people. Thinking confirmation comes from people can be dangerous and lead to a lot of interpretations of circumstance that aren't exactly accurate. I'll try today to have an attentive ear and be quick to listen to revelation.

I mentioned to Oma, after we went back and forth how ironic it was that Naomi said I should call her, how we see God working only when going through a trial. As if when "life is good" we don't have a reason to. She agreed and concluded how many people do not understand this. I never thought I would be thankful for our trials. I am often quick to think - this too shall pass, when this is over, when we get over this, or when things get back to "normal." All are not really helpful thoughts for me in this season. There is a richness in this trial and it lends a tender eye to small ways that God is working on a large scale beyond my comprehension.

So I will research today. The rare disease in this article and my own diagnosis. Come up with more questions that would be helpful to ask the neurologist. But, even as I research away, I'm sure it will not be nearly as powerful as one meddled prayer, one moment really listening to the Lord, or a moment where I could actually hear a "still small" voice if one was speaking. AND even if I fail at that, He will graciously hit us over the head until we hear what He has to say. Because that's what He offers us: abundant Grace.

Please pray for wisdom for us and our doc!