Raw Faith

Almost 12 hours ago, I received an email from Hannah Joy's hematologist. He said her liver function tests have been abnormal and he needed me to page him so we could talk. My heart started beating rapidly. This was not what I was expecting.

As we talked, he explained how these tests had been concerning him for about 5 months now. He asked about her dose of Exjade (aka, the black box warning medication), telling me how what he was seeing could be related to it. He told me she is on a pretty high dose of it for her age, so he would think about it. I then asked if her kidney function labs, which have quadrupled since she started this medication, could also be related. He pulled it up to take a look, and said, oh this is definitely Exjade, We will likely do a "holiday" and then start back very slowly. Because, Hannah Joy is otherwise responding well to the medication. Her iron overload is improving. Yet, there seems to be a big cost to my sweet girl's little body.

Since that conversation, my mind has been reeling. The medication I am giving my daughter is affecting her liver and kidneys. It's not a nuisance side effect of fatigue, nausea or diarrhea. It's liver and kidneys we are talking about. This.Is.Hard.

Earlier this week I was told I show a raw faith. Not just the kind of faith that is easier to have when all is going well. But the kind of faith that persists when life is very uncertain. The kind of faith when life is very uncomfortable. She explained that adopting four little girls, two with a chronic, life threatening condition is not comfortable or easy. It requires raw faith. She explained that saying yes to a family mission trip which will likely cost 1/5 of my annual salary requires raw faith. She said that raising Mia, who has a life complicated not only by beta thalassemia major but also Russell Silver Syndrome and learning disabilities requires raw faith. And I think now, given that Hannah Joy is showing serious complications to a medication I am giving her, requires raw faith.

As I have been considering this concept of raw faith, I wonder if it requires acknowledging that sometimes things come up that are completely out of control, and there is nothing I can do but put trust in the fact that this is where I am *supposed* to be. There are no easy answers. Life is filled with uncertainty and hardship. No one is immune to struggle. Yet, somehow, there are mercies along the way. A mercy here is that Exjade is not the only medication to treat iron overload. Hannah Joy could get an infusion pump. I have a good hematologist who understands the liver function test abnormality, and I have the ability to speak up which connected the kidney function tests.

Last night, I did not give little Hannah Joy her dose of Exjade. It is the first time she has missed it in the last seven months, other than one other time when she had a fever. I am diligent about both girls' medications. But last night, I could not do it. My little sweetness asked why she wasn't having her ketchup and medicine. As she placed her little hand in mine I asked God for clarity. I asked for help making this decision about which medication will be the best and safest to give to her. I have raw faith that He will answer.