Friday, April 7, 2017

Cheated

That's how I feel on so many levels, especially for my precious daughter. 

My heart still breaks during the moments when I see her crying over lost friendships, over just plain being sick, missing her sister, horrible memories and flashbacks from the hospital, being angry, and just wishing God would completely finish this healing process right now.

There are so many reasons my heart aches. But, seeing her hurting in any way, shape, or form is the biggie.

Sure. I'm hurt for myself, for my husband, and for our family, in general. But, I'm hurt mostly for her.

Just this week, she was talking about wanting to go swimming, such a minor thing, I know. Before this all happened, La Petite Belle lived at the pool. In the summers, she swam almost every day. Now, with her dialysis catheter and new line, that's not an option. Just typing that makes me angry. Not being able to swim isn't that big of a deal and there are much bigger things that she's missing out on. Heck ... right now, it's simply the ability to walk. But, it's yet another reminder of what's been stolen from her. And, my anger rises up again.

I run the gamut of emotions throughout any given week ... from anger and sadness to contentment and joy. No matter how I feel, I remain forever grateful. That will never change.
I will remain in a state of gratitude, thankful for God's healing and provision.

Yet, my daughter's been cheated ... cheated at life.
Although I can look back on my teenage years and think ... eh ... they weren't that great, honestly. So many people think they're miserable anyway. But, I still wish she was able to experience the typical high school/teenage stuff. In the grand scheme of things, I realize this isn't that important either, but it is to her. What's important to her is important to me. No matter how much I try to downplay these life experiences, they remain important to her. Her friendships were really important to her, and not having most of those anymore is devastating to her. It's sad to watch her go through it. It's hard enough to deal with lost friendships as an adult, much harder for teenagers.

Just last night, I was reminded that three summers ago, La Petite Belle came back from church camp and told me she knew what God had called her to do ... reach her school for Christ. That was the year she started up a Bible club. That was also the year of her diagnosis and when she had to leave school. If that's not a straight-out attack on her life, I don't know what is. And, the attacks have continued since then and cheated her from so much life. Our entire family's been cheated. And, anger rises up in me again.

Since our last discharge (Monday night), we start again with trying to regain some sort of normalcy. Normalcy doesn't come easy. Houston still doesn't feel like home no matter how hard we try to make it that. We just moved into a bigger apartment to give La Petite Belle more space and her own bathroom. Signing a new one-year lease was daunting, knowing that ... yes, we're here for at least another year. We continue to search for jobs, with each of us sending tons of resumes out, almost daily. I've been on three interviews and Beau has had a couple of opportunities come up, but nothing has panned out yet. I don't understand why. I'm trying to just trust God on this one and know that He will provide just as He always has.

La Petite Belle is definitely feeling better and stronger. She remains on Vancomycin for another couple of weeks to make sure this MRSA is gone. I hate that this is the only antibiotic to treat MRSA. It's so harmful to the kidneys. Her kidneys so need a good, long break from all this. La Petite Belle's kidney doctors are already talking kidney transplant, while I can't even go there in my mind at all. We will continue to pray for these kidneys to simply recover and that a transplant wouldn't be necessary. The odds are not in her favor here, but I know God is. I keep reminding the doctors that La Petite Belle is NOT a typical renal patient. To which, they nod their heads in agreement. Actually, she's not a typically patient for any service we've seen here. She's simply a walking (yes ... walking, small distances ... step by step) miracle. Aside from the kidney issue, her main issue she's dealing with is still eating. She's still off of her TPN and eating every day. The only problem is she's not eating enough, no matter how hard I try to force her. Her dietitian has decided to give her a type of TPN during dialysis on Mondays, Wednesdays, and Fridays to try and supplement her. She's doing so well not being on the daily 12-hour infusion of TPN, no one really wants to start her back on it.

La Petite Belle seems to be feeling more like her old self, which is so good to see. She has moments when she's extra tired, but she's definitely more mobile than before and walking from room-to-room at the apartment. She's trying to do a lot more things on her own that we all take for granted ... getting dressed, standing at the sink, going to the bathroom by herself, bathing, making her own food. She's getting stronger each day, for sure, and has an appointment to begin outpatient physical and occupational therapy late next week.

Another step in her progress is starting school up again. That also happened this week. La Petite Belle is already working on a English and social studies project and will begin math and chemistry next week. Yes, she is behind, but wants to work on catching up as much as possible, which means trying to finish her sophomore year by the end of summer. She's definitely ambitious, just like she was before all this. I'm so thankful to see that in her again.

We had such a busy few weeks with being inpatient and the move.
Here are some pictures and videos from the last couple of weeks.

This was the day I knew La Petite Belle was feeling better. We went on an outing to the garden.


Singing with one of her favorite nurses...


She was SO excited that she got to eat lunch with Brittany, her dietician. La Petite Belle adores her!

We spent lots of time in the room because she was on isolation and couldn't go out on the floor, only outside.

And, this was us painting a few nights ago at an event that was held at our apartment complex. She did so well, and was beyond tired from all the physical activity she did this day. So proud of her!

Thank you for continuing to pray for us. Please pray for healing in those kidneys, an increase in appetite, overall strength & health, jobs and provision as we press on through this journey.

For those who have given to us and continue to support us financially, we have moved our fundraising campaign to a different website. COTA.org (Children's Organ Transplant Association) is a fundraising site similar to gofundme.com, but better. It is better all around for everyone. Gofundme.com keeps a percentage of each donation. COTA.org does not. Also, through COTA.org, the donor's receive tax credit.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: https://cota.donorpages.com/PatientOnlineDonation/COTAforTeamKatieG/.
All gifts are tax deductible. All funds go to cover medical bills and expenses.


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