hands of love #3...

Whew-- lots of cooking this week! With Marc out of town all week for RUF staff training in Atlanta, I made it my goal to "get ahead." So I focused mostly on foods where I could make a big ol' batch and stock up my freezer!

My top 2 crowning achievements of the week... (I know this may seem pathetic to some of you, but I have to admit, I'm quite proud of myself! When you're forced to cook with new, weird things like "xantham gum" & "quinoa flour," it calls for celebration when it actually turns out edible! ha!)


Gluten-free, dairy-free, soy-free, & egg-free blueberry muffins from scratch!


And a GF,DF,SF,EF (can I just abbreviate & spare myself the trouble?) lasagna! It was DELICIOUS!!! There is only one brand of cheese that I've found that is gluten, dairy, & soy free and melts just like the real stuff-- it's sold at Whole Foods. (which is over an hour away from my house, so we have to stock up on it when we can.) And we still had enough to freeze 4 big pieces for future meals for Caroline!


A GF,DF,SF chili in the crockpot. Again, perfect for freezing extras.


Some GF,DF,SF,EF FLOURLESS "peanut butter" cookies! (we used almond butter) After I baked them all, I put the rest in ziplock bags & into the freezer. (someone told me I could do this & they'd still be good... is it true??)


And we're still juicing our veggies & fruits! To be honest, this one wasn't all that yummy to ME (there wasn't enough fruit to cover over the "veggie" taste), but Caroline still loved it. (How many 2 yr. olds eat that in a day?? By the way, I know several of you have said you're interested in getting a juicer & trying it out. If so, be sure to drink the juice as fresh as possible-- if you let it sit in your fridge, it loses the nutrients & should be discarded after 24 hours.)

And even though it probably lost all of its nutritional value doing this, I took some of the remaining juice, poured them into freeze pop containers, & put 'em in the freezer so she can get a cold frozen "pop."


Baked pork chops, fresh green beans (her favorite veggie), & black beans. (this wasn't for freezing)


And I found this stuff at our regular grocery store-- it happens to be GF,DF,SF, etc. with no nitrates or MSG.


So it was easy to saute it over olive oil with fresh veggies and waa-lah- a meal! (also not for freezing)

These hands of love are tired!


But my daughter, YOU are worth it all.

more beautiful than hair...

I (Amy) probably should not post when I am so raw emotionally. I guess I have always run to writing/journaling when sadness overtakes me. I suppose some people probably think I should only post when I have it "all together" or only keep this blog for the cheerful moments, but in my heart, for me to do that would be dishonest.

I DON'T have it all together. (I know that no one does.) While my days are filled with ABUNDANT joy in watching my daughter grow and flourish in her communication and understanding of the world around her, this day has been discouraging for me. And I'm grieving.

There are understandable reasons for my saddness... Marc is out of town for the week at RUF staff training, and I'm single-parenting it. (let me tell ya, I have the utmost of respect for single parents, and especially for those of kids with health concerns or restricted diets...) He is a huge emotional support to me, not to mention a physical help. Also sleep deprivation is definitely at work here, too, because a certain someone is up now at 5:30am READY to tackle the world! :)

But today it was the little things-- trying to actually GET OUT in public, only to be met with
Stares.
Pointing.
Whispers.
Smiles of pity.
The big kid at the playground says loudly, "Hey- she doesn't have any hair!"

Now, hardly anyone is ever BRAVE enough to actually ASK me about what is happening with my child and why she is bald. (this is a catch 22 because on one hand you DON'T really want them to ask, but then on the other hand you get angry when they're silent, too...)

Meanwhile, MY child is completely oblivious, sharp as a tack!, observing everything and everyone around her, greeting strangers with the warmest smiles saying, "Hi!" "Hi!" at a decibel level that is just slightly higher than appropriate in stores. :) (and she'll continue to say hi until you say it back, you understand...) :) She definitely surprises people by taking them out of their private little "zones" and invites you to look up & enjoy the people around you.

She has no idea that anything is even "wrong." She knows she is beautiful. She knows she is loved. She knows she is a beloved child of Jesus. She is a light wherever we go in this dark world.

And I think that's more beautiful than all the hair in the world.

But today, the truth is, I'd be happy with some hair. When will this end, O Lord?? I'm weary. I don't know what to do. I constantly wonder if I'm doing the right thing. I look back at pictures and feel guilty that I didn't see all of this coming. How could I have known? I am doing everything I can. Things improve. Things get worse again. Things improve. And I don't really know why. No one does right now. We know some things. But not all. It's exhausting. And I covet your prayers not just for Caroline, but for me.

I am more and more convinced that the Lord didn't give all of this to Caroline for HER to wrestle with-- after all, (right now, at least) she is as happy and content as she could be! But it's her Mommy & her Daddy that the Lord is working on right now. We are the broken ones. He has ordained suffering for us in order to bring about His perfect will. And ugh-- it's painful! It's showing me all those yucky sins of pride and unbelief that I carry & harbor each day.

Caroline doesn't need Jesus' healing hand as much as I do. Deep down, I sometimes want to look at those people in the stores and say, "Please stop staring. Stop pointing, would you? Quit whispering about my kid! She doesn't have a problem. It's ME that does! Point at ME! I'm the one who needs help!"

In a little while my sweet daughter will probably wake up from her long afternoon nap reciting her favorite lines from books, or singing "How Deep the Father's Love for Us," or maybe it'll be the "MommyMommyMommyMommyMommyMommy, MOMMMMMYYYYY!!!" alarm, but when I open that door, one thing is sure: I'll find her grinning at me from ear to ear.

And it'll all be okay. :)

singin' in the rain...

When it rains on the day you planned to go to the playground, you gotta find something else to do...

hands of love #2...

You know how you go through lulls & don't want to cook? (cough cough-- those uh, "lulls" last quite a bit longer for some of us than others...) :) Well, this week for me was all about (relatively) fast & convenient as I just wasn't wanting to cook. (yet, I still need/want to provide lots of good nutrition to continue the good things we're seeing in Caroline's health...)

So prepared for you this week, sweet Caroline, with hands of love...


Quinoa ("keen-wah"... it's like a delicious rice, but more nutritious! You should try it!) with sauteed bell peppers, onions, & some spinach topped with some canned salmon. (just a tip: if you have to use canned meats, look for those that only have the ingredients you're actually looking for-- (novel idea, eh??) SALMON, salt & water, for example. Most of the cheaper ones have soybean oil in them. I had no idea before all of this, but studies are showing that soy is not all that healthy for us as we thought (especially for our kids) because it increases estrogen levels & can trigger early puberty in children. So unless you're an older woman who needs estrogen, think about limiting your soy. Look for canned fish WITHOUT the soybean oil. And in cooking, try substituting olive oil for "vegetable" oil (which is really soybean oil- look at the label) when you can.


A turkey kielbasa, lentil, & vegetable soup that I made a few weeks ago & froze individual servings in ziplock freezer bags to pull out & heat up in times like these! (that's our idea of "fast food" for Caroline these days...)


An easy & GREAT nutritious snack is to dip carrot sticks into a mashed up avocado! (you could doctor it up & turn it into guacamole if you have the time, but we just eat it plain for now.)

Oh, and by the way, if any of you feel you're spending WAY too much for groceries (like we are) & wondering which foods are the most important to buy organically (due to farmers' pesticides leaving residue on your food) & which ones you could save a little money on by buying the regular stuff, here's a little chart that you can print out to take with you to the grocery store.


This was a perfect summertime lunch for our family. Chicken over cucumber salad. (cut up cucumbers, tomato, red onion, feta cheese--- which we left out for Caroline--- tossed with olive oil, red wine vinegar, salt, pepper, & oregano) Yummm...


And our fastest meal of the week? A gluten free, casein free, soy free, nitrate free, MSG free turkey hot dog (from Trader Joe's!!) & veggie chips! Woohoo!

somerpepper...

Oh, the joys of language learning...


Today Mommy showed me how to do a somersault.


Flip!

And then I immediately sprung up with a concerned look on my face and said to Mommy, "Where's somerPEPPER?" (because--of COURSE-- "salt" always goes with pepper, right? So naturally a somerSAULT should go with... a somerPEPPER, right?)


Ha ha!!!


And in the bathtub tonight, my conversation went like this:

"Mommy sins. I sins. Daddy sins. The students like sins. But Jesus did not sin."


Yes, sweet one. Though we all fail (even the students who apparently "like sins"), there is One who did not disappoint. Hallelujah!

He picked me...

Honestly, I (Amy) feel like a shut-in sometimes.

Most days, my schedule literally consists of planning meals, preparing meals, cleaning up after the meals, reading about and researching intestinal health issues, scouring books & websites for recipes, taking trips to the grocery store, unloading & reloading the dishwasher, emailing and corresponding with various medical personnel, and oh yes, trying to find time to actually play with my child in there. There just doesn't seem to be the time (or the motivation, honestly) for cleaning my house or laundry or doing things I'd actually like to do...

I just feel like I'm in a perpetual survival mode. Day in and day out. On days like this it weighs so heavy on me. It feels like it will always be this way. I feel depressed and overwhelmed. And not to mention alone.

I feel alone on this. No one else can make the decisions for me. (I miss the days when someone could just tell me what to do & I didn't have to question it.) No one else knows my child better than I do. No one else seems to understand what I need. And maybe that's because I don't know what would help me, either! (and if I did, I'm terrible at asking for the help I need. Oh, the life of a broken sinner!)

An old friend from our Texas days came into town last weekend-- and the minute I saw her & we hugged, we both instantly started sobbing together. It is moments like that that I need to keep going.

As she listened to me talk about what was going on with Caroline's health, she wanted to know what Megan, Caroline's birthmom, thought about all of this. And I told her what Megan had told me-- that this breaks her heart, too, but it also confirms to her that she made the best decision for Caroline. Megan is doing a GREAT job at raising her son, Brayden (4), but she'll be the first to tell you that it's incredibly hard to make ends meet. And I am sure she thinks about the "what ifs" just like I do. I'm sure she wonders how she would've been able to find the time (& money) for all of these doctors visits, tests, & organic/gluten-free foods. (Megan, I know you & you're an amazingly strong woman- I know you could've done it if you'd had to.) But as I've watched what has happened to this precious girl of mine, Marc and I can't even fathom the thought that had Megan made a different choice, she would have been just another little girl in Texas that we would have never met. To remember that brings tears to my eyes.

And then as I shared that thought with my friend, she said something that I'll never forget.

"That's why He chose YOU, Amy! He knew what was going to happen to Caroline all along, and He knew YOU could handle it."
"But I CAN'T handle it!" I screamed through tears.
"YES YOU CAN!" (I love a friend that will talk back to me and hug me at the same time.) That's why He wanted YOU to be her mama. YOU are the only one that can do this. He knew that. That's why He picked YOU, Amy! He picked YOU."

Wow. Who knew that when Megan placed that precious little girl in our arms at the hospital what was to come just a few years later. I had NO idea what was in store. No one ever does. But if all of THIS isn't proof that there is a Creator who had His loving hand upon my sweet Caroline from even before she was born, I don't know what is.

"For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake..." (Phil. 1:29)

In our church, we commonly recite deep truths about the Lord together, and my goodness, if this question #1 from the Heidelburg Catechism written centuries ago wasn't written ESPECIALLY for me right now... (how comforting are these words-- I've almost got it memorized.)

Q. 1 Christian, what is your only comfort in life and death?

A. That I am not my own, but belong body and soul, both in life and in death, to my faithful Savior Jesus Christ. He has fully paid for all my sins with His precious blood, and has set me free from all the power of the devil. He also preserves me in such a way that without the will of my heavenly Father not a hair can fall from my head; indeed, that all things must work together for my salvation. Therefore, by His Holy Spirit He also assures me of eternal life and makes me heartily willing and ready from now on to live for Him.

I love how dwelling on the Gospel just pulls me back into sanity. When I started this post, believe me-- I was NOT there. (isn't life like that? We live with a constant need to be reminded of the Gospel.) So thankful for the Holy Spirit, who calms and comforts us with the truth when we are so prone to wander.

smile & say cheese!...

Standing still & smiling to take a picture. It's a learned practice, not to be taken for granted. Recently I've figured it out!


And OH, the smiles that get captured!


Like the scrunched nose & face one... (ouch! that one looks like it hurts!) :)


Notice this sweet smile with the shoulder raised... :)This weekend we were SO blessed to see 2 sets of our former RUF students from Texas Tech. Josh & Chelsea (pictured here) are in the D.C. area for an internship & drove over to our place for a fun overnight. Being with them made Mommy miss all of our old friends & students from Lubbock. There is just something so healing about laughing with friends about old times together, wouldn't you agree?

We LOVE seeing our students long after they graduate from RUF getting connected into local churches, loving the Lord and reaching out where they are. Both couples we saw this weekend are wonderful examples of God's grace. The measure of success for a campus ministry like RUF doesn't really come until 10, 15, 20 years down the road until we see what kind of teachers, doctors, businessmen, elders, moms & dads it produces.


And Josh & Chelsea got me this GREAT book that I'm obsessed with now because the animals move as you turn the pages! (please also notice the ability to stand and "model" the book for a picture, too...)


And I'm not the only one on my street figuring out this picture taking thing! SMILE!!

on the road again...

(warning: if you have a problem with the mentioning of my child's poop, then you probably don't want to read this post. I'll understand.)


I have never been so emotionally drained and yet full of hope simultaneously as I am right now. Where do I even begin? Let me see if I can explain.

Okay, so if you've been a follower of this blog & the rollercoaster ride we are on (otherwise known as our life), you might remember back to a month or so ago when we had the major turnaround & improvement almost immediately after starting zinc, right? Things started looking up at that point. Suddenly we went from NEVER having seen a "good" poopy diaper to 100% consistently perfect ones every time! It was amazing. (I know that is so wierd, but when you've got intestinal problems, poop is the clearest indicator of what is going on in your system. Not only have I become an expert in nutrition, but I can probably tell ya more than you ever wanted to know about poop now, too!) :)

Then we went to Texas, & Caroline came down with that wierd infection of her salivary gland and we needed to treat it with an antibiotic.

The antibiotic was great. In a matter of no time it wiped out the bacterial infection and the swelling in her cheek went down. We are so thankful that it was resolved rather quickly & that we have wonderful medicines to knock out the bacteria causing the infection. The only thing is...

While we were on the antibiotic, we noticed that the diapers began deteriorating again. And in the weeks to follow, we've felt like we were back to square one. That's the good & bad of an antibiotic-- while it wipes out all the bad bacteria out of your system, it also takes out all of the good stuff, too. That's why you've probably heard recommendations to get on a probiotic or eat yogurt after you've been on an antibiotic-- it's so you are literally combating the ANTIbiotic with the PRObiotic. (and by the way, if you are going that route yourself-- just ditch the yogurt and go straight for a good probiotic, preferrably one that requires refrigeration and has more than just one type of "strain" of good bacteria. Most yogurts are PACKED full of sugar, which is what feeds the yeast bacteria you are trying to kill off and avoid in the first place. Sugars-- even those of fruits & carbs-- keep yeast alive, so for people with yeast problems they need to be severely limited after antibiotic use in order to prevent yeast overgrowth. I remember the infertility clinic printing this stuff on all of their literature before we began a treatment cycle...)

Okay, so when you've got a problem with yeast, whether it's a yeast infection in women or a yeast overgrowth in your gut, you're prescribed an antifungal medication to fight it. And our doctor gave us the safest one out there- doesn't even get in the bloodstream. And in all the literature, all the websites, all the doctor's instructions, it explains that there is an initial "reaction"/adjustment period (usually somewhere between 7-14 days) where your symptoms get WORSE before they get better. Well, that is one thing to KNOW in your head. And a completely different thing when it is happening right in FRONT of you.

And sure enough. There it was before our eyes. TERRIBLE bright red eczema flare-ups all the way up and down her legs & arms like we'd never seen before. WORSE. And irritability. INCONSOLABLE-rolling-on-the-floor-screaming. Hysterical at the drop of a hat. TOTALLY out of control at times. Where did my sweet child GO?! It has been utterly heart-breaking and so painful to watch. (not to mention physically & emotionally exhausting.) And even after KNOWING this was going to happen and being told that when/if it DOES happen, it is a GOOD sign, (?!?) I STILL doubt it. THIS is supposed to be good??? Oh, today did NOT feel good. I know it's supposed to be "tough love" to keep going on this medicine & trust that things will adjust soon enough, (though the "mama" instinct in me says we're dropping the dose down a bit) but I can't bear to see the child I LOVE so much be so miserable and out of control. I mean, on our best days I probably second guess myself 100 times a day. But these past 5 days, I have teetered on throwing in the towel like never before.

And then came hope.



Suddenly when I ran my hand over her bald little head this week, it wasn't super slick anymore. I looked down and there were millions of little pore-like follicles appearing, like a giant army of minuscule dimples getting ready to CHARGE into battle! And if you click on this picture and look close enough, you'll see what simultaneously brings me to tears and gives me great encouragement to keep going: tiny white hairs (like peach fuzz!) beginning to surface. (when hair grows back in, many times it is white & hopefully it will get its pigmentation back at a later point)

And tonight... oh, tonight. After such a terrible day that included Marc & I sobbing over the bathtub together as we were FINALLY able to calm Caroline down out of hysterics, there was another sign of hope. The first perfectly solid & formed poop again. THANK YOU, JESUS. THANK YOU FOR GOOD POOP. THANK YOU FOR HAIR FOLLICLES. Those are two things I never imagined I'd be praying. (I look at other children now who all have beautiful heads of hair and think, "gee, I hope their parents are just SO thankful their kid has hair. I know I'd be.")

So who knows what tomorrow will hold. How much longer will it take before my child stops acting demon-possessed at times? Oh, we need grace and strength. And a WHOLE LOT of patience. But we praise God that it appears that He's using all of this pain and misery to bring us BACK on the long road to healing and recovery. (Thank you for praying!)

potential future career paths #14...

Ooooooh....we found LOTS of ideas for future career paths at the children's interactive museum in our town today!


(in addition to having lots of fun as a family)

Think I could be...


A sprinter or a sumo wrestler?


A doctor, perhaps?


A stained-glass window artist?


A fisherwoman?


How about a dairy farmer?


Now it's your turn! You know the drill-- push the "comment" button & leave us your ideas for this picture & we'll pick a winner!

hands of love...

Okay, I (Amy) PROMISE this will not turn into a food blog. I swear. Boy, that would be the biggest joke in the history of the world! Yes, it's no secret that just a few short months ago, my culinary "expertise" was uh, slightly lacking. I didn't even know how to use a garlic press, people. (laugh away...) And now I'm cooking meals that are gluten-free, dairy-free, soy-free, egg-free, yeast-free, & practically sugar-free!?

But I promise this won't turn into that. First of all, I follow some food blogs. And those people can REALLY photograph food, can't they?? I mean, it's incredible how perfectly scrumptious their food looks & is presented SO well. My food pictures? Slap it on a plate, hold it up to the window for better lighting (if you're lucky) and hope the picture's in focus. :) ha! Evidence that I'm probably not ready to host my own Food Network tv show... :)

But leave it to your daughter's hair, eyelashes, & eyebrows falling out, and realizing you've got a serious malabsorption problem on your hand which is leading to all kinds of deficiencies and food intolerances & an immune system that is totally out-of-whack, and isn't it true you'll do anything & become anything for the one you love? And in my case, I'm quickly learning the art of allergy-free cooking. Cooking for health.

And to my sweet Caroline-- one day I hope and pray that you will read all of these posts not to laugh at how bald your head was or what kind of food you had to endure when things were at their worst, but I hope you'll see that
in every picture,
in every meal,
and in every word
you were extremely loved.

God blessed our family SOOOO much when He brought you to us, and He knows what He's doing through all of this, even though we don't. His hand is on you, sweet girl. I must remember that. You are mine, but ultimately, you are His.

Prepared for you this week with hands of love...


lamb chop, fresh local green beans (just snap 'em & boil in water for 5-6 minutes & top with salt & pepper), & carrots


Zucchini muffins! (made with quinoa flour-- "KEEN-wah"-- I know. Sounds wierd. I had never heard of the stuff before this, either.)


Beef vegetable soup with a side of butternut squash topped with our dairy-free & soy-free cheese! (so yummy!)

And my crowning achievement of the week...


PIZZA! (and she LOVED it! yay!) Seriously, this was a super-proud moment and probably up there in the list of achievements in my life. Who'dda thought I could make an allergy-free pizza!? And I can't believe how easy it was to make the dough for the crust (3 minutes with quinoa flour & a few other ingredients) and how yummy it tasted, even without tomato sauce! (used olive oil instead)

Alright. Enough of the food stuff. Can't help it, though-- it's so consuming! (ha ha No pun intended.) :)