Thursday, December 1, 2016

The Church

I've had a lot of thoughts about the church this year. I'm not speaking of any one specific church, but the church as a whole, the body of believers. (see disclaimer at the bottom of this post)

It's been basically almost a year now since we've attended any church regularly. We're not a part of any church actually. I've been to three total services at different churches here and there this year. 

I guess this goes to show that you don't have to actually attend church to be a Christian. But, you do have to attend church to have support and community.

My relationship with Jesus has definitely had its ups and downs this year. 
I've been angry. 
I've been sad.
I've been more than sad.
I've been lonely. 
I've felt abandoned
I've been grateful.
I've questioned.
I've pleaded.
I've praised.
I've cried a mound of tears, more tears than I've cried in my lifetime and more than I knew I ever had.

And, I always come back to these three conclusions:
1. God is good.
2. God loves us.
3. I don't have any answers.

I might even say my relationship with Jesus is stronger. Maybe "stronger" is not the right word. A better word might be "different." My relationship with Jesus is definitely different than two years ago. 

My view on the church as a whole has definitely changed.
Church attendance is now a luxury, not a necessity. Yes, Paul speaks of it when He said, "Do not neglect meeting together, as some people do,  but encourage one another, especially now as the day of His return is drawing near." (Hebrews 10:25)

And, I get that now more than ever. The purpose in meeting together is to encourage one another.

That is what I have been missing this year, not being a part of a church.

I've been doing ministry for a very long time, until this year happened. It's been a hard transition from that to where we are now, not even part of a church at all.

If the purpose of the church is to encourage, then the church is not a place, but a people. My church has been friends who have supported us as best they could through this time. It's been difficult as most of our people are located in another state, but I know they've done their best.

I also know that our life would have felt differently this year had we been in a place where our church/people were. That's definitely why we've felt so alone. The church can only do so much long distance.

We've had some local churches stop by and visit, but haven't developed any solid relationships with any particular churches. It's kinda funny because we are open and desperate for community, yet can't find it. If churches truly understood how in need people in our circumstances are, I think the church would look a lot different. Maybe it wouldn't be so focused on programs and church traditions, but on the real job of encouragement and meeting needs. That to me is what the church should look like.

If I could speak anything to the church right now, it would be to seek out people in need. That's what Jesus did. I don't recall Jesus doing anything but meeting needs and out of that was where the ministry came.

Let's face it ... church has become quite a show. Don't get me wrong, I like a good church service. I was the queen of wanting to put on a good show. But, if that's all it's about, we're totally missing the boat.

The show should be secondary to the need.

As we start to settle in to what we hope is a routine (no more hospital stays would be fantastic!), we are in talks about finally being able to find a church. We are so desperate to be a part of community, not part of a show, part of relationship and people to simply love us through this.

This city is filled with churches. It might take us another year to visit all the ones we'd like. But, this time around, I will be looking through different eyes, much older, wrinkly, baggy, swollen, worn out, sad eyes.

** I've been thinking about writing this post for so long, but hesitant because I didn't want to offend any churches at all. Let me be clear that this is not about one particular church. We are incredibly grateful for our church back home who has done everything it could do to help us all the way in another state. We are even more grateful for the friends who have stuck by us through this and not simply abandoned us because you know, "out of sight, out of mind." We are equally thankful for the visits from the few local churches that we have had. This post is about community, which we just haven't been able to have this year due to our circumstances. But, oh how we've longed for it and can't wait to finally have that again in our lives. It truly is the MOST important thing about the church.

With that all said, we are trying to transition from hospital life to home life. That's hard to do when La Petite Belle keeps having to go inpatient. We are out again and hoping it's for a very long time. That may be unrealistic, as some of the doctors have said, but I'm still going to remain hopeful and believe that it can happen.

La Petite Belle's care requires a lot out of Beau and me. Keeping her meds straight alone is a full-time job. We have to wake her at midnight and early morning for some of her meds. That's not fun. None of us ever get a full night's sleep.
This is her meds/supplies/appointment keeper control station. It takes up half of the kitchen counter.

We're exhausted, but would have it no other way. La Petite Belle is exhausted. We travel back and forth from the hospital for clinic visits, other doctors appointments, and dialysis three days a week. We arrive late morning and don't leave until evening. It takes a lot out of all of us, but mostly La Petite Belle.

Our girl remains on dialysis three days a week. We were hoping to see more improvement in her kidney function by now. But, we'll just be thankful that they're not getting any worse. She seems to be adjusting better to dialysis in the actual dialysis unit.

Her gut continues to be the biggest issue right now. With this gastroparesis, we've just added another complication to the gut-healing process. The meds they've started to try to move her gut along may be working a bit. She is still vomiting throughout the day, but the vomiting is less. The docs keep saying the same thing ... "this is going to take time." Not the words that we'd like to hear after we've been watching our baby girl suffer for close to a year now. Enough is enough.

La Petite Belle is continuing to get stronger, even walking a short distances with a walker in the apartment. This is huge! A month ago, she couldn't do that. We are in the process of getting her set up with in-home physical therapy two days a week on the days she's not at the hospital. We're also working on trying to get in-home nursing help several hours a week to give us a break, and allow us to actually get out together and not separately. One of us, if not both, are with her 24/7. We are limited on who we can actually leave her with here due to her complex care.

Thank you again for all your love and support. Thank you, most of all, for praying for our girl.
Please pray for complete gut-healing, kidney health, physical strength, and mental clarity for our amazing girl! Pray for us as we care for her and for God's guidance and provision during this journey.
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.

Saturday, November 19, 2016

Grateful

K Belle was in pre-K and getting all prepared for her Thanksgiving feast. There was a program that preceded this feast where the children, as par for the course, dress up like Pilgrims and Indians (Can you say "Indians" anymore? I'm not real sure. Seems strange to say "Pilgrims and Native Americans". I like "Indians". I'm going to say "Indians." I mean ... I am about 1/24th Choctaw Indian, so I think I can, but still kinda unsure. Gonna say it anyway.) and sing some sort of Thanksgivingey songs, recite poems, and just generally be cute.

And, as par for the course again, my child decided that, despite how adorable she was in her Pilgrim hat, she didn't want to wear the hat. She pitched a fit about wearing the hat. I told her she HAD to wear the hat just like everyone else. I told her that the hat was cute. It really was. I told her to basically suck it up, get out there in that hat, and stinkin' sing her song and be cute. Enough already.

Beau and I sat amongst all the parents "oohing" and "ahing" over their precious little ones, while K Belle stood smack dab in the middle of the group and cried. I mean, huge crocodile-tears cried, all because of that cute, white paper hat.

Today, this girl has no problem performing in front of audiences and she definitely has her own sense of style. In fact, today she'd probably be the one who wore the white Pilgrim hat when no one else did.

If this event would have happened after the life circumstances we have experienced and continue to live out, I probably would've let K Belle go hatless.

My perspective on life has changed.
I don't care about a lot of stuff I used to care about.
There are a lot of things in life that we waste brain power on that just don't matter in the grand scheme of things.

I'm finding out what it means to be truly grateful.

I think my gratefulness was always associated with events, like the upcoming Thanksgiving holiday or  things that were happening in my life.
But, gratefulness is a way of living.

Living a grateful life is nurturing a heart of constant gratitude, not only in good times, but in bad.
That's not an easy thing to do in hard times. But, that's when you find out what you're truly made of.
When you have a grateful heart, you can remain grateful even when you are lacking, when your need hasn't been met, when you have no answers. 

Take time throughout your day to notice all you have and all you had in this life. Be grateful for it.
Be grateful for the breath you get to breathe when you wake in the morning.
Be grateful for the simple things, like packing school lunches, grocery shopping for your family, holding the hands of your little ones and your husband, and sharing a home with the ones you love.
I wasn't grateful enough.
What I would give today to be picking up dirty clothes off the floor and solving an argument between sisters.
I wasn't grateful enough.

In the midst of this trying time, I have to purposefully make my heart grateful.
I intentionally look for things throughout my day for which to be grateful.
I thank God for the blessings He's granted us through this journey and I also thank Him for the restoration that He promises to bring.
I thank God for so many precious, tender moments I've gotten to experience with my child that has truly shown me her heart.
I thank God for the dreams He's allowing my oldest daughter to live out.
I thank God for such an amazing, selfless husband whom I can lean on day-in and day-out.
I thank God for the provision He's granted us and for the provision that is still to come.
I thank God that knowing Him allows me to always be able to say, "everything will be ok."


Unfortunately, we are back inpatient after only getting to be home for four days.
We had to take La Petite Belle into the emergency room last Tuesday afternoon due to multiple fainting spells. They became more and more frequent, accompanied with more and more vomiting. After 24 hours in the ER, two days in PICU, one day in PCU, we finally ended up back on the BMT floor Friday night. Many tests were run on our girl's heart and brain. Turns out her "fainting" spells are a response to pain in her gut. La Petite Belle does not actually become unconscious, even though she looks that way. Her vitals stay stable, but she is limp, lifeless, and eyes rolled back. What she is doing is something called "vagaling." It was described to us as her body's way of "bearing down" as she's about to experience some type of pain. The vagus nerve itself is actually directly responsible for digestion, moving food along through your stomach. Everything is starting to make sense now as today we got results of another test that was done called a "gastric emptying" test, which shows if her stomach is actually emptying the contents that are put in. The results came back and she has delayed gastric emptying or Gastroparesis. This is why just recently she has been vomiting more and is never hungry. She hasn't been eating anything at all, actually. A new medicine will be started today which promotes stomach emptying and gut motility. We are praying that this will solve yet another stomach issue, which, in turn, will solve the "passing out."

In being home just four days, we did notice her getting up more and getting stronger.

Pray with us that this new medicine does the trick and we can go back "home" to the apartment. Please continue to pray for her kidneys to return to fully functioning and her to get stronger each day.
An even more detailed prayer list is in the previous post.
I am grateful for all your prayers, for lifting up our family daily. We love you all.
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.

Saturday, November 12, 2016

I can't.

As I sit here typing this, La Petite Belle is asleep on the couch and her daddy is trying to catnap as well. Beau and I are exhausted, physically and emotionally.

And, I just can't.
There are so many times throughout the day, I say, "I can't do this."
I know I have to. But, honestly, there are times I can't do this.
I take a moment ... I have a good cry ... I get up ... and I keep doing this.

I'm not the only one who can't.
Beau can't.
La Petite Belle can't.
They've each said the same things themselves.
They do the same thing I do ... take a moment, cry, get back up, and start doing this again.

We are happy, in the sense that La Petite Belle isn't in a hospital room anymore. She's "home," ... our Texas home, for now. Will it be forever? We don't know, but it is for now.

We are grateful that she was stable enough to come home, but I don't think people really understand what our life looks like at the moment.

Let's start with her exit from Texas Children's Hospital and go from there.
Here's her exit parade.
video

La Petite Belle spent 10 months and 6 days inpatient, rotating from the Bone Marrow Transplant Unit and the Pediatric Intensive Care Unit. The gratitude we feel toward all our doctors, nurses, and staff who helped her down this road is immeasurable. We consider many of those who cared for us as our family here.

She looks a lot different. The last time I posted a video of her from TCH, most people said they didn't recognize her. Yes, it is her. But, she not only looks different, she is different from before. Beau and I are too. We will never be the same again and neither will our lives.

As people continue congratulating us through social media and messages, I can't help but sit here and cry. They honestly have no idea where we've come from and can't imagine the road ahead and the care we must provide for her.

There have been many tears in the last 24 hours. We miss our family. We miss our old lives. We miss home. And, we feel more alone than we ever have now that we're out of TCH. I know that sounds crazy. Don't get me wrong. We don't want to go back. We are hoping for the best, but "real life" has set in since we've been out. Beau and I see how much La Petite Belle is going to need us day after day. We also are burdened with how we are going to be able to handle this by ourselves, physically, emotionally, and financially. We just don't know. We don't know at all.

Right now, she needs both of us because of how weak she is. The hope is that one day, she'll only need one of us, and eventually be strong enough to get on with her own life.

Here's how things look right now.
La Petite Belle is still not able to stand on her own. She is doing well with transferring from her wheelchair to wherever she needs to go. That in itself does take a toll on us and our backs. She needs help with every task ... going to the toilet, showering, dressing, standing at the sink. Basically anything you can think of that requires standing, she needs our help with. She would LOVE to not need our help and desperately wants to be independent, but she has a tough road ahead of her as far as building up all that strength. I will say that since we've been home ... only since last night, she's gotten up many more times than when we were in the hospital. We are continuing to work on getting in-home physical and occupational therapy. There seems to be insurance issues, of course. So, that's holding us up and Beau and I are going to have to try to work as her therapists until this can get settled.

The hardest thing for her right now is her stomach issues. She wakes up gagging/vomiting and it continues throughout the day. Although she's on EVERY anti-nausea med there is, nothing really seems to work to control this. Because of all this nausea, she doesn't eat. She wants to eat, but has no appetite. We had big plans this morning for Beau to cook his famous Saturday morning pancakes, which we hadn't had since last year. She was looking forward to trying to eat, even though her stomach was hurting. She took a bite or two and threw it up minutes later. We all sat at the table and cried. I can't imagine there's something worse than watching your child suffer. As parents, we are trying to stay positive, but some days, I see that we are both still so broken.

Because she isn't eating, she is on 18-hour TPN that we have to hook her up to ourselves. She will remain on this until she can eat. Beau and I also hook up an anti-fungal med each day, flush her lines, give her insulin injections each morning, check her blood sugar every 6 hours, give her more insulin if she needs, make sure she's taking all her pills throughout the day (there's a lot of them), clean up lots of spit and vomit, put her on a pulse and oxygen sensor each night to check her heart rate and oxygen, and force her to wear a CPAP now as the doctor ordered. Add all this to the physical labor of caring for her and you've got yourself a full-time job with no breaks or vacations.

Now, for her kidneys ... I had a major breakdown last week as we met with yet another medical team we have to deal with now ... renal. I had prepared myself for what they were going to say, but as the words came out of their mouths, I couldn't hold back my tears. La Petite must be declared "End Stage Renal Disease" in order for her to be treated in the outpatient dialysis unit. This is the requirement by law. I hate that. This doesn't mean we lose hope that her kidneys will recover. We do still hope and the doctors would like nothing more than to have to come back and sign another paper that says she no longer needs dialysis, nor has any sort of kidney issue. That's what we are hoping for. Her kidneys bounced back before a few months ago, and we're hoping for the same thing. Until then, La Petite Belle must have dialysis three times a week for four hours. We will be doing this, along with a BMT check-up appointment every Monday, Wednesday, and Friday.

Her skin is another issue we deal with. While it is much better than it was when she was on steroids, she's left with lots of sensitivity, compromised skin, and scars. As she begins to eat and her nutrition improves, this will help her skin heal. In addition, she's lost some of her hair also due to poor nutrition.

Y'all ... this girl needs to be able to eat. That's the bottom line. She coughed up the feeding tube that was placed a couple of weeks ago and was just not able to tolerate it for some reason. So, she has to eat. What's hard to understand is how La Petite Belle can get all her pills down, but not food. And, that she has no appetite at all. I just have to make her eat bites of stuff just to get something in her stomach. We know she has severe gastritis because of all that transpired this year, but she still should be able to eat some.

Lastly, Beau and I really are at a loss as far as what to do for an income. Beau does still have his part-time job, so that's helpful. However, our insurance has gone up and we are facing new deductibles and new costs with dialysis three times a week. We are looking into other insurance options and are finding that we will still be out-of-pocket quite a bit. We are also looking into some work-at-home businesses, but don't know if we would be able to really get them going in order to have a good income within the next few months. So, there you go ... at a loss here.

With all this added stress, we are finding ourselves in a pretty dark place at times.

We know God has sustained us through what we've already been through and we know He won't forsake us. But, I'd be lying to you if I didn't say that this is a hard place to be. 

I still cry out to God the same prayer I've prayed when we got La Petite Belle's initial diagnosis ... "Jesus, help. Please, help."

My heart was broken as La Petite Belle shared with me, through her own tears, that she still can't believe this happened to her. She just KNEW she was the "chosen one" whom God was going to instantly heal. She so honestly trusted and believed that God was going to instantly heal her back in April of 2015. This girl always had a huge amount of faith.

Our sweet girl has been dealing with a lot of anxiety, fear, and depression. We have prayed with her. We have talked to her. We have read Scripture about fear and anxiety. She, herself, has declarations that she says to start her days. We, as parents, have done all we know how to do, and have gotten the psychologist involved. You can't imagine how hard this has been for her. She has been through hell and has the scars to prove it. As other teenage girls go about their simple lives, our girl continues to fight. Most of her friends have forgotten about her. She rarely gets on social media because she's expressed how depressed it makes her feel. She's tired, but she fights nonetheless.

We are beyond honored to be her parents.

Please pray for us. 
Specifically, pray for these things that I have mentioned above:
1. Complete kidney recovery
2. Complete gut recovery
3. Nausea/vomiting to cease
4. Appetite to return
5. Ability to eat
6. Strength to muscles and bones
7. Strength for mom and dad
8. Skin to heal/hair growth
9.Anxiety/fear/depression to be under control
10. Finances - jobs, insurance, care costs
11. Wisdom/guidance for mom and dad

Thanks to all of you who have been following our journey and continue to pray for and with us.
We are forever grateful.

As Beau has been quoting to La Petite Belle:
"You didn't come this far to only come this far."


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.


Thursday, October 27, 2016

The Future

It's hard to not think about the future.

What will the future look like for La Petite Belle?
What will the future look like for our whole family?
Will we be able to get jobs soon?
What will we do for jobs?
Will I be able to get another job at all?
Will we have to live in Houston indefinitely?
Will we ever be able to move back to Louisiana?
Will La Petite Belle be able to return to school at some point?

And, the questions could go on forever.

I've been pretty good at NOT being concerned with our future because I have been so wrapped up in La Petite Belle's care. I tend to only be able to focus on one thing at a time. That's my thing right now. It literally consumes most of my thoughts and my days.

Beau, on the other hand, thinks hard about our future and what that may look like. That's a man thing. They are naturally providers and protectors. Not knowing how they will be able to provide and protect can cause a lot of worry.

We are thankful that Beau has been able to keep a part-time job and has been picking up a good amount of gigs around town. But, as time continues to just roll on by, our apartment lease gets shorter and shorter. We look ahead to what's next.

Not only are we anxious to get our girl outta here before Thanksgiving, but the the doctors are too. Next week will mark 10 months here at TCH. That's long. Very long. Extremely long.
Not only do Beau and I want to go "home," but La Petite Belle says often, "I wanna go home."

Since we've been here that long, we've come to know multiple families. Unfortunately, most of the families we have developed relationships with have lost their children. Our hearts continue to break as we watch these families walk through the hardest thing I think anyone could face.

One particular family we've come to love here just lost their daughter.
From the time we were admitted earlier this year, La Petite Belle became friends with Paige, whom she actually never got to meet. They were both too sick each time Paige was inpatient. The goal was to get them together after all this was over. They communicated only through social media and us moms.

Paige painted this for La Petite Belle earlier this year.

It was her favorite quote. And, she definitely lived up to this until the very end of her life.

We've had to tell La Petite Belle multiple times this year that certain kids have died, but this one hit her the hardest. She cried. We cried.

But, her words after finding out spoke volumes about sweet Paige:
"I never even met her, but I loved her."
What a testament to who Paige was.
La Petite Belle also said that Paige's story gave her hope. So, you can imagine how discouraged she's been lately.

I had to explain to her that everyone's story is different.
And, not just the story itself, but the ending.
That's true for all of us.
Although some of our stories are similar, they're never the same.

I haven't been posting much lately. As I've said before, my energy is all wrapped up in La Petite Belle. There are days I don't even open my computer. There are also days where I don't have the brain power to even muster up words to write. Some days I feel discouraged and very much worn down. Some days I'm fine.

I have good intentions. I try to distract my mind. I try to read books that may even help me through this, but they don't hold my attention.
I pray. Actually, I pray a lot.
All day. Every day.

A lot of the time, my prayer is, "God, I don't know what to pray anymore."

That's where I am right now.
There is nothing else I can do than what I'm already doing.
So, I just keep doing it. I am weary for sure.
But, I just keep pushing forward ... hoping, waiting, praying, trusting, expecting.

La Petite Belle is doing better. She has a long way to go as far as her rehab is concerned. That's going to take some time. She is standing with help, but not strong enough to stand on her own yet.

Her kidneys aren't where they need to be to not need dialysis. From a fluid standpoint, she seems okay. She is producing urine, but that urine is not clearing the waste from her body like it should. She is doing dialysis three days a week.

La Petite Belle is having increased nausea just this last week. She was eating somewhat and able to go down to 12-hour TPN. Now, she's not eating at all and having a very hard time keeping all her pills down despite all the anti-nausea meds she's on. The doctors are trying to switch everything to pills so that she can be discharged.

Yes ... you read that right ... I said, "discharge."

The doctors and medical teams are trying to get La Petite Belle ready for discharge within the next few weeks. Granted, we will have to come back to the hospital at least three days a week for dialysis and BMT clinic visits. It could be four days for an additional lab draw and physical therapy visits. She is still very weak and will require our help with her care at home. She can't do much independently.

In order for her to be discharged, a few things have to happen in the next couple of weeks. First off, La Petite Belle is going for a sleep study tonight. Since she's been her so long, and become so weak, along with prolonged steroid use, she's developed sleep apnea. They will study her sleep tonight to determine what she will need as far as oxygen at night while she's sleeping.

Secondly, because she's not eating, and in order to start to get her gut working again and all her pills down, they will be inserting an NJ tube, probably tomorrow. This tube is tiny and will go through her nose to just past her stomach. We will be able to give her meds and feed her through the tube. She will also be able to eat with this tube in. It's not forever, but just until her gut heals and she is able to eat enough.

Next, she will need a new dialysis catheter put in that is required for outpatient dialysis. This will be a surgical procedure where it is put into her chest. La Petite Belle will also need to have three consecutive dialysis treatments in the dialysis unit. That whole process in itself will take a week in itself.

Lastly, physical therapy rehab will be extremely important. The team here is working on coordinating  how that will work as outpatient. Beau and I will have to work together to help her to do even the simplest tasks that we take for granted. She has a lot of anxiety and fear related to falling. We are working through that with her.

Although, La Petite Belle is better. The road ahead still seems long.
Please pray for us as we continue this journey with our sweet girl.
Specifically pray for her kidneys to be COMPLETELY healed, her gut to work like God designed it to work, and for strength ... lots of strength.

Thank you for your continuing to pray, stand, and believe with us for our girl's 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.


Monday, October 10, 2016

It's my party. I can cry if I want to.

This past week has been an emotional one, but most of the emotions came out of a full heart.

Thursday was La Petite Belle's 16th birthday.
She spent the majority of the day before crying. I tried to comfort her, but ended up crying myself.
No one should have to spend their 16th birthday in the hospital.
She was overwhelmed with emotion and her situation.
She vocalized to her father and me that she never imagined that her sweet 16th birthday would look like this. She envisioned that she'd be dressed in a beautiful dress, hair done up, makeup on, surrounded by her friends, dancing at a Cinderella-like ball.

That's not what her day looked like.

She didn't wear a beautiful dress, nor makeup. Her hair wasn't done up either.
But, I dare say she was the most beautiful I have ever seen her.

Let me give you a little more insight into who our La Petite Belle is ... she is the most generous person I know. Her heart is big. Her love for people is humongous.

For her birthday, she wrote individual invitations to her nurses to come by her room (yes, she's was able to sit up in the bed and use a pen to write ... progress!). In the invitations, she stated, "no presents." When I asked her why she wrote that, she said it was because they already do so much for her. She just wanted to bless them.
She wanted to give everyone cupcakes, and achieved her goal of getting in the wheelchair to roll around the unit to hand out goodie bags to all the staff. Other nurses even came up from PICU to see her and wish her a happy birthday.

Little did she know, that we were jumping through hoops behind the scenes to allow her to see Roxy Belle. She's only been able to see her once since admission date, January 5th. Dogs are not allowed on the BMT unit obviously because of the patients' low immune system. However, La Petite Belle is not like the typical BMT patient and over a year post-transplant. A visit was organized using PAWS (Pets Are Wonderful Support). We encouraged La Petite Belle to get back into the wheelchair a second time, despite her exhaustion from her exciting day, and surprised her in a room outside the unit. It was emotional and amazing.



That was on Thursday, her actual birthday. She spent a lot of time in the wheelchair and visited with lots of people. It was a good day.

But, that wasn't the end of it.

We continued our charade for the next two days.
Two of her absolute favorite people from our home town came and spent the night with her. More tears came when they showed up Friday evening out of the blue. Beau and I were able to get out together.

The best surprise was to come on Saturday, the following day. We invited friends and family from home, plus new Texas friends to celebrate our girl with a surprise party.

Yep ... more tears.
video

Our sweet girl was so blessed by the love expressed by so many.



We are beyond proud of this 16-year-old beauty and consider it a privilege to be her parents.

As far as an update goes on La Petite Belle ... as you can see, she has made some major strides just within the last week. We see her getting stronger every day. She works hard, despite how painful it is. Of course, she still has a way to go before they will release her based on her strength. La Petite Belle is also continuing on dialysis four days a week. We're praying and believing each day that these kidneys will recover and get stronger as her body gets stronger. La Petite Belle is beginning to try to eat again. She eats small bits at a time, but her stomach issues definitely seem better. Lastly, please pray with us that this blood clot is completely gone so that she can get off this Heparin drip. The doctors are planning a repeat CT to check to see if it's gone within the next couple of weeks.

The road ahead isn't clear and it's been such a long journey. We are already looking to next year and what that may hold for us ... jobs, another place to live, La Petite Belle's medical care/hospital visits & schooling, new deductible, and even needing new health insurance (if you can believe that ... yes, we're going to have to find new health insurance). 
We don't know what each day holds, but at least we know who holds each day. And, He loves us.
Thanks for lifting us up and supporting us through this. We appreciate each and every one of you.

Thank you for your continuing to pray, stand, and believe with us for our girl's 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.

Friday, September 30, 2016

Stop Saying " ... if it's God's will ..."

I can understand how someone who doesn't know God can say such a thing. But, for the life of me, I can't understand why those who know God and have been devout Christ-followers for many years can utter these words.

I received, yet another text recently, from a well-meaning person with these words in it regarding my daughter's healing ... "if it's God's will."

Duh. Of course it's God's will to heal. God's will is ALWAYS healing.

If you know God, then you know His will.
If you don't know God, then everything is nilly-willy, up-in-the-air "theology."

When you say, "if it's God's will," you don't believe in the power of prayer. In fact, you don't believe God listens at all, much less intervenes in our lives.

Saying, "if it's God's will," means everything we're taught about prayer doesn't matter. 
It's like saying, "Well, you can pray as much as you want, but God's going to do whatever He wants to do regardless."
So, then why pray? What a waste of time that would be.

The Bible always points us towards bringing our requests, prayers, and petitions to God (Matt. 7:7; James 4:2). In fact, the Bible says to pray about EVERYTHING (Phil. 4:6-7).
Why would He ask us to do that if He were going to simply disregard them?
What kind of god would ask us to pray, to ask, all the while knowing He wouldn't listen?
That's not the God I know.

The God I know doesn't just hear, but listens.
The God I know sees, and is moved by our honest pleas.

God's will is ALWAYS for life and never for death.
God's plans are ALWAYS for good and never for evil.
That's His will, so we never have to say, "... if it's God's will," as if we're giving Him an out in case things don't work out the way we think is right and good.
He doesn't need our help, nor an out.
We just have to understand that His ways are ALWAYS higher than ours.

Trust me, I've spent the last year and a half trying to understand His will and make sense of the details of our lives. God and I have had some real honest conversations, some real hard conversations. I've learned to not even waste my energy or brain space on trying to understand or answer the question, "why."

Jesus taught us to pray. In His prayer, He said, "Thy will be done on earth as it is in heaven." He could pray this with confidence, knowing who the Father is and that His will is perfect.

As Christians, we need to just take that phrase out of our speech. We need to commit ourselves to prayer, knowing full well He is working on our behalf.


Ok, I'm off that soapbox.

September is now ending and we move onto a new month, a new season, and yet we are still fighting alongside our sweet La Petite Belle. Still in the hospital. Tired beyond belief. Relying on God's strength to sustain us and get us through to the other side of this.

La Petite Belle has been suffering from pancreatitis, but it seems to be resolving as I write this today. Her vomiting/nausea/pain isn't as intense as it has been. She continues to try to push through the pain and work on regaining her strength with physical therapy. We are also trying to keep her consistent with this, regardless of how she feels when it is therapy time. La Petite Belle remains on a Heparin drip to get this blood clot dissolved. The GI doctors will also be conducting a motility test this coming week to check out her digestion. She hasn't eaten in over a month and shows no signs of hunger, which is not her norm. Her doctor seems to think she has some type of abnormality regarding her motility. The most disheartening thing to us now is that her kidneys seem to be sleeping yet again, and she's back on dialysis four days a week. The kidney doctor said she was "worried" they wouldn't recover. We are trying to remain hopeful that her kidney function will return a second time.

Your prayers are so appreciated. Please pray that her kidneys will, once again, make a complete recovery and prove the kidney doctors wrong. Also, pray for continued healing of her stomach and GI tract, and for this pancreatitis to be completely gone. Pray for strength for her muscles and bones and this blood clot to disappear.

Thank you for your continuing to pray, stand, and believe with us for our girl's 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.

Monday, September 26, 2016

More About Hope

I've learned a lot about hope over the last year.

Hope is not a wish.
It's not a desperate desire for something to happen.
It's not even a dream for the future.

Hope is so much more than wishes, dreams, desires, and lofty goals if your hope is in the right thing.
If your hope is in something constant, reliable, and good, then hope becomes an assurance.
That's what hope in God is. It's an assurance. Hope in anything else is just fairytale wishing.

Remember this old hymn:
Our hope is built on nothing less than Jesus' blood and righteousness;
I dare not trust the sweetest frame, but wholly lean on Jesus' name.
On Christ the solid rock I stand, all other ground is sinking sand.
All other ground is sinking sand.

But, wait ... verse two is even better ...
When darkness veils His lovely face, I rest on His unchanging grace;
In every high and stormy gale, My anchor holds within the veil.
On Christ the solid rock I stand, all other ground is sinking sand.
All other ground is sinking sand.

That second verse is my true life story right now.

I recently read a perfect visual of what hope in my unchanging God looks like. Holly Wagner (Find Your Brave) compared hope to floaties ... the floats you wore on your arms as a child to help you stay above water.  As a child, I trusted those floaties with my life. As a mother, I trusted those floaties with my children's lives. When those floaties were on your arms, you weren't going down. Not at all. They kept your head above water and they kept you from drowning.
I trusted those floaties. I would not sink.

Hope in God looks like that floatie. 
I trust it. I put all my confidence in it.
I know that He will not allow me to drown.
He will keep my head above water.
I can swim here and there ... shallow water, deep water, roaring water. Whatever the water is like, He will keep me afloat.

That's not to say I won't get wet or water up my nose or in my mouth; better yet, I might have to dodge a shark or two, and probably a multitude of jellyfish. There will be many, many times I have to remember to take breaths and remind myself I'm not going under.

Most importantly, I have to not allow my floaties, my hope, to get punctured, causing the air to release. Because if that happens, I will drown.

And, if I'm being honest, that's sometimes the hardest part ... keeping my floaties full of air.

Keeping your floaties full of air is something only you can do.
Keeping your heart full of hope is your responsibility.
You have to be the one who fills yourself up with all the hope that is found in God alone.
You have to read God's Word every day. 
You have to remind yourself daily of who God is and who you are as His child.
When you don't do these things, anyone can poke a hole in that hope floatie of yours. Or you can just allow the air to seep out by not carefully guarding that precious hope.

This Scripture is in the "Notes" section of my phone. I read it constantly.
I will never forget this awful time, as I grieve over my loss.  Yet I still dare to hope when I remember this:  The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. I say to myself, “The Lord is my inheritance; therefore, I will hope in him!” The Lord is good to those who depend on him to those who search for him. So it is good to wait quietly for salvation from the Lord. (Lamentations 3:20-26)


I'm learning and living this lesson of keeping hope alive.
I have been stuck in moments of despair and hopelessness. And, I know that happened when I allowed myself to start sinking and forgot that I had floaties on the whole time.
I'm far from perfect and have had some real talk with God this year.
I can't say that I won't have more moments of sinking and splashing frantically about in the water. Honestly, I can guarantee that these moments will come.
But, when they do, I won't drown because I know my hope is in the One who will NEVER allow that to happen.


Hope in Jesus is not a wish. It's an expectation.
It's a "I know that I know, that I know, that I know He won't fail me" mindset.
It's where "everything will be okay" comes from.
It's a promise that can't be broken.

Our hope is firmly in our incredible, loving, powerful, just, merciful, unchangeable, grace-giving, healer, and ever-present Father God.


With that said, we continue to be hopeful that our sweet La Petite Belle will continue to recover. 

UPDATE: We have moved back up to the 8th floor so that's definitely a step forward again. The fungal infection has cleared. 🙌It looks like her kidneys are going to need time again to recover so she is on intermittent dialysis 3-4 days a week for 4 hours at a time. She's pretty miserable during this time. We are praying & believing for her kidneys to recover swiftly & heal. La Petite Belle is also on a Heparin drip to treat this blood clot in the vein where her dialysis catheter is. We are praying for that to also clear soon. La Petite Belle does continue to vomit & continues to try to eat a bit here & there, but with not much success. The doctors think it's related to her stomach needing to re-learn how to work again. We are praying for her stomach & GI tract to completely heal & work the way God designed it to work. And, lastly, she has lost more strength from being in the bed again for so long. We are praying she regains her strength & can stand so that she can get out of this hospital & begin to live her life again.

Thank you for your prayers and standing with us for complete healing for our precious girl.
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.