Thursday, June 25, 2015

It's a marathon, not a sprint.


Someone made that very statement to me a while back. It stuck with me. 

This whole journey which we are embarking on is a marathon, not a sprint.

People need to know that this is not a quick fix or process. Not only is the waiting long, but the recovery can also be long. I know people get anxious and then just get bored with the whole thing. They get tired of asking questions and again, like I've said in the past, don't know how to act around us. It's just gonna take time, guys. We'll get through it, but it's gonna take time.

Now, don't get me wrong ... I still remain hopeful. La Petite Belle is a very strong kid, always has been. She was strong-willed and anyone who knows her has witnessed all this child is capable of, both good and bad. She has always been the picture of health. Her claim to fame ... as she tells others, "I've only thrown up twice in my lifetime." It's true. This child had no ear infections, no hospitalizations, no major viruses, no sicknesses at all ... until now. I know that she can beat any odds, especially with God on her side.

But, as I've learned in recent weeks, recovery can take a while. We're talking months here. Actually, the medical field doesn't say a transplant patient is fully recovered and their immune system back to where it should be until after a year post-transplant. A YEAR!

Even more, there's more evidence for her and I to be away from home longer than expected. As another person told me ... "no one goes home 100 days post-transplant." No one.

That was hard to hear. Not just because I want my baby home, but I want us to be home with our family. I know that she could be the one ... the one who has an amazing recovery and goes home early, but if she isn't, I need to be prepared for that, too. God will heal her either way and that's all we desire.

There were tears from La Petite Belle just the other night as we got rid of our couch. She's emotional enough as it is right now, but she just wanted to lay on our couch (which we got rid of because we're moving in just a couple of weeks ... currently sitting around on patio furniture). She loves our house. She doesn't do well with change. Never has. And, her life is about to get flipped upside down more than it even has been the last few months.

I still cry. Not as much, but I cry.

When I think about being away from my husband and oldest daughter (who's about to leave the country), I get sad. I cry when I think about all that I will have to be for my daughter, thinking I may not be strong enough to do it. I realize I have to do it. I don't have a choice. But, I wonder if I can be all that she needs me to be. I have to be strong. I have to be positive. 

I get sad when I think of the possibility of us not being home for Thanksgiving, and let's not even think about Christmas. I can't bear that thought.

The thoughts that enter your mind when you're going through stuff like this span from the best, positive thing to the worst-case scenario. I constantly have to take those darn thoughts captive ... even crying my eyes out, I still take them captive and move on. You just can't allow your mind to stay in a hopeless spot. It wasn't meant to be there.

I have to keep expecting and hoping for the best, because that's what my God, my Father, would want me to do.

When I tell my girls I'm going to give them a gift, I would hope that they think that it's something good and not something harmful to them. When my girls think about me as a mom, I would hope that they know that I would always want good things for them and their lives. And, of course, they know I want them well ... I'm the one who takes care of them and always looks out for them, begging them to stay healthy.

It's the same with our God. He loves us even more than our parents, or we, as parents, can love our own children.

I know it will be a long time. I'm preparing mentally for that ... crying all the same, but I'm preparing. I'm preparing for the marathon.

I see how people have been so loving and supportive and just plain old wonderful through this. But, as time goes by, the calls and texts become less and less, the meals don't come anymore, the money stops, people just start to forget. Now, I'm not blaming anyone. People have their own lives. I get it.

But, just know ... running a marathon takes a lot of training ... weeks of training, sometimes months. There are those who are with you at the beginning ... the sprint. In fact, there are SO many people who will be there for the sprint. But, thank God, there will be those who are with you through the long haul, through the whole marathon, all the way to the finish line ... those who will run right beside you, pushing you and saying "you can do it". 

Those people will be few and so extremely valuable.

I do worry that this experience will change me. I worry that I will become more introverted (don't even snicker ... I'm being serious here), that I won't want people around anymore, that I'll start to feel uncomfortable in groups, because I will be mostly alone for so long. I pray that this changes me for the better and not cause me to be something God never intended me to be. I pray that God will sustain me and just make me stronger so that I can be a better servant ...  a better wife, and a better mom.

As far as the latest update goes ...

The donor had her physical yesterday. We have tentative admittance and transplant dates. We also have a tentative appointment date in mid-July for all testing that will need to be done before admittance. As soon as we know the donor is cleared, we will get confirmation on all the dates. As of right now, my girl continues with her weekly appointments to check counts and get transfusions. Yesterday, she had two units of platelets and two units of red blood. She is also getting her Neupogen shots to boost her white blood count every other day. We see a OBGYN today to discuss what we can do to stop her cycle due to the fact that the previous attempts have failed. She needs to keep as much of her blood as possible. Being a girl is just tough sometimes, isn't it? We hope to have everything confirmed on dates by the end of next week and be able to let all of you know exactly when we're leaving. 

Again, thanks for the prayers and support.
If you would like to support La Petite Belle's journey to healing financially, you can find more information here - http://www.gofundme.com/Katieg. All money goes toward medical bills and expenses.

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