Thursday, October 9, 2014

Praising God in the Hard Times

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You've been challenging this year. Summer took us on a wild medical ride with our son and while it's slowing down, we know that it will pick up pace again in the coming weeks when he gets admitted to the hospital. 

But instead of focusing on ALL that is absolutely freaking me out, I'm going to focus on what I can give thanks for right now--the newest of news--Gavin's 5th wean off of steroids! It started like this:

He was super tired and slept all day for a week.
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And he needed this (IV fluids at home) and he wasn't too happy about it.
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But, Praise the Lord, now he looks like this:
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And today is Day 11 of NO oral steroids!!!!!!!!!!!! 

And I have to scream PRAISE GOD from the rooftops because we've been on this road with high-dose oral steroids for FOUR MONTHS! This is the 5th time we weaned off of it, and we've been pleading and begging and praying our hearts out for Gavin to be able to get off of them--and so it seems that the 5th's time a charm. Yay! :) 

We SO pray that it lasts!!

There's A LOT on the horizon in the way of invasive, painful or otherwise annoying medical testing because of all these new symptoms he has developed in the past 4 months. It starts next week and continues through the end of October.

I won't get into what it all is and how long the list of tests to do continues to grow or how much this pending stuff --what our sweet boy will endure and what the results may or may not be--is overwhelming me. I won't discuss how much it sometimes freaks me out if I think about it too long. I won't write about how said I am that he doesn't get to have a normal childhood, and I won't dwell on my question of how many things can one child have because I know other children have it worse and my heart breaks for every single one of them. It's tempting to give into self-pity, anxiety and even depression when the oceans of life rage but in Christ, we are to give thanks IN ALL circumstances. We are to always be FULL of JOY and we are to NEVER stop praying.

How is this possible in the midst of suffering? It requires a flip in perspective. It's a difficult flip to make but it's a necessary one and it involves listing what we are thankful for IN the hardships. I got some of the idea from One Thousand Gifts, a combination of Bible verses, the experiences and wisdom of others, and what the Holy Spirit has placed on my heart. This quote from One Thousand Gifts that I designed helps me a lot and it explains this concept in a simple yet profound way.
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So what I am going to get into is what I am thankful for IN all of this. While it's been hard and tears have been shed, it's also been good. The Lord has been with us every step of the way, and I trust that what He allows to happen will be used for our good according to His will that is at work within us. That alone is enough to be thankful for, but He has blessed us with more....

Here's my list for now intermixed with new ocean photos, because--well--it just isn't one of my blog posts if it doesn't have any ocean photos!
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1. Day 11 off of oral steroids---PRAISE GOD!!!!!!

2. His esophagus, stomach and intestines are showing signs of healing now that he is off of 4 months of high dose oral steroids....and no gastric emergency occurred while he was on them. What a huge blessing! 

3. His body is adjusting well to being off of steroids. His systemic disease, which includes his respiratory symptoms that made him start them in the first place, has remained under control. Praise The Lord!
First he slept all day and barely ate anything for about a week (normal side effects of going off); I was concerned but knew he needed to be allowed that time to let his body adjust. However, just yesterday was his first day of no nap--just a regular amount of sleep in one night--and he ate his first real meal! Yay! :)
While he hasn't had the energy to go do anything outside of our house, we are thrilled that he is well inside of it and that he hasn't needed to go back to the hospital or re-start the drug.
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4. He's been off of Reglan for over a month because it may be the cause of some of his new neuromuscular symptoms--while we still aren't sure, I have to acknowledge that we never thought he'd be able to function off of this med without getting very sick--he was never able to before! We prayed and The Lord graciously sustained him; it's the only logical answer to why this is working and we are SO thankful. 
While he needs more Zofran to prevent nausea and vomiting since stopping Reglan, he hasn't needed to exceed the maximum amount allowed per day, it has successfully prevented him from vomiting, and it isn't an FDA black box medicine like Reglan is. He also still can take ErYPed for his poor motility, and it helps some. For now, it's a better solution and we pray that he can stay off of Reglan forever.

5. While he has a tremor in his hand and fingers, it's only in his hand and fingers and it occurs with use, not at rest. And it doesn't occur all the time; it varies in intensity. This rules out a lot of serious neuromuscular conditions. Praise God! While it requires more effort, and he does get frustrated at times, he is still able to write and play Legos, and use both hands and fingers for fine motor activities. So while it's concerning, it isn't preventing him from doing what he ordinarily would be doing without it. That's a blessing.

6. While he has a muscle jerk in his right arm, it too is infrequent, and it's way more infrequent than the tremors. I'm so thankful it isn't as severe and that it doesn't require medication. We pray it never does. 

7. While he gets headaches and joint pain, they too are infrequent and not constant. It is treated with only Tylenol and that, so far, has been enough which proves it isn't severe. We are so thankful that it's easily treated and that it doesn't occur often--we also praise God that it can be used by our son as an indicator to rest.
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8. Gavin has a mostly great attitude throughout all of this. He doesn't sulk or pity himself--he doesn't dwell on what he's missing out on, in fact, not only does he not think about it, he doesn't seem to even care. He might get sad or mad for a couple minutes once in awhile but then he completely lets it go on his own and goes back to being perfectly content with what he can do. He can do very little outside of our house, yet again, he's perfectly content with it; the Lord is using it to humble and teach me in a ginormous way!

9. We may be sick but we get to spend a lot of time together. No explanation needed on how big of a blessing this is!

10. Even though he has a lot of testing to do, he has been blessed with great doctors, a great hospital that is capable of treating all of his rare and difficult to manage conditions and diseases, and a great insurance company and case manager that approves all non-contracted doctors for free because they know that it's what is best and safest for our son. I can't imagine his life without the meds he needs to live, without his doctors that understand his diseases and know how to treat them, and without a hospital that is a safe place for him to be. I can't imagine having an insurance company that doesn't allow him to have what he needs and I can't imagine this life without an insurance company with affordable rates. We praise The Lord for all these things and pray for those with this disease, and many other rare ones, who don't currently have these enormous blessings. 
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Another way that I cope when I am anxious, sad, overwhelmed, mad, etc. is with worship music. It's balm to my hurting soul. I have SO many favorites but here is a phrase and print from one of them:

"His Love Never Fails" by Jesus Culture
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{This print and the above ocean photos are available in my Etsy Shop}

Having said all that, please pray for Gavin and for us in the coming weeks. And I hope that you can find things to be thankful for in the midst of whatever hardships or challenges you are facing today. If you'd like me to pray for you, leave a comment with your request.

I'll end with a picture of my two favorite girls. It has nothing to do with this post other than it being another thing I am thankful for: taking these two to the beach to take pictures so that I could give them photography lessons at one of my happy places at sunset...not alot is more fun than that :)
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Happy October to you all!

Tuesday, September 16, 2014

Ten on Ten-September

This might be my first "Ten on Ten" post and I am excited that I finally remembered on time! :)

School is going well...Chelsea loves her new two day a week homeschool co-op (her and I work at home on the other three days a week) and Gavin and I are loving our full-time homeschool week together--it's the perfect solution to all I was struggling with last year.
But it wouldn't be nearly as goofy and happy without Starbucks :) A good latte from Starbucks makes me sane when I feel like I've lost my marbles (which happens a lot).
Gavin's been having a hard time medically but in our house, we always find a reason to be silly. We will always find something to laugh at. It's one of our unsaid family rules; it's one of the main ways we cope.
Don't misunderstand--we have our sad and mad moments and we don't pretend the circumstances don't exist when we laugh--the Lord just gives the ability to find joy in any and every moment--we choose to always look for it and He always allows us to find it.

Gavin is still weaning off of high dose steroids (hence the puffy cheeks) and although he isn't doing horrible, he doesn't feel great either. Having it be 100 degrees in our normally 70 something degree beach town doesn't help.
He saw a neurologist last week and was diagnosed with Dysautonomia (autonomic nervous system dysfunction) and Peripheral Neuropathy (a dysfunction in the peripheral nervous system). I wasn't surprised because it's common in the disease he has {Systemic Mastocytosis} but I have mixed feelings. It's a good feeling to finally have a name to all these odd symptoms that he has had--and I predicted that these two conditions would be what was causing them. There's comfort in getting what you expect, however, I am always bummed when it's been confirmed that he has even more to deal with and more to endure through on a daily basis. 

This line from my favorite song is so true and it is always a source of comfort;
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the Lord has been filling our life with His grace in abounding ways. He's been sustaining Gavin in ways that we didn't think possible and for that, we are SO thankful. 
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His great love for us never fails. Even when I get mad at Him, He continues to answer our prayers, provide for our needs, and He even grants us some of the desires that we have in our hearts. He is the true definition of unconditional love and it's humbles my heart daily.
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Everywhere I look, I see evidence of His glory and goodness; whether it be in the giggle of my children or in an insanely beautiful sunset at the beach,
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in the companionship of a good friend or a great worship song that speaks directly to my heart.
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It's sometimes seen in the quiet snuggly moments I share with my family or in the vulnerable tenderhearted moments spent with my husband.
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Regardless of which moment reveals it to me, through it, I am always given the courage to carry on and the perseverance to push through life's obstacles with faith.
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He's always around and as long as I continue to seek Him, I will always find Him.
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 And oh how I praise Him for that!

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Tuesday, September 9, 2014

Vacation, Medical Stuff, and Back to School

We took a family vacation the last week of August to our favorite beach camping spot (A.K.A. "Our Happy Place").

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I haven't had the chance to upload and edit all of the photos yet but here's two as a preview...the one above and this one below. Even though Gavin struggled medically throughout the first half of the week and it was super hot, we managed to make the best of it and enjoy our time anyway. More photos to come later.

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It's that time of the year--back to school--and I've loved seeing all the back to school photos on various blogs and on my Facebook newsfeed. We homeschool at our kitchen table but since we usually eat on our coffee table in the family room, I took a little liberty to make this look a little school-like but maintained a little kitchen-like look at the same time since it is in the main part of our house.

This is the main wall:

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I designed all the prints myself (but they are not all in my Etsy Shop yet--though they will be soon). My kids did the boxed canvas paintings. I took the wave and sunset photos and the world and US maps are both vintage wrapping papers from Paper Source--they are SO cute, inexpensive, and totally worth the purchase. I think I'd have them on my wall even if we weren't homeschooling because they are that cool.
The wall to the left of the main wall is tiny, so it only holds the US Map and there is a sliding glass door to the left of that.

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This is the little tiny wall that's to the right of the main wall--the entry to the kitchen stands between it. So this is all that fits on it...this awesome framed chalkboard that I got half off at Michaels and above it, I put a beach watercolor painting that Chelsea made on our beach vacation. I intend to frame it and hang it above the chalkboard eventually. The Be a Light to the World is by the popular Katie Daisy from the Wheatfield on Etsy. I LOVE her prints...and this one is awesome sauce.

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Our rules this year come from a Charlotte Mason quote and I use this print that I designed (two different ones are in my Etsy shop) as a visual reminder of what they are.

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They are as follows:
1. I AM a child of God and I was fearfully and wonderfully made by Him for a purpose. 
2. I CAN do all things through Christ who gives me strength. 
3. I OUGHT to do my job so that I will obey God and my parents. 
4. I WILL keep watch over what I say and think and do what's right even if I don't want to. 

I love it, especially because my boy memorized it and whenever he is doing something that is the opposite of what this declares, (for example, he says he can't do something because it's too hard), all I do is point to the "I CAN" on the print that sits in front of where he sits at the table, (it's also framed on the wall), and he remembers that it stands for "I can do all things through Christ who gives me strength" and so then he says "Okaaaaay", and starts to do it. I love it!   

Here's some close-up photos of the art on the main wall:

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Above: The "Courage, Dear Heart" (far right) is a C.S. Lewis quote and we are reading his books this year--his biography and The Chronicles of Narnia. The print with a solid jagged yellow background to the left of the world map is a Corrie Ten Boom quote and we are reading her book, The Hiding Place, this year. Two of the three Bible verses (middle and bottom left) are from the Charlotte Mason declaration. The third Bible verse has been our theme verse from the beginning of homeschooling (top right).

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Gavin and Chelsea are being homeschooled differently this year, and so Gavin started first....one week before Chelsea did. So this was from Gavin's and my first day.

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Gavin and I are having a lot of fun together this year so far (even though it's been one week) as we've finally found our groove--what works and what doesn't--and I'm only sticking to what does. The best curriculum decision we ever made was to start using All About Reading. 

Since Gavin has dyslexia, saying that reading was a struggle would be a vast understatement. Before choosing to try All About Reading, there'd be more days where we both cried in frustration than happy ones like you see below--and ALL our days with this curriculum have been just that--happy! He's learning a lot while having fun and he's an official reader now that we are well into our level 3 book (we started it at the end of 2nd grade and just ordered level 4--so we are about half way through level 3 right now); I couldn't be more thrilled.

(the following our instagram photos)
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Gavin struggles in writing as much as he does in reading because he has dyslexia. So to take the pressure off and to change things up, I write a note for him on a dry erase board ever morning before we start school. My writing is in red and I leave a space in between each line where he copies my writing with a green dry erase marker--but not until after he reads it to me! So it's a good morning "warm-up" that attacks his two most challenging subjects--reading and writing--but in a way that he thinks is fun and sweet. He gets excited to see what I wrote to him and he works ever so diligently to copy it just so.


It's going really except for one thing--he's developed a hand and finger tremor and sometimes his arm muscles jerk away--we don't know what's causing it and he's scheduled to see a neurologist for an evaluation this month. As you can see below, his hand started shaking by the time he got to the last line but it wasn't as bad as it has been at other times. I still think he did a great job though! :)


As you can see, he is mostly happy about school....at least in this picture. :) Overall, he loves it, he loves being home and having me for a teacher--he flat out refuses to go to any school or co-op which is kind of good since he can't handle it medically anyway--but he gets tired easily, and has masto and neuro issues that creep up on him while he works and that frustrates him. Since he's still weaning off of steroids, he also gets tired easily. But we are re-starting IV fluid infusions on him this month in the hopes that it will help.


Chelsea had her first day of school yesterday; she is going to a homeschool program like she did in Kindergarden and 1st grade--she goes on Monday and Wednesdays and homeschools on Tuesdays, Thursdays, and Fridays. We homeschooled full time for 2nd-6th grades but now that she is a 7th grader, we decided it would be a good fit for both of us now, and I am happy to say it is. 
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She had a fabulous first day! :)

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While Gavin is starting IV infusions, has a big almost week long inpatient hospitalization coming up, a ton of doctors appointments and testing to go to, and I am still designing and doing photo shoots as a family and child photographer (Whew! That's alot!), I am optimistic that this school year will be the best one yet.

I love having one-on-one time with Gavin two days a week and I love how independent Chelsea is with her schoolwork when she is home now that I am not her only teacher and she is a big 7th grader.

It's a lot less stressful for me now that I don't have to split my chronically ill, always fatigued and ADD self so much between two really needy kids. As a result, Gavin now gets to have "the best of me" as a teacher like Chelsea got to when she was his age and he wasn't in school yet.

So "Cheers!" to a new school year, and may it always be this awesome! :)


Wednesday, August 20, 2014

Stream of Consciousness


So it's been a crazy medical month.

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Gavin is still on steroids. I know I haven't blogged much, but he's been on them for almost 3 months to no avail. He's had a TON of doctor's appointments and he has a TON more.

It's crazy because we had almost 18 whole months of greatness--it was almost like he didn't have a disease as long as he took all of his meds--and then BAM! The good stability decided to take a hiatus. We SO hope it's temporary, but in the meantime, we're fighting the good fight.

Tim and I will be taking him to our children's hospital for all day cardiac and pulmonary (lung) testing and an IV start on Friday. He will also get at least 1 liter of IV fluids to help give his body a boost. We are using regular IV's instead of getting an 11th PICC line for now and we will see where that takes us. We are hoping since summer is ending, he will get better and we'll get away with not needing to place his 11th PICC line because summer, with its heat and humidity, has always been his biggest masto trigger since he was a baby and it's now coming to an end.

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Unfortunately, he will need to be hospitalized again in the next month or so for a ton of testing that involves taking internal tissue biopsies inside his throat, airway, lungs, esophagus, stomach, and intestines under general anesthesia. Because he has Mastocytosis, he has to be admitted at least one night prior and stay 1-3 nights after. They also will be measuring his gastric acid levels with a probe that goes down his nose into his esophagus and stomach for 24-48 hours (he will hate that part the most), and evaluating all of his new and troubling and persistent symptoms that forced him to start high dose steroids almost 3 months ago so that we can hopefully determine their cause and dare I say, find a treatment that doesn't involve steroids? Lord-willing!

The kicker is that he has to go ON high dose steroids before ANY procedures, so even if we successfully get him off of them, and if it's scheduled after that happens, he'll have to go back on them to protect him from Mastocytosis induced anaphylaxis to anesthesia and all the stress of the procedures on his body, and then wean off again.

It's a lot. And the extra bummer part is that his "Weaning Off Of Steroids" schedule has him completely off of it right after school starts. Not a fabulous time! But at least we homeschool. :)

AND it will be our **5th** attempt. The first 4 attempts to go off of them failed and the 4th one was such a miserable catastrophe of a failure that we had to rush him to the ER and he ended up getting admitted for a few days in order to re-stabilize him with even stronger IV steroid doses and round-the-clock IV fluids (it was a few weeks ago). Then he was discharged and put back on high dose oral steroids for the 5th time.

So for this 5th attempt at getting him off of them, we are going to use IV fluids to try to help his body remain stable while it attempts to re-adjust and perform it's normal functions on its own without the help of steroids.

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This is the first time we are going to use IV fluids to ease the transition on his body because his body has clearly demonstrated over and over again that it can't handle being off of them, at least without assistance...so we SO hope and pray that THIS time will be THE time that WORKS.

IV fluids has always helped him before; that's why he's had a port-a-cath and 10 PICC lines. We've been using IV fluids to stabilize him since he was 18 months old and he's now almost 9 and a half. It helped him tremendously in the hospital a few weeks ago and we SO pray it will help him now.

I've been kind of an emotional mess about the whole thing though. It's really hard to see my sweet boy get so sick again when everything was under "control" for so long. He was doing so well he had gotten down to taking only 12 doses of medications a day--and now? He takes a whopping 38 doses a day of only the daily meds--add in the as needed meds which are now needed a lot, and it's upward to 45 doses in one day in one 9 year old body. 

I know that this is par for the course when you live with a chronic disease but it doesn't make it easier to experience. 

It doesn't make it hurt less. It doesn't take away my anger and frustration. It doesn't make me fear less; it just makes me more hurt, and angry and frustrated and fearful.

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However, I've come to recognize that fear is something I will always have to fight against--it's what I struggle with the most in this life--and this new flare-up is giving me the opportunity to strengthen my faith in the Lord all the more so that through Him and in Him, perhaps I will learn to not fear. It will likely be a life-long process--this learning not to fear part--but it's a lesson worth learning nonetheless.

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Now that Gavin is older, he has been able to express his frustration with it. That's good because he needs to be able to do that but it's great because it's been an opening to discuss a dependence on Jesus. That part is sweet, and even though he's expressed even anger at times, at what he calls his "stupid body" and his "stupid meds", (which makes me sad), he's also been able to shine in ways I admire. 

He generally takes it all in stride--not fearing--but trusting and assuming everything will always end up being okay. I love that about him; I have come to believe that children who suffer with a severe illness are given a very special personality from God--one that gives them what they need to endure and smile when an adult would curl up into a ball and implode. Every chronically ill child I have ever met inspires me to maintain a child-like faith, the kind of faith that is treasured in the Bible. Don't misunderstand, my son has his moments as he's human, but more often than not he just plain amazes me.

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Of course, since I have Mastocytosis too, the emotional and physical stress got to me and tipped my body over the edge.

Which means I got sick too--Mastocytosis sick AND a bad head cold turned severe bacterial sinus and throat infection sick; but with IV fluids through my trusty port, a lot of rest, extra meds, and now antibiotics, I am trying to recover from it.

In the midst of that, I have been preparing and planning for the beginning of our new homeschool year, doing photo shoots, editing photos, completing design jobs, driving my almost teenage daughter around to her various MSM events (middle school ministry youth group--super awesome!) and of course, being a nurse to myself and my son. Then there's the normal wife and mom stuff on top of all that.

C-R-A-Z-Y.

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So I don't have a lot of cute and fun instagram pictures for this post but we all know life is not always fun and cute and peachy. Sometimes it's hard and sometimes it sucks (please excuse the word if it offends you), but sometimes God is only able to teach us what He wants us to know when life is tough. So I'm keeping my eyes, ears, and heart open in the hopes that I will discover what He wants to reveal. 

Throughout all this though, I am encouraged most by the truth that this suffering is temporary--that this world isn't all there is--because as Christians, we always have the hope of Christ. We always have His promise to return and make all things new to hang onto. Romans 8 is a constant encouragement to me when I am down--it empowers me to trust instead of fear through the work of the Holy Spirit in my heart, mind and soul, and it puts our current suffering into perspective.

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Here's a snippet of Romans 8 but I SO encourage you to read the whole thing, especially if you are suffering today.




{Carla G. Design and Photography}

I made a song list on iTunes for when I am feeling anxious, discouraged and even depressed. One of the songs that's on there is a new one by Casting Crowns called "Just Be Held". It's on their new album called "Thrive" and it is AH-mazing. Anyway, the song "Just Be Held" makes me cry every time, but it's a refreshing cry that rejuvenates my faith and a cry that comforts me because the lyrics give words to the thoughts in my heart. You can listen and see the lyrics here, and I hope you do...it's beautiful.



I hope the lyrics minister to your heart as it does mine and above all, I pray that we all can be comforted by the Lord of Heaven and Earth....

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The One who made all this above and loves us more than we can fathom--even IN our earthly {but temporary} suffering.