Tuesday, April 28, 2015

We have a date.

And, I don't mean dinner and a movie. Honestly, that kind of stuff has been the farthest thing from Beau and I's minds the last couple of weeks. We've barely had any moments alone at all. And, if we are alone, we're exhausted and asleep.

I kissed and hugged him this morning, after apologizing for throwing his good shoes in the garage sale pile which nearly sent him into a nervous breakdown, and told him with confidence, that we'd have a few minutes alone soon. Hopefully. Maybe.

The date I am referring to is the date for our blood tests to see if we're a match for La Petite Belle. The date is next Monday. The nurse said it typically takes even longer to get an answer than we got. I'm thankful that God helped speed this along.

So, we will drive to Houston Sunday afternoon and spend the majority of the day at Texas Children's Hospital on Monday, meeting with the doctors - one doctor from the hematology department doing the testing and the doctor from the transplant department. We are not really sure when we will get the results back from the testing, but praying for more quickness there too. Waiting weeks for results, while my child is getting transfused every week is not ideal. You'd be surprised how vocal and protective mamas can get when it comes to their babies. I ask a million questions and expect answers immediately. Protection mode is in full force here.

So, until then, we wait ... and we go for infusions.

Tomorrow, La Petite Belle will be going for another transfusion ... two more bags of platelets and now, a bag of red blood. She needs both this time.

While the doctor also would like to boost her white blood cells, he's waiting until after the testing because this could affect the test. So, that may happen later next week. Until then, we use massive amounts of hand sanitizer and La Petite Belle will be wearing a mask this Sunday to church or any other crowded places. Y'all ... she's so ready to get out and not just to go to the doctor or hospital, as she told me yesterday. I did allow her to go to her small connect group last night. She said: "No offense, but you don't have to stay with me." She may be getting bored of me. I don't understand why. I'm pretty much the MOST fun person in the family to be home with. I even got outside and kicked the soccer ball with her for a bit a couple of days ago. We regretted it later when the bandage for the PICC line was hanging by a thread because she was sweating a bit. But, she felt refreshed, mostly from laughing at how "horrible" of a soccer player she says I am. Whatever. I'm not that bad.

We start Homebound today. A teacher will be coming to our home to help La Petite Belle finish up the school year. We will be doing this twice a week.

Everyone asks how we're doing. That's such a loaded question. I don't think anyone really wants me to go into it, so I say, "good." And, we are. We are dong well. God is sustaining us through this. 

But, our family does run through the gamut of emotions in a day, even La Petite Belle herself ... up and down, up and down.

In the midst of caring for her, which has become like a full-time job, we've been trying to be as normal as possible. I still have to work. Beau still has to work. Thank God that both of us have flexible jobs and great bosses who understand our circumstance right now!

Yesterday, as Beau stayed home and I went to work half the day, someone said to me, "You're still smiling."

And, I thought ... Am I? Am I smiling? I don't feel like I'm smiling.

But, what else can I do?

I have to smile.

I can only smile because of Jesus.
I can only smile because of the hope I have.
I can only smile because God is sustaining me through this.
I can only smile because I serve a good, good Father.
He loves me.
He loves La Petite Belle.
He loves our family.

So, if I'm smiling ... that's why.

I'm trying to keep as much normalcy that I can in our lives right now, which is very difficult. But, I'm trying.

The enemy would like nothing less than our family to be divided right now. I can see it so clearly. But, it's not going to happen. God will bind us closer together than ever before. Although this is a hard thing, and each of us are experiencing different emotions at different times, God will prevail. We can't let anything get in the way of that. And, the attack is fierce right now, but our God is fiercer.

In the meantime ... normalcy.

In the meantime ... our house is for sale. Tell all your local friends to come buy our house.

In the meantime ... K Belle's high school graduation is approaching and I'll be sending announcements out this week. What in the world? Where did the time go?

In the meantime ... Work.

In the meantime ... my brain may not work as well as it did before. And, we all  know what percentage I was working with before all this. So, pardon me if I forget or don't have a clue what's going on.

And, please, oh please ... don't be weird around me. I'm still the same old me. Same old me going though some hard stuff. But, it's still me.

Again, we appreciate all the prayers and support!