Its Just Not a Big Deal

As Allie and I sat and sorted through her stack of missed work for this week in 5th grade I could see the slits of her eyes begin to fill with tears. She barely has the ability to open her eyes. What tiny portion that was opened was filled with worry. "I just really don't feel good and I can't see." I knew she didn't feel well, so I offered to read everything for her. Then I realized she can't even see well enough to write so I thought I would offer to write everything for her too. As we sat and tried to decide where to begin and my puffy, blistered, fevered 5th grader began to fall apart I made an executive decision(you get to do that when your a mom). Its NOT A BIG DEAL. Its just not. 5th grade will come and 5th grade will go. In the grand scheme of things keeping up with her class each day that she is missing won't matter to anyone. It won't change the world. It won't be an event that forever changes her life. She is an excellent student. This is just not a big deal. So I told her we would wait until her fever breaks, her eyes can at least open up again, and maybe some of the worst blisters have begun to heal. We will eventually catch up. The work will get done, just not on time and its going to be okay.

I've learned a lot the past few years. One of the biggest lessons I've learned is to let the small issues go. There is no time for stress and worry during the times that Ashley Kate and I get to be home. I want our home to be a place where my kids feel no pressure from the outside world. A place where they know they will be uplifted and supported. A place where they can breathe deeply and relax in the knowledge that some things aren't worth the tears or the worry. At the same time I'm teaching them about things that do matter. People. People matter. Kindness. The things you do to serve others matter. Family. Its knowing that the people in this home will always be there for you no matter what you've done, where you've found yourself, or what has happened. Those lessons are far more important than any history lesson I've found, math equation I learned to solve, or word I can spell. We also are learning to do our very best at whatever we do. Not to give it a half hearted effort. Its not acceptable when your representing God to this world, our family to this world, or yourself to this world. So when she can see again, we will buckle down together and pull out that stack of work that is only going to grow taller by the day and do our best to complete it. Then I will tell her to hand it in, walk away, and don't worry one bit about it being late. Its just not a big deal.

In the meantime our beautiful girl is hiding her face under cold compresses for about 20 hours out of each 24. She is miserable. I've never seen her in this condition. We are doing everything you can possibly do to make it tolerable, but even those things don't seem to be helping her. We get a few laughs out of her each evening when the guys come home because she just can't help but giggle at the crazy things they have to say about her face, but other than that she is resting for the majority of the day and crying during the times she is awake. Its pretty traumatic when your only 10 and your face has literally disappeared. She's right when she says she can't even find herself in the mirror. We can't find her either.

As for the littlest pickle, she spent another night sleeping sitting up. Her cough didn't seem to happen as often last night and she remains fever free. She did cough so hard a few times that she began vomiting which is precisely why she is strapped sitting up all night long. With her history of aspiration and the memory of almost losing her exactly one year ago because of something very similar to what she is doing now we are taking no chances. The new plan from our transplant team was to increase her level of allowed output and allowing her amount of needed IV fluids to decrease in hopes to straighten out her lab work. We are all banking on the assumption that perhaps she was receiving too much fluid causing her blood work to look watered down. That may also explain the trouble she is having breathing and perhaps be an answer as to why her face and neck are having trouble draining. She could be fluid overloaded. So we are hoping this is what it is and that when we repeat labs tomorrow morning instead of on Monday that things will look a little better. If not then we will be going in somewhere for a blood transfusion, an albumin transfusion, a chest x-ray and perhaps some more vascular studies. My hope for her today is a little more energy, less of a cough, and clear breath sounds. If things wanted to go my way then thats what I would want to happen.

The good news about being in lock down with these girls of mine is all the time I get to spend staring at them and being grateful to be their mom. Also I'm getting a lot of long overdue cleaning done cause I can't leave the house. Closets, dressers, bathrooms, cabinets. All getting organized again. Thats good news because if it doesn't have a place in our house then I tend to get rid of it whether we need it or not. This house is too little to have things out of place. At this time I sure would welcome all of that therapy equipment to end back up in the family room though. Our Ashley hasn't had the strength or energy to touch any of it since last fall. Outside of being strapped into her stander on a few of her better days she hasn't done anything with any of it. Baby steps, right? Thats what I'm trying to convince myself of. She's home. She's breathing. Those things are important. The rest will just have to wait.

Well, I've rambled long enough this morning. I could probably find more to ramble about, but I realize I'm just wasting time to keep from having to switch the laundry again. That's not going to accomplish anything. Hope you guys are having a blessed week. Thanks so much for checking on us. Take care. Trish