Saturday, March 18, 2017

I am weak.

Yep, I said it.

Many Christ-followers would NEVER utter those words.
They see those words as a negative confession.

I learned from the best about positive and negative confessions when I spent my years in Tulsa, OK, attending a few mega-churches, and finishing my degree up at Oral Roberts University. Tulsa was the place for name-it, claim-it teachings and declarations.

The thought is that we "call things as though they are not" and we NEVER say anything negative, professing weakness and the like ... NEVER EVER. Someone might hear us, I guess. The devil might hear us ... like he doesn't know already that we're weak and we can fool him with our positive words about ourselves. 

Are they really simply positive words or lies?

There's a difference between stating who God says we are in His Word and simple lies.

There was a time when I bought into all this, but the last couple of years have taught me something different.

I remember, years ago, as I was leading a certain worship song in church, that there was some disagreement about the lyrics. The lyrics stated, "I'm so weak and You're so strong," and went on to proclaim how God lifts us up and gives us strength. We actually changed the lyrics to not sing the words, "I'm so weak."

I didn't understand that at the time. I didn't see what the big deal was in saying that I was weak because I am. I still don't understand the logic in it now.

Truth is: I AM weak.
Denying that fact just makes me a liar.
It's ONLY through Christ that I have any strength at all.
We can say whatever we want, but that doesn't change the truth.

Paul said it best ... 
Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. - 2 Corinthians 12:9-10

It seems that Paul actually "boasted" in his weaknesses.

That's how God shows His strength through us ... in our weakness. If we don't claim to be weak, how is God glorified?

I still catch myself correcting La Petite Belle when she says "she feels sick" or she says "she's sick." I say, "Don't say that." But, the truth is she is sick. Saying that doesn't negate the fact that Jesus paid the price for her healing. Saying that doesn't negate the fact that she is healed by His stripes. Saying that doesn't give the enemy any more power. Saying that simply means that it's Jesus who is sustaining her and making her strong through this.

So, maybe instead of boasting about how strong we are, we should be boasting in our weakness, giving God the glory for His strength which is what upholds us.

I understand the power in our words and I'm not saying we should be proclaiming negative things about ourselves because those would be lies. We should still speak truth in who we are as God's children but let's not try to hide the fact that we have struggles. It creates this negative perception of who Christ-followers are. We are not perfect people, not in the least.

Proclaim who you are ...
loved, cherished, heirs with Christ, blessed, the righteousness of God, redeemed, forgiven, free, chosen, an overcomer. 
Say those things because they are true.
But, let's not deceive ourselves into thinking we aren't weak, that we don't struggle with all kinds of things like sickness. Boast in those, always remembering and proclaiming that it's God who makes us strong. We literally have nothing to do with it.

Many people have said the words, "You're so strong," to me, over these last couple of years.

My response: "No, I'm actually not."

That is the time I can boast in my weakness and give God the glory by letting people know that any semblance of strength that you see only comes from God. It's ONLY Jesus who picks us up, holds us up, and keeps us standing.

Our La Petite Belle is slowly making some progress. There are some moments throughout a day where she feels okay and she's not vomiting or complaining about her stomach pain. I'd say that's better than when her pain and vomiting were 24/7. She has days when she feels really bad and doesn't want to eat a thing and other days where she feels pretty decent and attempts to eat. 

This was one of those good days. She was able to get out and even ate a cup of frozen yogurt.

We have another appointment scheduled with the GI motility specialist at TCH, but weren't able to get in until late April We're hoping he can help so that La Petite Belle can feel okay an entire day and not just parts.

We still spend three days a week at the hospital for a BMT clinic visit and dialysis. Although the renal team has already spoken to us about a future kidney transplant, we still hold on to hope that her kidneys may still recover. There is some function to them related to fluid because she is and has been producing urine for some time now. Her blood is just not getting cleaned.

La Petite Belle has a physical therapy evaluation this coming week. It's the third time we've had to reschedule due to unexpected hospital stays the last couple of months. We're anxious about this because we know that getting her strength back and walking on her own are so important for her right now. She is much stronger than she was and gets a little stronger every day. Her strength and endurance just need to be built back up and this will take time.

An unexpected issue arose last week when it was discovered she has a cavity. We're waiting for a consultation from a dentist. Her health situation will be tricky with treatment for this tooth. But, it's causing her a lot of discomfort. 

Beau and I still don't have jobs. Beau has sent over 100 resumes and I've sent at least over 50. Beau has been able to continue to play on some weekends and Wednesday nights, along with a few jazz gigs here and there. That's all definitely been a blessing. I've had two interviews, but no job offer as of yet. One of the interviewers said, "You're definitely overqualified." To which I said, "Yes, I know, but I just need a job." Who knew getting a job these days is so hard?! Or maybe it's just us right now. We're discouraged, but moving forward and trusting God to provide just like He's done. 

It's been difficult finding nurses La Petite Belle connects with and whom we feel comfortable leaving her alone with. We still end up doing most of the work and have to train the nurses on everything. Plus, La Petite Belle always wants us anyway. It just got to be so exhausting having the nurse here. I never imagined finding good home health nurses would be so difficult. Only one of the nurses sent to us would we ever consider more long-term. And, since we don't have jobs yet, there's no need for nursing help until we do. Who knows?! La Petite Belle may be strong enough for us not to need nursing care when we are finally working.

Thank you all for continuing to pray and stand with us. Believe me, I know this has been long and we don't have a clue of when it will end and normal life will begin again. We want to hurry God up so much, but that's just not how things work. I keep reminding myself to be patient in the process, as I'm reminding La Petite Belle, who gets discouraged and overwhelmed by all of this a lot.

We appreciate all your love and support! Please continue to pray for our precious girl ... complete healing and strength. Also, that God would continue to provide as we navigate what our life has become.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.

Tuesday, March 7, 2017

Contentment

I think I may have written about this very word before, probably more than once. The word is so daunting to me in these trying days. I keep coming back to it over and over and over again ... "be content, be content, be content."

The definition of contentment, according to Merriam-Webster, is not what I have always perceived contentment to be.

Contentment:
the state of being happy or satisfied

When I read this definition, it changes things for me. When I substitute the meaning in the Scripture I have been wrestling with for these last couple of years, it becomes even more difficult to wrap my brain around.

Watch this...

 ...  for I have learned how to be content with whatever I have. 
-Philippians 4:11b

Learning to be content with whatever I have ... whatever my circumstance ... whatever life throws at me ... in just the "whatever" has been extremely difficult. I struggle with quieting my spirit, shushing my mind.

But, here, Paul says that whether he's in need, or in plenty, he has learned to be content in it.

I always thought being content was just being able to cope with a situation, not complaining, waiting it out quietly, but, I never imagined I was supposed to be happy, much less satisfied in it.

...  for I have learned how to be HAPPY with whatever I have. 
-Philippians 4:11b

...  for I have learned how to be SATISFIED with whatever I have. 
-Philippians 4:11b

What a difference a word makes!

I must confess that I am neither happy nor satisfied and haven't been for some time. I am, most definitely, the opposite of happy and satisfied.

I don't know how to be that.
I can put on a good face, but inside I'm filled with sadness. Still broken. Working as hard as I can to be content. 

I realize that this is an impossibility for me. It's totally possible when life is filled with blessings and life is good. But, I truly find this to be impossible feat for me.

Then, my husband, the wise Bible scholar that he is, pointed out the rest of the Scripture to myself and La Petite Belle a few nights ago. This particular night, La Petite Belle was in increased pain and had been crying most of the day.

... for I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything through Christ, who gives me strength. Philippians 4:11b-13

My husband pointed out to me that the verse, we, as Christians, always quote and speak out like some sort of victory chant and mantra is actually not about just being able to do anything and everything with Christ at your side. 
It's about the struggle.
It's about making it through the struggle and the trial.
It's about Jesus, not me.

Whatever the circumstance, no matter how hard, I can have confidence in the fact that He will not leave me to make it through on my own. Honestly, I don't think I could make it on my own at all. Without the hope of Jesus, without the strength He provides through these times, I would be lost in this.

The contentment comes only through Jesus.
I am unable to be content on my own.
But, when I refocus my attention onto the One who holds every moment we are facing His hands, I can rest. I can be satisfied. I'm still not sure about the "happy," but satisfaction and rest will suffice.

In this moment, I feel content. But, in five minutes, I could be out of my mind with worry and anxiety. It's the circle of life right now.

Beau and I are desperately trying to be content not knowing where our next dollar is going to come from, not knowing if one of us will be employed any time soon, not knowing when our sweet girl will be completely healthy again.

Today, we are inpatient again. Good news is that it's not because La Petite Belle is sick, but she has thrombosis in the vein where her PICC line was placed. She has to be inpatient to start a blood thinner so that they can monitor the levels in her blood. As soon as the level is where they want it to be, she can be discharged.

Of course, La Petite Belle wasn't happy about having to get admitted yet again. She cried. But, I just kept telling her she wasn't getting admitted because she was sick so that was a definite positive. And, it's going to be a quick stay ... another positive.

She cheered up later on and actually wanted to eat. Chicken fried rice and a California roll was what she wanted, so that's what she got. She ate quite a bit compared to her usual diet of nothing.


I would say it ended up being a good night.
I went to bed content.

Today, she woke up with some discomfort and vomited. She's been sleeping ever since.
That's when the contentment gets hard.
But, thank God our circumstances don't change anything about Him.
When our life is good, He is good.
When our life sucks, He is good.
And, in either scenario, He is in control.
I am learning to be content in that.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.


Monday, February 27, 2017

Reminders

I remind myself each day to be patient.
I remind myself that healing takes time.
I remind myself that the only way forward is one step at a time.
I remind myself to celebrate the baby steps.
I remind myself to treasure each moment we've been given.
I remind myself that God is in control and has been all along.
I remind myself that nothing on this earth lasts forever.
I remind myself to look at this season, these circumstances, our life right now, through the lens of God's truth, and not focus on the very real challenges we see with our eyes each day.

With that said, our girl showed how strong she really is this past Thursday when we went for a walk outside in this beautiful Houston weather.


Every day that La Petite Belle has energy or feels well for a few hours, we take full advantage of it. She loves to be outside, to feel the sun on her face.


Thank you for continuing to pray for our sweet girl. She is getting stronger each day as we've been outpatient again for almost a week. As you remember us, please pray for complete healing throughout La Petite Belle's gut and an increased appetite so that she can really start to eat and heal. Pray for her nausea to be gone and continued recovery for those kidneys. Also, pray for guidance for Beau and me, as we continue to search for employment.

Despite what doctors may say, I am choosing to believe that God has and will continue to heal La Petite Belle. It may not be as fast as we'd all like it to be, but we will continue to thank God for the healing He's provided.

I remind myself that He is the only One who can heal.
How He does it is up to Him. We just have to trust.

I remind myself that He loves La Petite Belle and wants the best for her.
I remind myself that He loves our family.
I remind myself that His plans for us are always for good.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.


Sunday, February 12, 2017

Sunday Mornings

We made it home yet again on Thursday evening. I want this discharge to last so much longer than all the last ones. I want it to last forever. I don't want to go back to that hospital. Is it okay to say I love and hate that place at the same time? Well, I said it. I love the people who have helped La Petite Belle and us through all of this, but I hate all that's happened to her there. I hate seeing so many children suffering, day in and day out. I hate seeing so many parents lose their children. It's become just a depressing place for me, for all of us. "Home" in our little one-bedroom apartment is so much better. There's simply a peace here and some tiny form of normalcy.

As I sit at my computer on this Sunday morning, I can't help but reflect on how my Sunday mornings used to be. They were busy. As a family in ministry, Sunday mornings were sometimes stressful, especially when one or all of us were serving in the church in some capacity. Sundays were long. We were always exhausted after church and took family naps when we could. Sometimes these naps were three hours long. I remember waking up so refreshed and spent the evenings with my family ... being lazy, being silly, but also preparing for Monday morning and the start of a new week.

This Sunday and the Sundays for the past almost two years have looked incredibly different. The only similarity is how exhausting they can be ... more emotionally than physically.

This Sunday morning {Beau has been playing for worship at churches around town as much as he can. This has been a tremendous blessing to our family.}, I woke up to La Petite Belle's cries to help her get to the bathroom. 
I helped her back to bed. She complained, as she does every day, of her stomach hurting. She vomited three times. I cleaned her up. I got all her meds ready for her to try to take. I did an IV push of medicine. I got the walker so she could get to the recliner and held her bag of TPN as she walked this short distance. She moaned for a few more hours about her stomach. I gave her extra anti-nausea and pain meds, hoping this would help. I begged her to try and eat or drink just a little something to help. She refused. Her mouth/throat/lips still hurt, making it hard to swallow. Because of this, her desire to eat has diminished even more. Finally, the meds have kicked in and she's napping. I sit here, praying that when she wakes she will feel better ... that we'll have a few good hours, maybe more. A good day would be fantastic! That's Sunday morning now.

We try to take advantage of any moments where La Petite Belle does feel well. Yesterday morning was similar to what I described above, but by afternoon, she was asking to go to Target. She wants to get out. She wants to go anywhere else besides the hospital. Even if she's feeling sick, she still wants to try to enjoy each day. La Petite Belle loves spending time with her family so much that she will try so hard to suppress her feelings of nausea and pain. I've seen her do it over and over again. Even when she feels miserable, she pushes through as long as she can to be with us. She wants to feel "normal" again, to do "normal" things.

We stop whatever we're doing when she has these urges and try to make the most of each day, attempting to bring some sense of happiness and joy into these moments.
We took our girl to Target yesterday. She's ALWAYS loved to go to Target, even as a young child. She would have Target dates with her daddy and Target dates with me. I think she just has some great Target memories and it's her happy place, just like most women everywhere.

The highlight of our trip was her riding in the electric wheelchair. She'd been wanting to try it.


She ran into so many end-caps and nearly took out a few kids.
We laughed. She laughed, which we hadn't heard much of lately.
This girl, who was once filled with joy, has become filled with sadness. As her parents, we try to pull that joy back out of her. It's hard to be joyful when you feel so sick.

About an hour into our trip, she got tired. Her endurance is pretty short. 
As she gets stronger, this will improve. Each day I'm reminded of how far she's come, but also how far she still has to go.

I miss our busy Sunday mornings. I miss church. I miss worshiping as a community. I miss K Belle. I miss family time. I miss laughing. I miss La Petite Belle.

I'm trying really hard not to live in the past. I remind myself that my old life is over, done, dead in the water. This is our new life. I'm working on embracing it, but even typing the word "embrace" doesn't seem right. Maybe "embrace" is not the right word. I think "hanging on" is more like it. I am hanging on to this extremely uncomfortable place where God has us for now. 

During this season, I hang on to Him. He's all I've got. No one else can drag me through this thing. I'd like to say I'm skipping through this season, but it's quite the opposite. He's definitely dragging me. Sometimes, I feel like I can actually get up and walk a bit, but then I get knocked down again. He comes in and picks me up. He carries me, drags me, pushes me. I know that He will get me to the other side. I just don't know how long it will be until I get there. So, I work on "embracing" ... embracing the fact that He's got us ... He's got La Petite Belle ... He will provide ... He will sustain ... He will restore.

We are working on attempting to get our girl to church. She wants to go so badly, but also doesn't want to vomit in service. I get that. Until then, we play worship music constantly. We read God's Word and His promises to her.  We continue to pray and trust God. We ask for His guidance and His grace. We pray for La Petite Belle's complete healing, no more pain, and strength that only He can give. Thank you for continuing to pray and agree with us! 
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.

Monday, January 30, 2017

BFFs

That's what La Petite Belle and I have become through this.
We were always close, but through these last couple of years, we've become glued together. Of course, this occurred unintentionally, but it's what happens when you're stuck together almost 24/7.

I would choose differently though.
Don't get me wrong, I LOVE that she considers me her best friend and wants me by her side. She sweetly put her hand on my cheek and said, "You're my best friend," a couple of nights ago. It made my heart swell. So precious. So loving. So sweet. So grateful that she loves me and genuinely wants me with her.

But, I'd rather her be kicking me out of her room because she wanted privacy, like a typical 16-year-old. I'd rather her be hanging out with friends her own age, having sleepovers and dance parties.

We had an overall good weekend here at the hospital. She felt mostly good with just moments or pain/nausea throughout the day. She and I had our own Netflix time on Saturday night, while she and Beau had theirs on Sunday night. All with lots of cuddling and Sunday night, she even ate a few bites. She claims that, while I'm her best friend, Beau is her boy-friend {boy best friend}.

We were able to get out of the hospital both days to get some fresh air and sunshine.
La Petite Belle has always loved the sun. She would spend hours outside, basking in it. Many of her days were spent at our neighborhood pool.
When we take her out, she loves to just sit in the sun. Once she gets into a little bit of sunshine, she says, "Ahhhhh ... the sun." And, then she asks us to just sit for a while.


While our weekend was good, this morning brought more pain for La Petite Belle. She woke at 6:00 am, crying in pain. Her abdominal pain had returned. She got multiple meds with not much relief. After three hours, she finally was able to rest. She has slept the entire day today.

Also, while her HSV virus is not detected in her blood and hasn't been for some time, her mouth, throat, and lips are still bothering her. She continues to get IV antiviral meds. We are unsure how long she will need to remain on these. While she's getting them IV, it's best that we stay inpatient. Otherwise, we would have to come to the hospital every day for an infusion. We were hoping that she would've been able to switch to oral versions of these meds by now. We are praying that this week will be the week of major improvement in the healing of her lips, mouth, and throat.

Her sinusitis seems to be better. She was started on a new antibiotic last week that seems to be working in draining all that mess. Her sinuses have been totally clogged on one whole side of her face. The antibiotic is supposed to allow this all to drain.

The great news is that her hemolysis seems to have gone. She is getting her last dose of immune suppressant this evening and hasn't needed a blood transfusions for over two weeks. Thank God for that!

This pesky virus seems to be what's keeping us here.
As you pray for La Petite Belle, please pray for this virus to be gone and her lips, mouth, and throat to heal. Thank you all for continuing to stand and believe with us for La Petite Belle's healing. We appreciate you so much.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.


Saturday, January 21, 2017

I wonder.

I wonder if we'll ever have a "normal" life again.

I wonder how long it will take for La Petite Belle to completely recover from everything she's been through. It seems like every doctor we meet says the same thing, "she's been through a lot."
That's the understatement of the year, actually the understatement of last year.

I don't bank on anything anymore.
When we got out of the hospital, kind of unexpectedly last Thursday, I thought maybe ... just maybe this might be the time we could possibly stay out.
Not even 24 hours later, we were readmitted. We were, once again, just getting all our home health things set up and I hadn't even been able to unpack everything from the hospital.

Even knowing that hospital stays may still occur for us from time to time, it doesn't break my heart any less for us to be back here. To me, each stay is a step back for La Petite Belle. She's stronger when we're on the outside. She's in better spirits when we're on the outside. We all get to be together as a family each night, sleeping in our own beds.

Our 19 hours out of here were pretty good.
La Petite Belle slept through the night after begging Beau to just stroll her through Target for a little while. Of course, I was not in favor of that, but let it slide, as long as she wore her mask.

At Target, she bought the movie, "God's Not Dead 2.," which we hadn't seen yet.

In between her morning clinic visit for an infusion, we were able to go back to our apartment for a few hours before having to be back at the hospital for dialysis. 
(This pic was taken as she slept during her early morning clinic visit.)

She wanted to watch the movie, so we did.
If you haven't seen the movie, there's a scene where a group of people sing "How Great Thou Art," while holding candles outside someone's home. I looked over at La Petite Belle and she had both her hands raised, crying and worshiping. Of course, I, then started crying. I let the song finish and paused the movie, went over and hugged her, and asked if she was okay. She cried for a little while, and said, "I'm just ready for this all to be over."

That broke my heart. I told her we were so ready for it to be over too and that watching her in pain was tearing us up. Then, I simply reminded her of how much God loves her.

After the movie was over, we got everything together and headed back to the hospital for dialysis. Beau always pulls up under the hospital canopy and helps me get La Petite Belle into the wheelchair, then I roll on up to wherever we need to go.

As we were in the elevator, I noticed she had "passed out." The episodes she had on Friday were like the ones she had months ago, where she was "vagaling"{a response to pain}. Basically, her vitals stay stable, but she's somewhat unconscious. She usually would come to very quickly, but this time, she wouldn't respond to me. I rolled her into the BMT unit and got her doctor. She wouldn't respond for about 15-20 minutes. It was one of the longest episodes she's had. The rapid response team came and assessed her. At this point, the room was filled with people and I was outside the door, but I saw her raise her hands. They were just in the air. They told me I could go to her and when I asked what she was doing, she said, "God's not dead." This girl ... she truly loves the Lord.

I know and understand that we ALL deserve death, but our girl does not deserve this. She really is the most pure-hearted girl out there and she's always just wanted to devote her life to God. Hearing your child moan in pain and say, "Please help me," over and over is so hard. I definitely feel beaten down and tell the Lord that I just don't know what to pray anymore. I feel like a broken record. I know He hears. I know He sees. I know He is faithful. But, I am desperate for a move.

The response team brought her to the Emergency Room. She kept vagaling for a couple of hours and got lots of Morphine and anti-nausea meds. She's been pretty much out of it and sleeping ever since. All of the tests point to ... you guessed it ... nothing. X-rays and ultrasound show no change from the last time she got them and her labs were good.

I'm not sure what this pain is from. Neither do the doctors, which kind of makes it more frustrating.
So ... I don't know what's going on, nor do I know what the plan is, if there even is a plan. I don't know if this pain was just a passing thing and she'll be better tomorrow or if it's something we're going to have to deal with somehow. I do know that we aren't getting out of here until Tuesday, at the earliest. I'm hoping, yet again, that it's a quick stay.

I wonder about a lot of things about our lives.
I wonder about our living situation.
I wonder about future jobs for Beau and me.
I wonder how God is going to redeem and restore this.
I wonder when this will "be over" for La Petite Belle, as she said.
I wonder if we can ever just be a normal, dull family.
I would LOVE to just be a dull family ... boring as all get-out. That sounds fabulous.

I continue to put my trust in Him, knowing He has always been faithful.

Thank you for not growing weary in praying for us. I know it's long. It seems like it'll never end. But, I know we still have support and prayers for those who love and care for us.
As you pray, please just lift our girl. Pray for this pain to come to an end and complete healing.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.



Sunday, January 15, 2017

But, then ... Grace.

I feel like I've written about grace a million times on this old blog. Today is no exception because the concept of it blows my mind.

Grace = Unmerited Favor

Each day here seems to bring more problems and issues than resolutions and good reports.
After over a year of that, a person can get worn down ... more like beaten down.
When you live in that type of state, you feel if someone simply touches you, you just might shatter into a thousand pieces.

We've suffered a lot of loss, now going on almost two years ...
loss of health, loss of family, loss of home, loss of friends. loss of jobs, loss of finances, loss of normalcy, loss of dreams, loss of goals, loss of just a good old, plain, low-key life.
And, here I lay .... shattered again.

But, then ... grace.

When I'm shattered, lying in these pieces on the floor, not able to produce the strength to stand, struggling to breathe, heart crumbling yet again ... there is a grace that comes in.

It's not magic. It's grace.
It's a peace. That peace reminds me that God is carrying us. He won't stop carrying us.
And, each time I break, there's grace.

Grace isn't limited to a day.
God doesn't say, "Oh, sorry ... you've reached the capacity of grace that you can have today."
Some days I need more grace ... grace upon grace upon grace.
And, He freely gives it to me.

When we get another bad report, bad news, something goes wrong ... whatever the case may be, I try to take deep breaths, try to relax, listen to the doctors, but also try to drown out their voices by the voice of God, reminding me of His promises. 

Sometimes those God voices do get drowned out by the voices of others and words like "cancer" or "end-stage renal failure" or "she could die." That's when I break.

Sometimes I see my beautiful daughter, looking at herself in the mirror, cleaning her face for the day, staring, and crying at someone she doesn't recognize. Her heart breaks. She thinks she's ugly. She sees how people look at her. That's when I break even more.

When I break, His grace comes in and covers me.
I have this visual in my head of how my mom used to make the beds in the house, rolling and fluffing out this long blanket to cover it. Over and over again, the blanket would billow over the bed until it was finally perfectly covered, every inch underneath the blanket.
That's how I see grace.
God billowing this grace blanket over me, over and over again, as many times as I need it, until every inch of me is covered ... grace upon grace upon grace, whenever I need it.


There are definitely times we need more grace.
God has shown us His grace never runs out.
Even though we have been walking through the darkest time in our lives, He covers us. He goes before us. He prepares a way when we don't know how we're going to survive.

We continue this journey into a new year.
We continue to not know what's ahead.
We continue to trust.
We continue to receive grace upon grace upon grace.

The last few days have been more rough ones. The good days seem to be few and far between. However, the viruses that have been attacking La Petite Belle seem to be getting more under control. She's been suffering with quite a bit of pain from the esophagitis. It's painful to swallow. Her mouth and lips are getting somewhat better, but still hurt, with bleeding and ulcers. The stomach pain seems to have improved some. She's still not eating, but isn't requiring as much anti-nausea meds. We are SO ready for her to take a bite or sip of something besides water with her pills. The GI doctors alluded to possible bad news from the scope, once the lesions at the bottom of her stomach were biopsied. I had another one of those heart-sinking moments when they said they wanted to rule out cancer. Um what?

I felt our world crashing around us again. I couldn't even believe those words when none of our doctors had ever mentioned or suggested such a thing. Fifteen minutes later, the phone rang in the hospital room and it was one of the GI doctors, saying, after closer examination, they do believe that the lesions are a result of the viruses in her stomach. As the viruses go away, the lesions will too. 
My head was spinning.
Tears upon tears upon tears with grace upon grace upon grace.

We continue to sit tight here, waiting for these viruses to be gone. The anti-virals seem to be working. The doctors say it's usually about a 14-day course of meds. So, we wait. We continue to pray for her stomach to improve and for her to eat again. We continue to pray for her kidneys to recover and her to get stronger. We continue to pray for this hemolysis to stop so that she'll need less blood transfusions. We continue to pray for her spirit to stay strong and keep fighting. She's tired. We're tired. We're all ready for a breakthrough. 

Thank you for the tremendous amount of support and prayers you have give us over the last year and a half. I can't believe we're coming up on two years of La Petite Belle's diagnosis, still here, still fighting. It's only by God's grace that we are making it. We know that He will always take care of us, no matter how bleak things may seem. He is here.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.