Saturday, January 21, 2017

I wonder.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Anonymous said...

Praying for all of you. Haven't stopped. I'm reading Job right now and praying that all will be restored as God did for Job.

Anonymous said...

A friend shared a link to your blog and I just read it. Praying for Katie and her healing. Praying for you and your husband too. A month ago today, our 18 year old son died. We are still reeling from the loss and pain. May God be with you and your family. Your daughter is an amazing testimony of faithfulness.

Anonymous said...

For you being you.

Thank you.

Anonymous said...

Praying for you all

Anonymous said...

Dear Lord,

We lift up Katie to you. We bring her needs to your feet. We wash your feet with our tears and we beg for a healing. We cry out in confusion, in faith, in trust in your almighty will and your ability to heal miraculously. The laws of physics are limited and finite. But you, oh Lord, you created the stars and the earth, created these laws, and you can change them. You can ring about a restoration that can only be a divine ordinance. We intercede on this precious girl's behalf and we pray. Lord take away the suffering, the longstanding threshold of pain, allow the doctors to find the root of these ailments and abolish them. Bind every enemy attack on her health and healing process Lord. Give her hope beyond all doubt and strength beyond all reason. Give her peace that passes all understanding. Strengthen Daphne's mother heart Lord. Strengthen Richard and Kylie on this journey. Give them peace and comfort, allow rest to be abundant in their lives. We pray blessings on them, on the staff coordinating her care, and the doctors overseeing her medical needs. We ask you to do what only you can do, and we stand in the gap together, believing that you will.

Thank you for your love, grace, and mercy.
In Jesus' name we pray.


Lana Soileau said...

Love you all. Prayers always for your girl.

Anonymous said...