Saturday, July 15, 2017

"A Rock and a Hard Place"

I used to use that phrase all the time ... "It looks like we're stuck between a rock and a hard place."

Recently, La Petite Belle looked at me and said, "Mama, that's my whole life."
She's right. How true this statement is.
Now, she says it every time we get bad news. She looks at me with that sassy expression and says, "Well, Mama ... it looks like we're stuck between a rock and a hard place."

Each time we think the rock may be moving, it crushes us once again.
We are trapped again. Unable to move.
At times, unable to breathe.
Despite how hard we push, the rock barely moves.

Exhaustion sets in.
We're tired.
All of us.
From pushing the rock.
From having the hard place up against our back.

My husband constantly reminds me that we have no control over our life right now, over La Petite Belle's health. The only thing we can control is how we respond to what we're facing.
Do we respond with faith?
Do we respond with fear?
Do we respond with doubt?
Do we respond with complete surrender?

I have to be honest. I don't always respond the right way. 
I've been angry. I've been sad beyond belief, a brokenness I never thought I'd experience ... total despair. I've definitely been scared.

Then, my husband again becomes the voice of comfort when he reminds me that, no matter what happens, La Petite Belle will always be okay. He says, over and over, "She wins!" 
He's right. She will always win.
She wins because she has lived her life desiring only to serve God.
She has lived her life loving God with all her heart.
Many people have expressed how much she has been an inspiration to them in their faith, but she has been an even greater inspiration to us as her parents. I don't even think "inspiration" is the right word. It's much deeper than that.
(She had no idea I was recording this video, as she asked me to play this song on repeat. She sang the words each time, half asleep, half awake, many drugs in her system.)

As we sit here, stuck, once again in this place, we just have to keep trusting. God knows best. He loves her more than we can imagine. He's a good Father and His plans for her and us are always good.

That's not a hard thing to say or believe. He is always good. I have no doubt about that. But, it still hurts my heart when I remind myself of this because my idea of "plans for good" don't look like this. It's hard for me to understand, but that's what trusting in God is all about ... not understanding His ways, knowing they're good, and trusting Him anyway.

We've been through multiple setbacks since I've last posted. Things change so quickly that I can't even keep up with posting updates. And, honestly, a lot of times, I don't want to post an update. I want to post good updates, updates of improvements and victories. I don't want to post updates involving bad news.

Instead of posting an update, with an overload of details of the challenges our girl is facing, I'm just going to ask you to keep praying for a breakthrough for us and God's best for La Petite Belle.
Thank you, once again, for standing with us!
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and expenses.

Sunday, July 2, 2017

Facing Facts

It's been over two years since we've been dealing with La Petite Belle's health situation. Most of those two years has been spent living at Texas Children's Hospital.

We know more than we care to know about the workings of the hospital. We know the procedures. We know what the doctors will say before they say it. We know how the hospital works, in general. We know a thousand and one ways things could improve. We know a thousand and one things that are great ... well, maybe just a thousand.

We are extremely grateful for this place, for the doctors, for the nurses. All have really become family to us ... as much as a family can be with HIPPA rules and regulations.

When you spend so much time in one place, little things start to annoy you, like the sound of the bell we have to push that allows us to get into the bone marrow unit. Each time I push it and hear the first tone, I want to rip it off the wall. I'm not kidding.

Let's not even talk about the security line you have to stand in if you're coming in after 9:00 p.m. It crawls at a snail's pace. Or how many times I've been asked if La Petite Belle's been immunized or if we're familiar with the hospital. Ugh ... read the chart, people.

But, I digress ...

Familiarity breeds contempt. It's a real thing. Really real.

The last few weeks have not failed us in adding to our standard exhaustion level. We've been in and out of the hospital each week. It seems like, as soon as the weekend starts to creep up, La Petite Belle gets admitted for fever. This is actually the first weekend in a while that we've all been home together, and we almost went to the emergency room earlier today (details to follow). Writing that statement at this time of the day makes me feel uneasy, because it could change at any given moment, and we could be rushing La Petite Belle to the hospital again.

I've been reminded lately about a post I wrote a while back, after La Petite Belle got diagnosed - It's a marathon, not a sprint.

We are definitely still running this marathon. The problem is I don't know what mile marker we're at and how far away we are from the finish line. At times, I feel like I can see the finish line. And, at other times, I feel like I'm sitting on the curb, hurting, not knowing if we'll move any further.

I'm coming to grips with the fact that we may be dealing with this for a very long time ... that we have to just try and live our lives in between times of not feeling well, hospital admissions, medical procedures, and therapies.

We did that last Thursday when La Petite Belle felt well and desperately wanted to get out. Each time she feels even a bit better, she pushes to have some enjoyment. We went to dinner and to the aquarium downtown. It was nice just trying to do something normal. It took a lot out of her, but this girl has such determination. Her desire to spend quality time with us and act like she's a regular teenager far surpasses some of the pain she's experiencing. I mean look how good she looked on Thursday!

As soon as we got home, she started hurting and the pain has only gotten worse through the weekend.
With that being said, I just have this feeling that La Petite Belle will be admitted tomorrow when she goes for her clinic visit and dialysis.

She's really feeling pretty bad and, and with her intensified back pain, she can barely walk. Hence, the reason by the almost emergency room visit earlier today.
Beau was working at a church this morning. La Petite Belle has been extremely weak since Friday, so she needs our help even more when just walking to the bathroom. It's hard for me to hold her up by myself when she is weak like this. Her norm has not been this way, but with this new back pain, it's getting harder for her to balance, much less make it from room to room. As I was helping her to get back to the bed from the bathroom, she, once again, became very weak and her muscles began to jerk and, despite my every effort, she fell on the floor. After that, she began to vomit and say I needed to call an ambulance because she didn't know if she could get up again or move at all. I called Beau and he rushed home. In that time that we waited, I cleaned her up and threw clothes on, planning to head to the hospital, as has become our regular weekend thing. After time passed, she sat up and said she was okay and not to call the hospital or go to the ER. Beau and I, together, were able to get her up and to the bed. I do think that something is different with her muscles, increased back pain, increased nausea and vomiting, not eating, and just overall weakness. She's not herself, even herself from Thursday. That's why I fully expect an admittance. She had no fever today, so I concurred and said if she could wait it out until morning for her clinic visit, we wouldn't go in. She, of course, said she wanted to wait. The hospital is the last place she wants to go, especially when she's overly tired and exhausted. There's no resting there.

I didn't imagine that my life would be waking up each morning and wondering what the health of my child would be for that very day, knowing that, in an instant, things could take a turn. It's sad to say that instances like what happened today are not unexpected. My memories from last year flood my Facebook feed, showing what a horrific time we had with her long PICU stays. Each day not knowing if she would pull through was heart-wrenching. This picture came up this week, and my heart ached like it did back then.

This was PICU. This was a daddy praying, crying, and then sleeping in this position over his daughter's bed. I took the picture so that I could show La Petite Belle how much her daddy loved her and how we were always there, even when she didn't know we were. During those days, when she was awake, she wanted us. She wanted our chairs right next to the bed and she wanted our hands holding hers. I remember these days, and thank God for how far she's come.

One of the hardest things is not knowing what will happen with each given day.
Will we have to rush La Petite Belle to the hospital?
Will we end up back in PICU?
Will she feel well today?
Will she beg us to let her sleep all day?
Will she feel good and want to take advantage of the moment by getting out?
Will she be sad and anxious and ask me to come home from work?
Will she get stronger today?
Will something bad happen that stops us in our tracks yet again?
Will we ever be able to take her back to our hometown as she's asked us to?
What will this day hold?

These questions and more go through my mind daily.

The future remains uncertain to us.
But, my hope is in the fact that it's not uncertain to my God.
I have to keep reminding myself that He sees us, He hears us, and He always has a plan for us that is for our good, for La Petite Belle's good.
I have to keep trusting in that fact.

The facts are that all this stuff is happening and continues to throw us for a loop.
No doubt about that. It's a fact.
But, the even greater fact is that my God is in control.

All we can continue to do is hope and trust.
Three years ago, I posted this statement:  "'Against all hope ... IN HOPE, Abraham believed.' There is hope in hopeless situations."

The full Scripture says this:
Even when there was no reason for hope, Abraham kept hoping—believing that he would become the father of many nations. For God had said to him, “That’s how many descendants you will have!” And Abraham’s faith did not weaken, even though, at about 100 years of age, he figured his body was as good as dead—and so was Sarah’s womb. Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises. And because of Abraham’s faith, God counted him as righteous. Romans 4:18-22
We hope. We trust. We believe. We stand.
Thank you for continuing to pray and stand with us.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and expenses.

Wednesday, June 7, 2017

"Do you have children?"

That's usually how it all starts.

I hesitate to answer sometimes, knowing that this one question could make the questioner sorry he or she ever asked. 

Yes, I have children.

The follow-up questions ensue.

And, after I've mentioned K Belle, Australia, and addressed the shock and awe of the possibility of me having an almost 20-year-old daughter, I mentioned La Petite Belle. More questions ensue ... how we came to Houston, our job situation, etc., etc., etc. 

At this point, I attempt to condense two years of suffering into a few minutes. It's pretty impossible. And, it definitely leaves the questioner in shock. Sometimes they don't know what to say. Actually, most of the time, they don't know what to say. I expect that. By now, I've had a lot of experience with that. I try to assure the questioner that it's okay that they don't know what to say and I don't expect anything out of them.

Just an everyday, getting-to-know-you "question and answer" can lead me to tears. It can lead the questioner to tears also.

This same question was asked by someone yesterday ... a sweet, innocent woman, making conversation. What was meant to be a few minutes of chitchat lead to close to twenty minutes of engaging conversation. Afterward, the woman said, that what I said to her "really ministered" to her and put a lot in perspective for her.

I get that. I'm thankful for that.
But, oh how I wish I wasn't the one who had to put things in perspective for people because my life seems so much harder than theirs. My life seems to cause other people to be thankful for the difficulties in their own lives. 

I'm thankful that God could use our circumstances to minister to other people, but, gosh ... I still wish it was different. Why can't I be the one getting things put into perspective by other people? I'd like that. I'm ready for that. 

This new reality of working an 8:30-5:00 job has been even more difficult than I ever imagined, especially with La Petite Belle being in the hospital again. I think about Beau and her all day long. I wonder what's happening. Not being there is definitely hard on this mama's heart, but this is where we are right now and we're desperately just trying to make this work. I just keep hanging on, waiting for life to change, for us to turn a corner.

I've been waiting to write an update until we had concrete answers as to what is going on with La Petite Belle, and now we do.

La Petite Belle was diagnosed with pneumonia over a month ago when we were inpatient. She was given antibiotics and seemed to get better and we were able to go home. We were home for almost a week when she spiked a fever. We ended up in the ER again and she was admitted yet again. Her pneumonia was still there and there was even chatter about removing her gall bladder. 

The gall bladder issue subsided. Thank God! That was not an option for our girl. But, the pneumonia persisted and showed not much improvement even with multiple antibiotics. After a week or so, and much discussion, the doctors performed a bronchial lavage and a lung biopsy to determine exactly what was causing this pneumonia. There are other types of pneumonia that aren't responsive to antibiotics because they are not brought on by bacteria or other types of infection. 

The biopsy revealed that the pneumonia La Petite Belle has is called Cryptogenic Organizing Pneumonia (COP). This was not the answer that we wanted. No one wanted it. The treatment for this is high-dose steroids. If you've followed La Petite Belle's story long enough, you know that this was treatment for the GVHD she had and lead to many more complications that she's still dealing with today.  The doctors are taking all of that into consideration when determining her dosing. But, this is the only treatment and it needs to get taken care of or it could get worse and even harder to treat.

It will be pulse-dosed, meaning one large dose once a week for at least two weeks. The doctors are hopeful that we will see some improvement after two weeks. Then, they will make a decision of how to wean the doses.

The danger with steroids is how much it suppresses your immune system. This leaves La Petite Belle susceptible again to all the viruses she fought last year (which live in her body) and any other type of infection. 

We are not expecting to get out of the hospital until La Petite Belle's need for oxygen is gone and her lungs are clear, at least anther week or two. When her lungs are better, barring no complications, we can be discharged again.

It's sad to say that hospital stays don't affect us as much as they used to. It's become our norm. La Petite Belle used to say, day-in and day-out, that she just wanted to go home. Now, she doesn't say anything and doesn't seem nearly as bothered by the whole thing.

She does miss Roxy Belle most of all and asks me if I can sneak her into the hospital sometimes. 

Granted, we all DO want to go home. But, we've become accustomed to this lifestyle. 
Is it difficult? Extremely. Is it exhausting? Definitely. But, it's what we have to do.

Please be in prayer for our amazing girl. She's still got more fighting to do. Pray that this pneumonia is gone quickly and the dosing of steroids can be minimal. Pray that La Petite Belle's body will not succumb to any viruses, bacteria, or fungus during this process. Pray for wisdom and guidance for the doctors as they make decisions regarding La Petite Belle's care.  

I ask also that you pray for another fighter ... Anais. Anais has her own story, but both of these amazing girls are fighting this same rare pneumonia, next door to one another on the 8th floor at Texas Children's Hospital. Anais' mom and I find it ironic that both of our teenage girls, who come from the same area of Louisiana, went to the same dance school for a short time, know so many of the same people, are now fighting this same "rare" pneumonia. Anais has also been at TCH for a long time and has recently undergone a second bone marrow transplant. 
As you pray for our sweet girl, please pray for Anais, as well.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and exp

Friday, May 26, 2017

He Is everything I’m Not, and I’m Nothing That He is.

So, a few things have changed in our world. Mama Belle is now working, and I am now Mr. Mom-ing it for the next few months or so. I’m trying to do some consulting things here and there, to be a blessing to smaller churches who can't afford a full-time media guy, plus playing a few jazz gigs and worship services as they come along, but, mainly, I’m La Petite Belle’s main caregiver.

This has its share of challenges for me.

I’m used to being the “fun” one. 
(Here she is dressed as me for the fall festival one year.)

I’m used to being the one the girls can look at and roll their eyes when Mama Belle turns Mama Bear. I’m used to being the one who earns the paycheck and controls the finances. I’m used to being in charge.

Even though we’ve been inpatient for almost all of 2016, and then over seventy-five percent of 2017, I’m still used to being out in the world, and not in the hospital. I don’t EVER want to get used to the hospital life. Never, ever. Never. Ever.

With all that said, this particular hospital stay has been especially tiresome and straining. I don’t have a job to go to. I don’t have other people to talk to. I don’t have my wife here with me, to take turns throughout the day. It’s all me, and it’s exhausting. And I know me, and I know when I’m reaching my limits with things, and I know that, although I can’t predict with relative certainly how I will react, I KNOW that I WILL react.

Tomorrow, three friends of mine are coming to visit me. They’re bringing handguns. We’re gonna go shooting and then consume large quantities of meat. I think I just grew a little more chest hair as I typed that statement (although, in full disclosure, the statement, as was the rest of this post, was typed on La Petite’s MacBook Air with a floral-pattern protective case). It was a comment in a text conversation with one of the guys coming that I got the idea to write this post. He wrote this:

“You set the tone when it comes to being a man.  The true definition of manning up!!!  You inspire others!”

Instantly, tears filled my eyes (as they are now, even as I type this out on the aforementioned girly laptop). People see me way differently than I see myself, and they don’t know what goes on in my head and heart, 24/7.

Here’s a prime example of my wonderful, bar-setting, inspiration-inspiring dad moments:

Yesterday, the physical and occupational therapists came over to do some work with La Petite. To say that she hates doing PT/OT is as much of an understatement as calling Drew Brees a “good” quarterback. And it’s the same old story with her, almost every time. She doesn’t feel good, she’s tired, she’s nauseous, blah, blah, blah. Granted, she does have a lot of pain and nausea, but sometimes I can’t tell what is real and what is fabricated because of teenage drama (and La Petite has never been short on the drama). At that point, I pretty much had enough. When she asked for ice to take an anti-nausea pill, our nurse offered to get it, but I jumped up and said, “No. Let me do it, because only ‘daddy’ can do those things.” (A little back-story here. There have been NUMEROUS occasions where she was to get an injection or some other thing that nurses do, but she didn’t want them to do it, but, rather, me. At first, it was endearing, but now it’s become quite cumbersome.) Another reason I went to get it is because this particular nurse, although great, isn’t exactly the fastest moving person, and I wanted to get the PT/OT show on the road, knowing that the anti-nausea med would take some time to work. On my way out, I told her that I wasn’t putting up with her drama, and that she was gonna do what they wanted her to do, with no questions asked. I could instantly tell that I had embarrassed her.

But that didn’t stop me.

When I returned to the room, I poured her tea over the ice and said, in the company of her nurse, and two PT/OT workers, “I have put my entire life on hold to see you regain your health, and yet you choose to continue to disrespect that by not doing what you should be doing.” I gave her the pills and sat down. The PT/OT girls took over, conducting their evaluation, then took her out and they did some walking (after much more balking on her part).

Later that day, she quietly and humbly told me I embarrassed her, and that I owed her an apology, and before I could speak she also said that she owed me an apology for not trying as hard as she should. We both apologized, and that was it.

Until I got the text.

When I read it, I had this thought:  I get frustrated with my child, and I'm quick to remind her that we put everything on hold for her (I’ve done it before). God did so much more than that when He sent Jesus to be beaten, spat upon, humiliated, cursed at, and ultimately, to die for us, naked on a cross, and He never throws that in our faces. He simply waits, mostly in silence, for us to come to our senses, and repent.

He is everything I’m not, and I’m nothing that He is.

1 Samuel 15:22-23 says this:

But Samuel replied:  “Does the Lord delight in burnt offerings and sacrifices as much as in obeying the Lord? To obey is better than sacrifice, and to heed is better than the fat of rams. For rebellion is like the sin of divination, and arrogance like the evil of idolatry. Because you have rejected the word of the Lord, he has rejected you as king.”

My “sacrifices” mean nothing, and my arrogance is idolatry. And when it is all said and done, I do not want to be rejected by God.

God, help me to be the dad You want me to be. Help me to see that obedience in the position I hold, no matter how horrible, tiresome, or lowly, is better than any sacrifice I could ever make, for that position is my calling for that season of life. Help me to see that my worth is not in my income, status, or anything other than what You were willing to pay. Help me to see my worth in the eyes of my daughters. Help me to see my arrogance for what it is, and help me to run from it as I run to You.

You are truly everything I am not, but You are everything I aspire to be.

Please pray for La Petite Belle and us as she is still inpatient with this pneumonia. We, along with her doctors, have some decisions to make. Please pray that we all make the right one and for continued healing for our sweet girl. A more lengthy update will be posted as soon as we have answers.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and exp

Sunday, May 7, 2017

I don't know how you do it.

"I don't know how you do it," ... That's the statement we hear a lot.

Our current life is not easy.
It's actually the hardest it's ever been.
The past couple of years have been ruthless to us.

We know HOW we do it.
It's only Jesus.
It's only God's grace that carries us.

It doesn't always feel that way though.
Sometimes it feels like we are drowning, with nothing and no one to grab onto.
But, the water always subsides. Most of the time to simply rise again another day.
It's never "over." 

We keep saying how much we'd like this to be "over." But, I've come to the conclusion that this may not ever be completely "over" for us, nor for our sweet girl.

I'm coming to grips with the fact that this may be something we have to deal with the rest of our lives. Things may get better. Things may get manageable. From time to time, things may get worse. Our job is to just handle it the best we can.
That's how we "do it."

Whatever is thrown at you, you just have to deal with it. There's no escape, no running and hiding, no letting someone else handle it for you. Nope. You have to deal with the trials of life and unforeseen circumstances.

Life is tough, people.
There's just no way around it: Trials will come.
Jesus promised it: "Here on earth you WILL have many trials and sorrows ..." (John 16:33)
And, just because you feel ready to take them head on doesn't mean you'll actually be able to do that. 

I thought I was prepared spiritually and mentally for anything.
Well, I wasn't. In my mind, I had all the knowledge of what I needed to do, needed to feel, needed to believe, and needed to pray for. But, all of that didn't stop the doubt and questions that arose and I am still pretty disappointed in how I have fallen completely apart many times.

I thought I was stronger.
Turns out, I'm not.

I've come to expect bad things to happen more than good. That, my friend, is wrong theology. It's just where I am in my life and what I've experienced lately.

With that in mind, I wasn't surprised when, on my third day of work at my new job, La Petite Belle became sick and had to go back into the hospital. At that very moment, I questioned EVERYTHING, like I always do. Maybe I shouldn't have taken the job. Maybe I shouldn't be working at all and just trust God for His provision. This is all my fault (which is a whole other thought, for another post, at another time).

As I sit here typing on Sunday morning, from the 10th floor of Texas Children's Hospital, I am practicing being thankful. 

La Petite Belle and I had a long conversation last night about focusing on what we're to be thankful for, instead of how much we want this situation over and done with, instead of focusing on how much we miss our old lives, our friends, our families. We thanked God for all the people we love and who have stood by us through this time. We talked about each of them and how much they mean to us. La Petite Belle shed plenty of tears, thinking about all the people she misses, and thinking about a couple of really good friends and families who are very dear to her heart.

La Petite Belle was admitted on Wednesday because of fever again. Results came back as pneumonia. The cause of the pneumonia isn't known, but they treat it all the same. She's on lots of antibiotics, and just finished her last dose of the mac-daddy of antibiotics on Friday for MRSA.

She's felt pretty miserable since Wednesday, but today seems to be improving somewhat. Her throat and chest were hurting her a lot. Now, it seems that her throat is on the mend, but her chest still hurts some. She's now coughing more, which is supposed to be a good thing, but it's causing her to gag and vomit. She's not eating and hasn't since Wednesday so she's back on TPN for now.

Our BMT docs are meeting with ID (Infectious Disease) and Pulmonology docs tomorrow to discuss the pneumonia and make sure everyone is on board with her treatment and that no other procedures will need to be done. Seeing as she seems to be getting better, our BMT docs think the meds she's on now are working and that nothing else will need to be added or done. We'll see what comes about tomorrow.

It has been extremely difficult and heart-wrenching to be away from La Petite Belle during the day when I'm working ... way more difficult than I even could've imagined. I know that she's in good hands with her daddy, but not knowing what's going on moment by moment is hard on a mama.

No matter how hard this is, I have to do it. 
Beau and I each have to do what we have to do right now.
La Petite Belle has to do what she has to do right now.
That's how we do this. We just do it.
That's what anyone has to do when times are tough.
You do what you have to do to make it ... no matter how hard.

We can cry about it as much as we want, but it won't change what we have to do.

I already warned one of my new co-workers that I may cry at any given point throughout the day and that she shouldn't be alarmed or worried. It's just the way it is. I'll get through it.

I don't know when we'll all get through this and it'll be over, but I do know this ...

At the end of that same verse I quoted before, I see hope.
"Here on earth you will have many trials and sorrows. BUT, take heart, because I have overcome the world." John 16:33

Jesus overcame, which means we will overcome.
And, yes ... one day it will be "over."

Thank you for continuing to pray and support us through this. You have no idea how grateful we are for you. When you are praying, please pray that this pneumonia is completely gone and La Petite Belle gains her appetite and strength back again. Pray for wisdom for the doctors to know exactly what meds to give her and not give her. And, lastly please continue to pray for complete healing in her kidneys. We know God still performs miracles. He already has.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and expenses.
We are extremely grateful for your help, support, and prayers!

Thursday, April 27, 2017

Separation Anxiety

When La Petite Belle was a baby, she suffered severely from separation anxiety.

Y'all ... it was bad.

Once she hit five months old, she was only happy with me. She didn't want anyone else. Moms who've gone through this stage can relate to how exhausting this can be. A Target run was like a vacation. Meanwhile, at home, Beau would be holding and bouncing a crying baby for three hours. (Yes, Target runs can take three hours.)

Every picture taken of La Petite Belle, from five months to over a year, were snapped just at the moment she had stopped crying. In some pictures, her eyes are watery and red. This was because she was not actually touching me, and I was only a few feet away. It was quite insane.

Leaving her in the nursery at church was a task. I just did it, hysterically crying and all. At some point, she developed a connection with the nursery director, and, although she would still cry, it became less. But, only when the nursery director was there. Church became another mini-vacation for me. I really didn't feel that bad about it. I probably should have. But, I didn't. I knew she would survive. Even if she cried the entire time I was gone, she would stop once I'd return.

The common "crying it out" plan for night-time sleeping for La Petite Belle was torture. I thought she might choke on her own tears. But, in the end, even after hours and hours of this, eventually she did stop.

And, months later, at some point ... some time after she was a year old ... something snapped and she became super independent.

Really independent.

She also began to voice her opinion and speak her mind more than most people, even her parents, may have liked. But, it was also what we loved about her. She was fearless. She was and remains the most bold person I know. Even now, when she speaks to the doctors, she's not shy about expressing her thoughts on matters.

However, during the last two years, La Petite Belle and I have been together pretty much 24/7.  She said today ... "I miss you even when I'm sleeping." This kid!! She melts my heart and I turn to rubble. Not only is she the most bold person I know, but also the sweetest person I know.

I mean ... seriously ... all she wants to do is cuddle ...

the dog ...

the daddy ...

She asks me every day for more cuddles. With La Petite Belle, the "I love you"s are not in short supply. You always know where you stand with her.

I'm sad to say I won't be able to cuddle with her as much as I have been throughout the last two years. But, happy to say that God has provided a job for me. This means Beau will be La Petite Belle's main caregiver. He'll be the one with her every day, taking her to and from appointments, making sure her meds are taken, doing school with her, and helping her in any way she needs.

This will be quite an adjustment for all of us.
I think La Petite Belle and I will have a huge case of separation anxiety for a while. It'll definitely be difficult for me being away from her during the day. It'll be difficult for Beau as he will be taking on most of the day-to-day care-giver duties.

He will continue to do freelance work and play with bands around town. While my job will provide a consistent income, my salary won't cover our living expenses. But, we will FINALLY have insurance once again, which we desperately need.

As you remember us in prayer this week, please pray for us to adjust to this new life change easily. Continue to keep La Petite Belle in your prayers ... healing in her kidneys and for her body to stop this breakdown of red blood cells (hemolysis). She needed a blood transfusion earlier this week and they have already ordered more blood for Friday because her hemoglobin wasn't as high as it should have been. It had been close to a month since she'd needed a transfusion. La Petite Belle continues to receive an infusion of Rituxin every week to try and stop this hemolysis from happening. Please pray that her body will respond to this medicine completely.

Good news is that she continues to get stronger and stronger each day. While she hasn't even started her physical therapy yet, we can see such progress in her strength. We are hoping to finally have the therapy set up by next week. She does get tired pretty easily after outings or long hospital visits. Her endurance needs to be built up and should improve over time with therapy.

Thank you for continuing to pray and stand with us as we travel this road. The road has been long and  we don't know which way it winds and turns, nor which direction it will take us. But, we will keep trusting our faithful God, knowing He is in control and always has our best in mind. No matter how hard this journey gets, He is with us and holds us steady.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and expenses.
We are extremely grateful for your help, support, and prayers!

Monday, April 17, 2017

Feels so good.

We finally made it to church. And, not just Beau and me, but La Petite Belle too. Two Sundays ago, La Petite Belle attended her first church service since December, 2015. At that point, she was over 100 days from her bone marrow transplant and was just starting to be around people again. In July of that same year was when church-attending and just generally being with large groups of people came to a halt.

You have to understand that this girl was basically born on a church pew.
She first attended church within the first couple of weeks of being born and, with having parents on staff at a church, that was only the beginning. From then on out, she was pretty much at every church service, every event, and heavily involved in the ministry. She spent just as much time at the office with us when she wasn't in school. La Petite Belle would help out the maintenance staff in the summers and I would find jobs for her to do to keep her occupied. She even had a little side job she created offering neck and shoulder massages to the secretarial staff for quarters so she could raid the snack machine. Needless to say, the church was home to her. The people were her family.

It's definitely strange and unfamiliar searching for and attending new churches. After having spent so much time being the welcoming committee, it's hard to be the visitor being welcomed. But, here we are ... strangers in our own lives.

It felt good for all of us to be in church as a family, having my husband on one side and my daughter on the other. We held hands. We worshiped. 

During the third worship song, I looked down at La Petite Belle in her wheelchair. Her head was in her hands and she was sobbing. I sat down and held her. I asked her why she was crying. Her response was, "It just feels so good to be in church again." I understand. It does feel so good. It feels like home. It's the closest thing we have to home.

La Petite Belle struggles with understanding all this. We encourage her to stop trying because we have no answers. All we can do is press on, move forward, and sometimes just get through it. All we can do is trust God, knowing that He's always got us and never left us.

La Petite Belle has a special week ahead. Although she's lost many friends because of distance and our situation, one friend has remained close. This sweet friend is staying with us this whole week and we can't be more thrilled. Although we'll be at the hospital a few times a week, they will get to spend some good quality time together. We are extremely thankful for friends who've stuck with us no matter the distance, no matter the difficulty, no matter the inconvenience.

Her friend, Avery, definitely puts a smile on her face.
Here they are dying eggs this past weekend.

Friends seem to make tough times more bearable.

As far as any updates go, there aren't a whole lot.
When you pray for La Petite Belle, please continue to pray for:
1. Hemolysis (destruction of red blood cells) to be gone.
2. Kidneys to miraculously wake up & begin to function normally. 
We will continue to believe for healing in this area despite what the doctors say.
3. Increase in appetite & nutrition to improve.
4. Increase in strength & mobility.
5. Peace of mind.

Also, please pray for God to provide jobs or opportunities for Beau and me. He has been faithful to provide for us these last couple of years through all this and we know that He will continue to take care of us.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:
All gifts are tax deductible. All funds go to cover medical bills and expenses.