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.

Monday, January 9, 2017

I don't have many answers, but I do know some things.

I finally got a chance to go to church Sunday evening.

I have only been to church a handful of times this year. It's just not doable in our current situation. It was Beau's night to stay at the hospital and my Houston friend, Amy, was leading worship. Of course, I had to go. I was glad I got to hear her beautiful voice.

Church is uncomfortable to me right now.

Don't mistake me saying that by thinking it has to do with my relationship with God. It doesn't.

It's uncomfortable to me because of me.

Two things ...
From the time the first chord is played or the first lyric sang, I fear I might crumble to the ground ... sobbing, snotting, moaning, barely breathing in a puddle of tears. I am and have always been a worshiper. I have lead many people in worship. It's something deep inside me. It's always been there. But, right now, I think worship may have to happen alone. I think it'd be way too overwhelming and distracting for those around me. So, I'm gonna have to keep that between God and me.

The other thing is I am not good at putting on a happy face. It's hard fro me to pretend everything's okay. And, I don't have the energy to tell people what's gone on and still going on. It's too much. Too much for me to tell and too much pressure for someone to know what to say or do. It's awkward and uncomfortable.

I long for church though.
I long, as I've said before, for community and relationships.
I know that it will all come some day when things are better. Hard to believe that things have to get better for church, community, and relationships, but it's just the way it is.
Thank God for my Houston Amy, her hubby, and the few who have reached out to us. It's hard for people. I get it.

It's easy to go to church and be a part of community when things are good. Much harder when they are not. Although, that's the time we need it the most.

I sat in this service, but didn't really engage. I didn't know a single song. I felt disconnected. It was a service not meant for me anyway, a younger crowd {we all know that's not me}. 
I disengaged after I heard the pastor say this: "God is moved by our faith, not by our need."

At first, it made sense. But, about two seconds later, it didn't.
I'm not convinced of this statement. In fact, I don't even think I agree with it AT ALL.

Of course, God is moved by our faith. 
But, if God is a good Father, kind-hearted, loving, and compassionate, how can He NOT be moved by the needs of His children?
Of course, He is. Just as an earthly father would give his child what he or she needed. If his child were sick, he would do everything in his power to help that child. I don't think any earthly father would not be moved by his child's needs, no matter what they may be. And, I have to believe it's the same with our Heavenly Father. He is moved by our needs. He desires to meet them.

I get it that He is moved by our faith ... that we believe and trust Him.
But, God just has to look down from heaven on my sweet girl, struggling, fighting, hurting and be moved. He just has to.

Jesus was moved by the needs of the people when He walked the earth. He had compassion on them. He healed them. He fed them. Even when there were those who did not believe, He was moved by their needs and met them. Not every single one of them. But, some. Why did He meet some needs and not all? 

I could get into all the questions of why some believers get healed here on earth and some don't ... why some believers prosper and others spend their whole life struggling ... why some believers just have a really hard life while others seem to have it made. But, I won't. Obviously, because I don't know. No one does. I'm learning to just accept that there are no answers to some questions. That's where faith comes in.

I must continue to trust in God, that His ways are higher than mine, that He loves my family, that He sees us, and that ... yes ... He is moved by our needs.


We ask that you lift our La Petite Belle up in prayer.
Tomorrow morning, she will be having her 7th upper GI scope done. You can imagine how nervous we are about this, seeing as we came close to losing her during the last scope she had in August. She's in a much better condition physically than she was back then, but, nonetheless, it's something we and the doctors don't take lightly.
All the tests that have been done on La Petite Belle's GI tract can only tell the doctors so much. Doing the scope is the best way to see what's really happening.

She has been put on new medications and her vomiting has decreased somewhat, but she still feels pretty bad most of the day. She's been sleeping a lot too due to the anti-nausea meds.

Another bit of info we got last week was that, after being negative for a while, she tested positive for HSV (typical cold sore virus). In an immune-compromised person, this can create all kinds of problems. She has it in her mouth now and think that it could be the cause of her throat and mouth pain. The doctors also suggested it could be in her esophagus and gut, which could be the cause of some of this. She was started on an anti-viral (which isn't great for the kidneys, but has to be used) to combat HSV.

La Petite Belle is still dealing with this hemolysis (breakdown of red blood cells), needing red blood transfusions more than before. The doctors are starting another round of the immune suppressant that was given during the last month. Hoping this will continue to slow this hemolysis down and it will eventually not be a problem for her.

Please pray with us that this scope will finally give the doctors the answers so desperately needed, and for the appropriate treatment to heal her gut once and for all. Also, pray that this virus would go and the hemolysis would stop. Please continue to pray for her kidneys and that she would be able to keep her strength up, even though we've been on this extended hospital stay.

Thank you for praying, standing, believing, and supporting us through this long journey. We are weary, but we know you won't stop praying. We appreciate every single prayer.
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 1, 2017

Leave your complaining in 2016.

I really don't want this post to come off as insensitive. I know it probably will anyway, but it must be said.
I know that people have problems.
Some have big problems. Some have small problems.
So, don't think I think we are the ONLY ones in the world going through hard stuff.
I don't think that AT ALL.

But, over the past year, I've become more sensitive to people complaining about things in their lives that I only wish I could complain about.
Heck ... we've had people even reach out to us saying stuff like this ... allow me to paraphrase a quote ... "You guys are so inspirational. When I find myself complaining or feeling sorry for myself, I just think of you and realize it could be so much worse."
I understand the sentiment behind this, but understand me here, that doesn't make us feel better.
I mean ... I guess that's a positive thing. The statement though invokes eye-rolling. I'm not sure why. It might be that to me it sounds more like, "Hey ... your life really sucks right now. Thank God mine doesn't suck as bad." I know that's not the sentiment behind it and I'm being overly sensitive, but just how it feels.

We NEVER wanted or asked to be an inspiration.
I would love to NOT be an inspiration if this is the way inspiring others occurs.
I have begged God to let us not be an inspiration.
I have begged God to PLEASE give us a simple, quiet life of nothingness.

Back to my point ... here it is:
Stop complaining about stupid stuff.

It's annoying to us who are really going through real-life issues.
Know that people going through real-life issues wish they had your problems.

So, your hair cut didn't work out the way you planned it?
So what. It'll grow back.

So, you burned dinner?
Big deal. Eat a sandwich.

So, your kids are driving you crazy?
Be thankful your kids are healthy and CAN drive you crazy.

So, traffic's bad?
Be thankful you have a car and can drive wherever you want because you're not stuck in a hospital 24/7.

So, you hate your job?
Be thankful you have a job.

So, you didn't sleep well?
Just don't even get me started on that one.

There are a million complaints out there that, in the grand scheme of life, are totally unimportant.
Instead of complaining, be grateful.
Thank God for the mundane. What we wouldn't give for that!
Thank God you have all your chickadees under one roof at night, safe, sound, and healthy.
Thank God that you and your husband actually get to sleep in the same bed every night.
Thank God that you can go in your kitchen and whip up a meal.
Thank God that you can go outside and feel the sun and wind on your face.
Just thank God for your life.

I realize this does sound insensitive.
People like to complain. I complained WAY more before such adversity hit our family.

I find myself, even in our circumstances, thanking God daily for each moment.
We have come in contact with multiple families who have faced tougher circumstances than we have and some who are still fighting longer than we have been. When I hear their stories, I thank God because, honestly people, life can always be worse. I find myself in the same position as those people who say we inspire them, being inspired by those who are facing worse odds.

As I face this new year, I want to be more grateful.
Most of all, I want healing for my baby girl's body. I have solidly prayed for this. I have claimed it. I have rebuked sickness. I have spoken everything I know to speak and done everything I know to do. Ultimately, my daughter is in God's hands. He's her daughter first and I have to remind myself of that when I get anxious about what's going on. My hands are tied. It's all up to Him.

Knowing His character, I just have to trust in His will and His ways. Although I don't understand a lot of what I see here and my heart breaks for our family and for other families, I simply have to surrender.

Surrender looks different these days. It looks like screaming. It looks like anger at times. It looks like questioning His ways. It looks like loads and loads of tears. But, in the end, it looks like open hands, and an open heart that says, "I don't understand this. It seems wrong. But, I'm trusting in Your leading and Your plan."

Please be more grateful this year. Complain less. Thank God more, even in the messy stuff.
Life can turn on a dime. Treasure each and every second. Love harder than you ever have.

Goodbye, 2016. You've been hell for us, for sure. But, thank you for allowing me to see what a wonderful family I've been blessed with and what a wonderful God I serve through it all.


May 2017 be better for all of us!

As far as an update on La Petite Belle's progress, I don't have a whole lot to say. Her liver levels have stabilized and it seems her hemoglobin is not dropping as drastically and quickly as it was a week or two ago. She was finally seen by a GI specialist on Friday, who spent a significant amount of time learning about her case. She is a complicated case. I am hopeful in that he seems eager to help us figure this gut thing out, and doesn't just say, "well, you know her gut just doesn't work well right now." He wants to start with the least invasive methods first, so she has been started on even more medications that can help her gut to move. We will give these a few days before moving on to the next thing. Her vomiting seems to have gotten worse over the last couple of days. So much so now, that her esophagus and throat seem to be irritated and inflamed. It actually hurts to swallow and she has lost her voice. If she's not vomiting, she's sleeping, as the anti-nausea meds make her tired. We are so ready to get this issue solved and for her to have relief. She's definitely growing weary. You can imagine what it's like to vomit every few hours each day. Combine that with throat and mouth pain, and you've got misery. She's been in the bed more, but we are constantly encouraging her to stand at least twice a day and sit up. That's also hard to do when you feel crummy and are groggy from meds.

Please pray for wisdom and guidance for these doctors. I do feel, at times, she always has them shaking and scratching their heads. I know they are doing the best that they can do and want so desperately to fix her, but it's equally frustrating for us when there are no answers. Also, pray for her stomach and intestines to completely heal and work properly. Pray that her kidneys will still recover and for increased strength.

Thank you all for praying, standing, and believing with us for our sweet girl's 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.

Tuesday, December 20, 2016

Others First

Today, I find myself broken again.
You'd think there was nothing in me left to break.
But, apparently that's not the case.

I cried so hard this morning, to the point of vomiting.
I guess that just needs to happen from time to time.
Again, I pleaded, on my knees, for my sweet girl.
In the words of my wise husband ..."We just have to keep praying and believing. She's God's daughter too." So, that's just what we have to keep doing. I have to remind myself to just take one day at a time, one moment at a time.
I pray for God's healing to be complete in His daughter, this precious treasure that He gave to us.
I pray most of all for her to be free of suffering and pain.
I can't imagine heartbreak worse than watching your child suffer, and suffer for such a long time.

I want to give you another glimpse into our La Petite Belle ...
Today is the day her sister arrives from Australia. She has looked forward to this for so long. She wanted desperately for us to be in the apartment, doing our normal Christmasy things, and to simply all be together for the week. Turns out, part of that won't happen.

She feels so crummy right now. Vomiting has come back, running fevers off and on, and general pain has returned.

I was sitting at the foot of her bed, rubbing her leg, and just looking at how beautiful she is, as she dozed in and out of sleep. Her eyes opened and her face immediately turned sad.

I asked her what was wrong.
She said she was "just upset."
When I asked her why, she said, "Because I hate that I'm having to deal with this while K Belle is here." (except she used her real name, of course)

She wasn't upset because of how bad she was feeling. She was upset because she thinks this is ruining K Belle's trip and our Christmas. That's the reason she's upset. 

This girl always thinks of others before herself.

Last week, when we were in the dialysis unit for her normal dialysis time, there was an organization handing out presents. One lady asked La Petite Belle what she wanted. Our girl said she didn't want anything. The lady continued to insist on La Petite Belle choosing something, pulling out all kinds of things she might like. La Petite Belle still said she didn't want anything. Finally, after the lady harassed her enough, she said she'd take something. After she chose it, my husband looked at her and asked why she chose that particular item since it was totally not something La Petite Belle was interested in. She said, "K Belle would like that. I'm going to give it to her."

Again .. my girl inspires me to stop being so selfish.
Even in her most painful moments, she apologizes to us, to her nurses, simply because we have to care for her and she feels like she's a burden. 
Our intention is to always make our girl aware at how amazing and special she is and that it's a privilege for us to be her parents and take care of her. We have to keep reminding her of that fact.

When Santa came by the hospital room today, La Petite Belle, again, didn't want anything. But, there was already a bag with her name on it.
Beau got a sweet hug from Santa himself.


I never knew how powerful a hug could be until now.
Sometimes it's just what you need.

Like I said, our sweet girl is still in a lot of pain. Results from a second ultrasound and MRI show an enlarged bile duct. This means the sludge from her gall bladder is just sitting there, not passing through. It's not clogged or obstructed so they do not want to do any type of surgery. It's all too risky for La Petite Belle. They want to wait some more and see if it corrects itself. Her liver enzymes are trending down, so that 's a good thing. Her body is really needing to fight this ... whatever it is, whatever the cause.

The main concern right now is this hemolysis (her body breaking down her own red blood cells). Her hemoglobin is dropping significantly just in a matter of a day, which means she is requiring blood transfusions every day. She got a second dose of Rituximab, an immune suppressant targeted at getting rid of the antibodies that are causing the red blood cells to break down. The other two options to treat this are not optimal for our girl. One is steroids, which the doctors don't think she could survive another round of those. And, the last one is plasma exchange (removing her plasma, cleaning it of the antibody, and putting it back in her body), very similar to dialysis. We are praying and hoping that the Rituximab does the trick. She didn't show much change with the first dose, so hopefully this second dose will work. The doctors say we need to wait another 5-6 days to see if there's improvement or if the hemolysis slows down.

All that's going on in her body has caused her kidneys to take a back seat, yet again. Her urine output has been minimal. That makes us have to worry about the amount of fluid she's getting, which is more than she's been having to get in months. With more fluid and no real urine output, there is a concern that she would need more dialysis. She may have to have extra treatments if need be. We are praying and hoping that that's not the case ... that she will have more urine, and need less blood products.

And, of course, she's been in the bed a week, which means she's getting weaker. We try to get her up as much as she can tolerate. It's hard to do because she's in so much pain.

Now that we know we are facing more time in the hospital, we are trying to plan Christmas accordingly. We are hoping that we will get a room on La Petite Belle's "home" floor tonight. The doctor told us there was a discharge and that the plan was for us to have that room. Does the plan always work out? Absolutely not. But, we are hopeful that we'll at least spend Christmas in our second home, all together, as a family. We will just have to make the best of it!

You have no idea how grateful we are for your prayers, love, and support. Thank you for continuing to pray.
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, December 16, 2016

Mawage

"Mawage is what bwings us together today."


If you have no idea what this all means, I will seriously have to reconsider my thoughts about you.


It's classic lines from The Princess Bride, silly.

I speak of mawage because today is Beau and I's 22nd wedding anniversary. Yep, 22 years.

We have had rough patches throughout those 22 years, but nothing compares to what we have been going through the past year, actually year and a half.

I always thought marriage was pretty easy. Really, it has been for us most of the time.
Sure ... there's the annoying stuff that you have to deal with in any relationship. And, that's what you do ... you just deal with it.
But, then there's big life-changing stuff that you never in a million years imagined you would have to go through. That's when you have to lean on each other the most. We've had to do that, especially this last year. We're really all each other has had.
I fall apart most of the time. Beau is strong, holds my hand, tells me everything will be okay.
Beau falls apart. I hold his hand, tell him we'll make it through this.

Now, let me be totally honest with you. It's been the toughest year on our marriage.
When life is gut-wrenchingly painful, emotions run high. Everything we deal with internally affects what happens on the outside. Things get said. We hurt each other's feelings.
We also don't get much time to spend together like we used to ... the date nights, the boring nights on the couch watching TV, cooking together in the kitchen, alone time, and you know ... the intimate stuff married people need to do. Yeah, all that stuff becomes last on the list.
This contributes to the pain, the hurt, the heartbreak. The next thing you know, you're in an argument over the most inconsequential issue ever.
Wait ... I forgot one of the most important factors in circumstances like these ... exhaustion.
Exhaustion can hurt a marriage.
We have tried our best to take as much time alone as humanly possible, but, unfortunately with our life right now, it's ridiculously hard.

So, we try to adjust.
We take moments.
A walk to Subway for a sandwich while La Petite Belle is asleep has become our version of dates.

It was getting easier once we got discharged. We were finally able to simply sleep in the same bed again. But, now we find ourselves back inpatient and back to our old routines.

Here's what I've learned about our marriage this year:
1. There is no other person whom I can lean on more than my husband. He's really the rock of our family. He knows what to say. He knows how to handle things. I feel safe when he's around.
2. We make a great team. We have had to truly work together to care for La Petite Belle. We know what works and what doesn't, and we pretty much have it down to a science. I've come to the realization that God had prepared us for this moment long ago when we worked together for so long.
3. We need time to focus on us. A marriage cannot survive when you are totally preoccupied 24/7 with other things. Granted, we've had to be most of the time. But, we have made as much of an effort as we could to remind ourselves of how this family even got started. It was us. We have to take time for us.

With all that said, there is no one else I can imagine standing beside me through this journey. Beau is an amazing dad and husband. The way he passionately loves his family is incredible. 

This anniversary we spend at Texas Children's Hospital. Not my first choice, but just the way our week happened. I'm okay about it. Maybe we'll grab some Chick-fil-a or take a walk to Starbuck's. I will definitely take a rain check on our anniversary celebration. There will definitely be a date in our near future.

Happy Anniversary, you amazing man! I love you more and more.

As far as an update on our girl goes, we are still inpatient. This is our fourth admittance since we were originally discharged before Thanksgiving.

Fevers are what keep putting us back in the hospital. Each time, blood cultures are drawn and the doctors look for infection, whether it be bacterial, viral, or fungal. And, each time, La Petite Belle's blood cultures come back negative. She will go a couple of days without a fever and then it spikes again.And, this whole process repeats.

Doctors suspected some type of fungal infection. A lot of times these are the hardest to diagnose and treat. A CT scan was done of La Petite Belle's chest and sinuses. Because some of the scan was vague, the doctors wanted the ENT doctors to explore her sinuses and take samples for biopsies. That was done on Wednesday. As of today, all of her cultures continue to be negative and the doctor who performed the sinus procedure said that La Petite Belle's sinuses looked pretty good to him. She did have a lot of inflammation (acute sinusitis), and he opened up her sinuses to help her breathe. We still have to wait on the final pathology results from the procedure, but everyone is optimistic. La Petite Belle is being started on an antibiotic specifically for acute sinusitis. 

The other issue we seem to be dealing with is hemolysis, where La Petite Belle is breaking down her own red blood cells, so she is not able to hold on to her hemoglobin very long. She has been requiring way more blood transfusions than she has been before. The doctors aren't totally sure why this is happening, but it has happened in the past and corrected itself. It does occur sometimes due to the body fighting a virus or infection. That's the thought right now. The doctors have given her a dose of another immune suppressant aimed at stopping the production of the antibody that is attacking her red blood cells. Now, we just have to wait, yet again, to see if she will start to hold her red blood cells again.

She's been in a lot of sinus pain and headaches due to the procedure and been able to get some doses of Morphine to help. And, of course, she's not a fan of being back in the hospital, especially not on our "home" BMT floor. There were no rooms so we're stuck on another floor.

We're praying that La Petite Belle will, not only feel better, but will be able to be out of the hospital before Tuesday when K Belle comes home from Australia. Hoping we will have an uneventful, family Christmas at home here in our Houston apartment.

Thank you for continuously praying for our sweet girl's complete healing. We appreciate your prayers, love, and support.

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, December 9, 2016

Jeans and Life

I have a pile of jeans, folded up, at the bottom of my closet, that I can't wear anymore.


Yeah ... sucks.

In a raging, mad fit, I frantically tried them ALL on just to get it over with and face the truth.
The truth is I don't look the same.
The truth is I've gained weight.
The fact is my hips have gotten wider and my tummy has gotten plumper.
It's what happens sometimes when life is hard.
It's sad and depressing to me, but I try not to be too hard on myself.

I have three pair of jeans that I struggle to get into when I have to leave the house. Yes, there's always the leggings option, but I'm a proponent of having a long enough shirt to cover my butt when in leggings. Well, as luck would have it, none of my shirts are long enough anymore. So, tight jeans it is!

It seems to be the perfect picture of how my life is right now.

It's uncomfortable just like those jeans.
Trying to get them on is definitely a struggle. 
But, I have to put them on, one leg at a time each day.
Throughout the day, those jeans freaking hurt. 
This life hurts right now, at so many unexpected times all day long.
But, I have to wake up each day and live it.

Yes, it still hurts.
You'd think I'd be used to all this by now.
But, as long as your child feels sick or is hurting, your hurting doesn't stop.

I'm trying to adjust.
Adjust to the fit of those tight jeans.
Adjust to the fit of this unfamiliar life.
Adjust to how my heart aches each day.
Adjust to not knowing the future.
Adjust to living a life with no plans.
Adjust to living life day-by-day, moment-by-moment.

I am thankful for some good moments lately for La Petite Belle.

We are noticing that there's a good three to four hours during the day where La Petite Belle feels okay. We try to take advantage of those moments. Those moments give us hope that there will be days ahead when those hours are extended to twelve, eighteen, and, finally, twenty-four hours a day.

Eventually, I'm hoping to be comfortable in all my jeans again. That's gonna take work and planning on my part. But, I believe I will get there again one day. It's just gonna take some time. I just have to be patient and cut myself some slack.

The same goes for my life, our life.
We will adjust. It will feel okay again. It will feel "normal" again some day. 
It's just gonna take some time. We have to cut ourselves some slack.

Life changes.
We have to change with it.
People may claim that they don't change. That's a complete fallacy.
People HAVE to change. It's called growing and maturing.
Embrace it. Don't fight it. Life requires it.

I'm trying not to mourn and grieve the loss of our old lives, but to move forward with what we've been given. I'm working even harder to not mourn or grieve the loss of the "normal" life my daughter is missing out on right now. That's the hardest. It's what makes me the most angry. I pray each day that God would restore everything that has been stolen from her.

Thank you for continuing to pray for La Petite Belle's healing to be complete. Pray for complete healing throughout her gut, her kidney recovery, her strength, and overall peace in her mind and spirit.


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, 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.