Tuesday, May 3, 2016

Unrecognizable

This blurry picture popped up from seven years ago. It's horribly blurry, but is such a great representation of La Petite Belle's personality. I miss this girl.

The constant barrage of Facebook and Timehop memories seem so distant and far away.

I don't recognize my life anymore.

It's so unfamiliar to me. I don't understand it.

Sometimes I have to convince myself that THIS is really it. This is my life.

It hit me even harder this week when Beau went back to Louisiana to load up all of our belongings to bring to Houston.

All my stuff is here. My hubby's here. My daughter's here.
But, my life seems so far away.

I'm missing a daughter who's on the other side of the world.
I'm missing the friendships I intentionally invested so many years into.
I'm missing the church where I sacrificed so much of myself for and loved so dearly.
I'm missing my hometown, where I know every road and building, nook and crannie.
I'm missing sleep ... comfortable, restful sleep in our peaceful home.
I'm missing the love of my Roxy Belle.

I'm missing time with Beau. Yes, he's here. But, he works. I sit at the hospital. He relieves me to go home for a while. And, I'm back again to relieve him. That's what our relationship has been. I miss him. I really do miss him.

I'm missing what our lives used to be ... the easy life really.
Life was easy. Of course, I didn't think so at the time and I worried about the trivial things that I never should have worried about.

La Petite Belle has said on many occasions while we've been here at TCH, that she just wants to "go home," and "misses our old lives."

Oh, how I echo her sentiments.

But, our home is here now.
Strange, unfamiliar here.

I don't like it. But, it is what it is.

Again, I sit here helpless.
I feel helpless in every aspect of the word.
I want to fix this. I want to fix everything.
But, NOTHING I can do will fix this.
The ONLY thing I can do is pray.

So, that's what I do. I sit on the couch in La Petite Belle's room and I pray throughout each day. My prayers are pretty much the same every day. I pray. I stand. I believe that God's got her best interest in  mind and I continue to pray for HIS best for her. It's hard to believe sometimes that this could be HIS best, but I know that God's best has to be better than mine. And, my best for her would be healing. So, HIS best for her has to be the same, no matter how bad the days look. I have no idea what the future holds, but He does. And, He works for our good.

We've had a rough few weeks, ending up with a dialysis catheter being placed in La Petite Belle's neck and her being on 24-hour dialysis for a few days in the ICU. The doctors say she has some kidney damage due to a lot of the medications, and her kidneys are just really overworked with all the fluid and transfusions she receives on a regular basis. Within the first 24 hours, she immediately started to look less swollen and the fluid came off. They will continue to monitor her to see if she will need intermittent dialysis. We're hoping that this is a temporary thing and she will show even greater improvement once she's off a lot of these meds and fluid.

La Petite Belle was also intubated due to fluid and infection in her lungs.This was definitely a scary thing. A sample was taken from her bronchial tubes to test for what it might be. It seems to be some type of fungal infection, which she is being treated for with additional anti-fungal meds. That has also improved and she was breathing on her own again several days ago.

This experience is definitely traumatizing to anyone, but even more to a child. And, although La Petite Belle is 15, she really is still a child. With so many medications, her mind definitely gets foggy. She gets anxious and overwhelmed. We pray for peace of mind for her daily. Some days are better than others depending on what's going on.

Not only does she get overwhelmed, but so do we. We want to be strong for our daughter, but we break too ... quite often as a matter of fact. It seems the longer we're here, the more we break. You would think we'd be used to it by now. But, we will NEVER be used to watching our daughter go through this. The longer she fights, the harder it is to watch.

Her once-strong body has become very weak and she needs help walking at this point. She will need a lot of physical therapy going forward. It's sad to see her athletic, muscular body deteriorate. I know that she can get it back, but it's going to take some time for sure.

There was no room available on our regular 8th floor, which has pretty much become our home these days. So, we were sent to the 7th floor ... another unfamiliar place, where we begin to have to explain things OVER and OVER and OVER again. It's exhausting. I see the looks of pity from the doctors on this floor when they're rounding, after reviewing her medical chart and history. Standing there listening to them review is heartbreaking. Her poor body has gone through so much. It's definitely showing signs of being tired. It's funny how I stand there and every suggestion they think is a new one regarding her medications and treatment, I shoot down as already been tried. Then, I get the pity look again. I honestly feel like I'm giving some of the new nurses quite a good education when it comes to La Petite Belle's care ... actually ... some of those 14-year-old doctors too.

Please continue to pray and lift La Petite Belle up. She went into this over a year ago so strong, but there's only so much a body can take, even a really strong one. Please pray for strength for all of us to continue to press on. Most of all, keep praying for complete healing of my sweet girl's body. Words can't express how much we appreciate all the prayers, love, and support. Thank you a million times ... thank you!

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.

4 Comments:

Anonymous said...

Continuing my prayers for LA Petite Belle and your family. Praying for healing and strength. Our God is an awesome God.������

Anonymous said...

Continuing my prayers for La Petite Belle and your family. Praying for complete healing and strength. Our God is an awesome God.
Judy Boudreaux

Julia de Boer said...

I have never met you but I saw your post through a mutual friend, Helen Burns. I have been praying for you, your daughter and your family for strength and for healing. May God grant you his peace as you go through all of this. This has been an incredibly long and tough journey and I pray that you would be strengthened and encouraged knowing that there are so many that are praying on your behalf.

B.Kay Smith-Jones said...

I am so sorry for your pain! My mother's heart breaks for you and I'm trying to constantly remind people to pray for your sweet girl. You've been so strong through all this and so has your whole family. It just is a really long battle and I know you feel weak. People tend to be less involved during a crisis. I remember when my daughter was sick, it was hard to go through the motions of every day. I didn't know how the world couldn't stop and take notice of what we were going through. I don't know you, but I feel bonded to you and your family after your husband shared your story with me. We will continue to pray and rally the troops until we see victory. Not a day goes by that I don't think about you. I teach at a rehab on Thursdays and we all join in prayer for LaPetite often. Those ladies have great faith. Love you and here for you! I've been tempted just to show up in Houston to give you all a hug. God has a great plan coming out of all this pain. I totally understand that it is so hard to see when your heart is breaking.