On praying and believing

Praying for renters for our duplex makes me feel a little sheepish.

You see, everywhere you look, someone is enduring considerable financial hardship. All it takes is to remember the suffering of the people of Haiti to bring this concept home. In comparison to losing everything to one of the worst natural disasters in modern time, our situation where we've gone without a renter for a few weeks isn't nearly as dire. In essence, I buy into the lie that there are "big" or "small" prayer requests. So, I approach God like He's an overworked and spread-thin sovereignty of limited resources, and I realize that even as I pray for the thing I so desperately want, I've already made it a foregone conclusion that I'll be disappointed. Because I don't want to put God in a box where He must answer my requests in the affirmative in order for me to put my faith in Him. (Which is why I get so weird when someone tells me that God can heal Ellie; I know that He can, but I don't require it of Him. But I've yet to fully understand myself on this point, so I'll leave it for another time.)

But I think it gets to the bigger issues of whether I feel worthy for His blessings and whether I believe He answers the prayers of some unassuming somebody like myself.

Over the last couple of years, I've done some study on what the Bible teaches on prayer. More than once, I've landed in Luke 18 at the Parable of the Persistent Widow. For me, it is always a message of comfort and an encouragement to continue praying. If even the unjust judge will yield to the repeated requests for justice, how much more will Our Father who is perfectly just honor our persistence?

Luke 18

The Parable of the Persistent Widow

 ¹Then Jesus told his disciples a parable to show them that they should always pray and not give up. ²He said: "In a certain town there was a judge who neither feared God nor cared about men.³And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'

 ⁴"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, ⁵yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' "

 ⁶And the Lord said, "Listen to what the unjust judge says. ⁷And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? ⁸I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?"

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Friday update, a day late

Well, we made it home around 10pm last night. So glad to be back. But. . .

I am fairly frustrated by the trip.

Yesterday was a whirlwind of different medical professionals in and out of Ella's room all day. It was very confusing and seemed like none of them were communicating with anyone else. Each time a doctor came into the room, I asked about the same things, but I really never got anywhere with any of them. Our local neuro had told us she'd like genetics to see Ella while we were in the hospital, and I'm fairly certain that it was more important for her to capture an event on the EEG and not just go for an arbitrary 24 hours. But, even though I asked several times, we didn't get to see a geneticist and the minute we hit 24 hours on the EEG they took the leads off.

I have had concerns about feeding difficulties with Ella. The nutritionist spent some good time with me and listened to my concerns and gave me some specifics to work on. She recommended that Speech and OT come to evaluate Ella and left to set that up. But time was running out.

Soon after that, the nurse was there to discharge us. At this point, I hadn't heard whether genetics was coming, I really wanted Ella's eating to be evaluated, and we still really didn't have a good answer on "fine, the EEG is not showing anything now, but what does it mean if she has these abnormal facial movements at home?" thing. So I started asking questions. The nurse sent the discharging doctor back in. Said that genetics would follow up later, pending one more test result yet to come in. Huh? Well, okay then. That's not consistent with what I knew from before, but I just let it go for now.

I spoke with Chris on the phone, and he said "Can you at least have the doctor look at the video of Ella's facial movements before you go?" So I went out to the nurse's station and played the clip for the doctors, who then called their attending and described it to her. She believed it was a tic movement and not a seizure. So, we'll continue with current course of treatment. And if Ellie starts to have them more frequently again, they encouraged me to video as many of them as possible and keep our neurologist posted. Okay, I can do that.

I really wish I could think of something that makes this trip worthwhile, but even for an optimist like me that exercise is proving difficult. I guess I can focus on the nutritionist's suggestions and try to get Ella's eating on track. Fortunately, the early intervention program that we are in the process of getting Ella admitted to will be doing speech and OT evaluations too. And of course, we learned that Ella's EEG shows no evidence of residual infantile spasms. Which is just awesome! And we did get to see Aunt Kristin and Uncle Shawn, and my friend Jennifer, so that was good too.

After all that venting, I'm gonna go get rested up. I've been battling fevers, coughs, and aches since Tuesday, and it's catching up with me. I'm feeling really run down and have no strength. I'm glad to have the weekend to recover.

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Thursday night update

We're here at Children's Hospital for the first night of what I hope will be a short visit. Ella's drifting off to sleep in her crib as I type. She has been such a good sport so far. Just really playful and laid back, which has been so nice. The only fuss she made was during the EEG hook-up itself. That was seven or eight hours ago, and so far no abnormal facial movements have been observed. The event button is here, just waiting to be pushed. I asked the pediatric resident if they were gonna keep us until an event was recorded, but he couldn't say for sure since it would be up to the neurologist. The nurse later said that they have kids "sit here for five days waiting on something to happen." So my hope is that we can capture an event and that it can happen sooner than later.

I also asked the resident a question that has been burning in my mind since Ella's four-hour EEG right before Christmas. We never really had EEG confirmation of ACTH's effectiveness after she finished her course of treatment, though it was assumed since the spasms went away, so I asked if there was any evidence of infantile spasm-like activity (called hypsarrhythmia) on the most recent EEG tracing. He said it was best left to the interpretation of the neurologist but he read went ahead and read the dictation to me anyway. It started out by saying, "this is a mildly abnormal EEG." Already I was encouraged because the report from her very first EEG last summer was (and I don't think I'll ever forget these words) "very abnormal and worrisome." It went on to say something about noting epileptiform activity in the right frontal lobe (which is where her brain abnormality is), mostly during sleep, that does not have any clinical correlation--in other words does not manifest as an observable seizure.

That's about all I know so far. I expect to see the neurology team in the morning and will surely know more by then. I'll update after that. For now, I'm heading to bed. Goodnight!

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To Little Rock. . . again

I should be packing. Correction, I should be sleeping and already packed, but I have a habit of cleaning my house in anticipation of any upcoming trip and today was no different. But rather than packing, here I sit, trying to capture a few thoughts about what tomorrow brings.

Ella's long-awaited 2nd 24-hour video EEG is finally upon us, an appointment more than 6 weeks in the making. I am a mixed bag of feelings about it all. Relieved that we've made it to this point without any apparent acceleration of (possible) seizure activity. Nervous that they might keep her until they see her latest type of abnormal movement on EEG--because these events are actually becoming increasingly rarer. Ready for the final word on a potential metabolic problem. Looking forward to get started on genetics testing but worried that it might keep us there for longer than we otherwise anticipate and scared to think that something might come back abnormal. And then there's the fact that I have to leave my kids and husband behind; this is definitely the worst part for me. I'm sad for our family, but I know we will all be okay.

One thing's for sure: for several reasons, we gotta get home as soon as possible. Chris only has two days he can take off, which would be Thursday and Friday. Our boys can only go so long without their momma. And on the work front, I am scheduled for a CPR class on Monday, and if I miss it, I might not get to work until I make it up.

It's funny to me that this all still feels like a transition, like we're traveling toward something but haven't arrived. Upon hearing her story, a lot of people ask me what Ella's prognosis is. My answer is usually the same, "No one knows for sure, but we have a lot of hope for her." I keep wondering if the physical delays Ella has are transient and surmountable or if they will come to define her. When will we know? Do we even want to know? Does this weekend of tests bring new diagnoses? Will they change how we proceed?

I am looking forward to this in many ways. I want as much information as possible, even if it's hard. The more we know, the better prepared we can be to give her the best chance for optimal development. If love were enough. . .

A couple of house-keeping things: internet access is kind of funny at Children's. Unless it has changed substantially and if my memory serves, I'll be able to post to my blog and read your comments through email, but I won't be able to reply in the comments here. My blog is linked to my facebook profile, so you can keep up with me there, but I won't have access to facebook otherwise. I will get email notifications about facebook posts and comments so I know if you're reaching out, but again I won't have any way of replying during the time we're in the hospital.

I'm hoping we'll be home before the end of the weekend. There's a lot that has to happen to make that work out, but it's certainly do-able.

p.s. To clarify, as far as I'm concerned (though no doctor has confirmed this for me), the abnormal movements Ella is exhibiting do not look like infantile spasms to me. This is good news. I'll be asking specifically about what the EEG shows just to be sure. If that's the case, then Ella's gone nearly seven months without spasms. That's so exciting!

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Scenes from a birthday bash

Ella had some help with her candles.

                            

She enjoyed her cupcake, at least the icing part anyway.                    

'Course, she liked the wet cloth we used to wash her face even more.

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Book winner

True Random Number GeneratorMin: Max:   2Result:2

Congrats to David! I will bring the book with me when we come to Little Rock next week.

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Happy Birthday, Ella Claire!

Happy 1st birthday, Sweetheart! I can't believe you are already a year old! You complete this family in ways I couldn't have imagined. You have such a pleasant and easy going personality, and you charm everyone you meet. This year has had its challenges and heartaches, but you have taken it all in stride. I am so proud of you. I am looking forward to many more years of milestones and miracles. I love you, LaLa!

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Helping Haiti

The devastation in Haiti is heavy on my mind and heart. After the earthquake on Tuesday and seeing evidence of it's utter destruction, it's easy to feel like there's just too much need and that one person can't possibly make a difference. But add the efforts of many one-person's and you've got quite a movement.

I encourage you to DO something. Give something. One person can't do everything, but everyone can do something.

Here are some links to donate to a few trusted organizations that are working in Haiti even now:

Samaritan's Purse

Compassion International

Mercy Ships

Doctors without Borders

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If you do give or have already given to the relief efforts in Haiti, would you consider visiting Kelly's Korner and leaving a comment to let her know? She and her husband will give $1 to Compassion International's disaster relief fund up to $1000 for every person who comments to say they have donated (it can be to any organization working in Haiti, not just Compassion).

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My favorite memory from Christmas this year

He's still only four. And does typical four year old things most of the time. But sometimes Jackson surprises, even astounds me, with his tender-heartedness.

For Christmas at our house, Santa got the boys matching presents; some of the pairs of gifts weren't exactly identical but they were very similar so as to hopefully minimize the potential for feuding. As I understand, it was hard for Santa to know which present to give which boy. One of the pairs of presents was a Sheriff Woody doll and a little green man, both from Toy Story. Since Cooper already had a small Buzz Lightyear figurine (which was originally Jackson's by the way)(and especially since a bigger Buzz was on the way for Coop), Santa determined that Jackson should get the Woody doll while Cooper got the little green man.

Within seconds of opening the Woody doll, Jackson couldn't even enjoy it because he was having to fend off his brother's grabs and Oo I want that's. Jackson wanted the doll too, that much was clear, but he knew that Cooper wanted it more. And do you know what my sweet boy did next? Jackson willingly handed it over to his little brother saying, "Here you go, Cooper, we share it." That night three weeks ago was the last time Jackson got to hold his Woody, and he has yet to demand it back.

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Book giveaway

From the back cover: "Author Tom Davis encourages us to move beyond words and become Christ to those in need. Filled with remarkable stories of hope and mercy, Fields of the Fatherless will inspire you to love 'the least of these' and discover the joy found in becoming the hands and feet of Christ."

When I signed up to be a part of the Megaphone with 1,000 Voices, a movement from the Children's HopeChest to spread awareness of their work with orphans in Africa and Russia, I was given the opportunity to give away a book written by the founder of HopeChest to one of my blog readers. It all comes full circle for me because a free book is how I became aware of the organization myself.

To enter this giveaway, all you have to do is comment and answer the following (taken from author Anne Jackson): Imagine a world where you had the power to eliminate extreme poverty. What would you do and how would you do it? What does it look like to you?


Comments will close on Friday, the 15th, at noon. I'll use random.org to pick a winner.

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Banana Cake and an upcoming giveaway

Come by the blog starting tomorrow to enter for a chance to win a free book!

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(A post in which I type "bananas" more than I have in all my previous posts combined)

(dedicated to my sister Amy ;)

Earlier this week, at the beginning of what was reported to be yet another round of winter weather, I ran to the grocery store in the middle of the night, wondering how long it would be before I would leave the house again. I stocked up on staple items as well as lots of ingredients for yummy treats. If I'm gonna be stuck at home for days on end, there shall be sweets! In that effort, I decided to get two bunches of bananas. I guess I was thinking about using them for banana bread or something like that.

The problem with bananas is getting them to the exact stage of ripeness necessary when I have the time and energy to bake with them without overshooting said ripeness by a week or two, but I'll get back to that in a minute.

With bananas still in the back of my mind (and the clock ticking on using them), I checked on my peeps on Facebook yesterday. A friend's momma had just updated that she was baking a banana cake to keep her kitchen warm. And I immediately thought: "Oooooo banana cake!" Followed shortly thereafter by, "Wait, I don't know how to make banana cake."

I asked her for the recipe that she was using, but I found that I didn't want to wait. (She graciously posted it later, and I have saved it for future use). So I went to allrecipes.com and found a really easy recipe, and because I had indulged my sweet tooth at the store, I had everything I needed to make it. Love that! Before I jumped right in to it though, I decided to check my America's Test Kitchen cookbook just to see their banana cake recipe offering since everything in it is always so tasty. It was a bit complicated (shocking, I know), and by this time I was ready for CAKE DARNIT so I went with easy.

The problem persisted that my bananas were not even the least bit ripe yet, not even a hint of a brown spot. But they had lost all their green at least. In reading the comments on the recipe I had picked (which I always do to make sure I avoid any common pitfalls of following some random person's recipe), I talked myself into just using the bananas I have as is since more than one person said the cake turned out just fine with fresh bananas. However, under the banana cake section in the ATK cookbook, they talked about the importance of using overly ripe bananas for the sugar and moisture they add, AND they shared an easy way to ripen them. So that's what I did.

After all that, here's what I ended up making:

1 yellow cake mix

2 very ripe bananas*

1 tsp. baking soda

1 tsp. cinnamon

*To ripen fresh bananas (no green): place them in the oven for 10-15 minutes as it preheats. The peels will turn dark brown/black, but the fruit will be just right

1. Preheat oven to 350 degrees.

2. Prepare cake mix per package instructions

3. In a separate bowl, mash the bananas and mix with the baking soda and cinnamon.

4. Combine banana mixture with cake batter until smooth and pour into a greased 9x13 pan.

5. Bake for 35-40 minutes at 350 degrees, testing for doneness using a toothpick.

6. Allow to cool (though we couldn't wait) and frost with cream cheese icing.

Variations to #6: mix equal parts banana pudding and whipped cream for a topping, or you can even leave it plain--it's certainly moist enough.

BONUS: Because this has bananas in it, I was able to justify having a piece for breakfast this morning.

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New-fangled technology

This is less of a post and more of a question really. I am rather fascinated with all the newness of blogging and the internet at large, and I often think about what "the rules" will be even ten or fifteen years from now, rules that haven't been written yet and will probably only be discovered by trial and error. I was thinking about what it will be like when my children are older and become aware that this blog is out there for them to read. I am not overly personal, I don't air out all my grievances here, but I do write of very real things at times. Will I want my children knowing all the nooks and crannies of this time in my life? And I try not to overshare with respect to them either, but certain stories and pictures that are cute now because they are young may be embarrassing to them when they are teenagers and beyond.

So, when your kids are older, will you let them read your blog? If the answer is yes, does that inform how you blog now?

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A few of our favorite things

Watching the kids open presents for Christmas this year was a welcome salve to a wounded heart. It was good to have the distraction. The boys were so excited about everything and even offered some unprompted thanks along the way. Jackson was especially pleasant this season. On Christmas evening at my grandparents' house, he got a pair of footy racing PJs that he particularly liked. He said, "these are so nice!" then he asked me to help him put them on right away; upon his return to the room, he went around the circle letting everyone feel for him/herself just how soft they were.

This is not a comprehensive list, but I wanted to share pictures of a few of the gifts that we are really liking around here.


Jackson got this glow board from his Grandma Lolah & Grandpa David. It has pictures you can trace (Toy Story for us, of course), and a light system that makes the different layers of picture glow at separate times. Very cool!

Grandpa Charlie made this doggy for Cooper, and I love it. I wish you could see this little guy in action. His wheels are set to make him wiggle back and forth as he moves. So cute! It took me a while to realize that it was in Arkansas colors; I only figured it out after my nephew from Michigan opened his own maize and blue dog.

I'm including these pictures of the toy Grandpa Charlie made Cooper last year. Isn't he talented? More and more, the homemade toys and presents are the ones that we cherish most.

This is the present that we let Cooper open first at my grandparents' house. Once he saw it, he wanted it out of the box immediately and after it was finally extracted ("Mom's opening my Buzz." A few minutes later, "Mom's still opening my Buzz."), he really didn't show much interest in any other gift for quite a while that night. To say that the boy loves all things Toy Story would be putting it mildly.

Both of these toys are big hits with Ella. Big buttons, fun music, flashy lights? Check, check, check!

Finally, I got a hat that my friend Anita crocheted for me. I'm not sure I'm cool enough to pull it off, but it is so pretty. I tried to take a picture of myself wearing it, but let's just forget about that series of failed pics and go with this one.

What were some of the favorites gifts you or your kids received this season?

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In my head tonight

On the Ella front, no news is no news. It's just waiting and more waiting right now. We're (still) waiting to hear when Ella's 2nd video EEG at Children's will be (It's been a week since we first learned that another trip to Little Rock was warranted; I called the clinic again today for a progress report but didn't hear back). We're also (still) waiting on the interpretation of some abnormal lab results as well; they could mean nothing other than reflecting normal dietary fluctuations or they could signify a potential metabolic problem, and last we heard our neurologist was waiting to hear back from the geneticist before making a final determination on that. Finally, I haven't mentioned this previously but we're also waiting for an intake appointment to see if Ella qualifies for a full-time developmental daycare just down the road from us; it is an exceptional opportunity for her, and I really hope she'll get the chance to attend. There are nurses in every room and the respective therapists are right there on site too. She's made such progress going to therapy just twice a month, so I can only imagine what she could do with (what I assume would be) more frequent sessions.



The kids and I had a stay-at-home day due to school cancellations for weather, and tomorrow looks to be more of the same. Just before lunch, we spent an inordinate amount of time bundling up to go play in the snow, but fortunately the boys really enjoyed themselves and stayed outside for quite a while, making it all worth my efforts. After learning to pack snowballs and make snow angels and getting wind-chapped faces, we came inside, made hot chocolate and lunch and from then on the big boys were climbing the walls. I told Chris tonight that I would probably enjoy them a lot more in general if I didn't have to try to keep them quiet all the time. Though using "inside voices" is probably a good skill to cultivate, regardless of the presence of a sleeping baby. Hopefully, we can find a few new and exciting outlets for all that otherwise pent-up energy of theirs for tomorrow.


I'm still missing my grandma like crazy and think of her often throughout the day, but I have surprised myself with how well I seem to be coping with her loss. I have several theories about this. As I mentioned in my little speech during her funeral, I had already begun the process of grieving the loss of much of who my grandma was because of the nature of her illness; I had time to prepare for saying goodbye. It's still hard as heck, but made a little easier somehow. I also think my children have been a great source of comfort to me through all this, and they are a welcome distraction from my sadness. And of course the funeral was an incredible experience for me and was key in bringing some closure. Grandma was always asking us to sing for her, so it only seemed fitting that we would do so at her service. Originally, I didn't think there was any way I could get through it, but Amy started rehearsing at the house and we'd learned that the singing would be from behind an opaque window, and so it just made sense. So it was I, my sister, my brother, and my husband singing Blessed Assurance, accompanied by Shawn's wife Kristin on the keyboard. Like good Baptists, we sang the first and the third verse for her. After the hymn, there was a prayer, then I and my dad walked up to the podium together. I said my few words, and then Dad offered an incredibly moving eulogy; parts of it are still replaying in my mind even now. A few of my favorites: "Abe Lincoln said, 'All I am, I owe to my angel mother.' So it is with me." "I loved her laugh. Often is was full, open-mouthed, head back, almost a roar." And "We find comfort that you are finally at rest. Your work here is done. Your life was given in the service of others, and we seek to live up to your shining example."

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A tribute to Mildred

I'm not very good at public speaking, especially if it is of an emotional nature, but I had the opportunity to say a few words about my grandma at her funeral last weekend, and I knew I would have regretted not doing so. Below is what I shared.

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Thank you all for being here today. I'm going to try to get through this without getting completely choked up, but I am Mildred's granddaughter afterall, so you can understand why that might prove difficult.

One of the hidden blessings, if such a thing could be found, of my grandmother's slow decline in health is that I have been able to grieve the many small losses along the way, so that for me, today, though sad, can be about celebrating her life. I don't think she would have wanted it any other way.

I'm sure many of you know that my grandmother liked to collect things. Over the years, she amassed a collection of decorative plates, for example, that the Franklin Mint itself would be envious of. More than things, though, she was an expert collector of people. This is why I believe that her 50th wedding anniversary celebration was, as she told me more than once, the happiest day of her life. Because she was surrounded by her people. In a scope that was ever-widening, she lavished those she called her own with an extravagant love and a fierce loyalty. And we are all the better for it. The epitome of hospitality, she strived tirelessly to make everyone feel at home. And we did. She gave and gave and gave and gave and gave until she couldn't anymore. You know, before she got sick, I never really saw my grandmother sit down for any substantial length of time. It seems that she lived her life in such a way that she needed those four and a half years of rest before God called her home.

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