A Little Water Goes A Long Way

I awoke with a start, Gee thanks Holy Spirit, and felt the need to write an update in Bernadette's medical group. One that I feel is relevant here. It has been so difficult to write anything this admission. I have been taking it as a sign to be more present in the moment. We did very little phone time this weekend, just enjoyed time together before distance separated Bernadette and myself from my husband and our other children.

So, I'm sharing it.

So now that I shared the medical side of things, let me share the other component. I get asked, often uncomfortably, why I remain so strong and joyful in the midst of all this anguish. Let me reiterate: I am not wonder woman. I do not brandish a cape or fight villains in my spare time. I am not someone to idolize. But I am a woman of faith. This may seem counterintuitive, again, to some. I am a lover of facts, of numbers, of science. I love knowledge, reading and learning from history to biology, literature (English and Russian novelists are my favorite) to geometry. I have been trying to teach my children coding through various websites. I like to weigh all options and plan for 20 different paths in my head. But, time and time again, throughout my life, I have been shown science and facts only go so far and then comes God. This current admission is more proof. To demonstrate, I have to share a difficult story. On the 7th in the morning, upon arrival at the ED, Bee had an IV placed. No big deal. By the early afternoon, still in the ED, she needed more labs and a second IV. Her hemoglobin was very low (5.1) at the 9 am placement. So with active breakdown of her cells, it was much lower, dangerously low--though we can't quantify it because it wasn't checked again until much later. She was looking pale yellow. Her fight wasn't as strong in her arms. She was struggling to breathe. As I was holding her for this second IV, she looked me dead in the eye and this is what she said: "I don't want to do this anymore. I don't want to hurt anymore." And for maybe the 3rd time in her short life, I cried during an IV placement. I knew, looking into her rapidly yellowing eyes, she wasn't talking about the trauma of rooting for an IV--she was talking about life. At that point, her speech started to slur, her eyes rolled around and she became harder to wake. But she held on. Despite, it all. All the scientific signs that pointed to this being close to the end went out the window. Critical but stable is never a title one wants to have. Fast forward a week, and a dear friend was sitting in our PICU room. She asked if we had needed anything and I responded Lourdes water. So there she was, a bottle in hand, with love and support. Mind you, it is increasingly difficult to find Lourdes water since the French government clamped down on Lourdes sending the waters to people. So now you pretty much need to know someone who went there and is willing to share some with you. I've posted on it before. We used to bathe Bee in it pretransplant. And bless her with water from Knock, which I only learned much later after transplant, is miraculous too. There is no science to this water. But when I put the bottle aside, saving it for the correct time, I didn't tell Bee we had it specifically. A few days later, while I was packing, she hit her foot on the railing of the bed. "Mama!" She screamed. "I need the water." I handed her her sippy cup. "Not that!! Not that water!! No. The water that makes me feel better. The water in the blue bottle! I need you put water on my leg. It takes away all ouchy." I pulled out the Lourdes water. "This one?" "Yes! Just little bit. Right here" So I did. And it was all better. Then maybe for good measure, I poured some on her head. But after that moment, she didn't need anymore transfusions. After that moment, even though her labs indicated that she was breaking down cells, her hemoglobin started to stay up at healthy for Bee numbers before apheresis. So, yes, science is a component to saving her life. I explained plasmapheresis yesterday. But, as always, there are some things you can't explain with her with numbers, data, studies, etc. And it's things like this, coupled with other cute stories that reaffirm what keeps me going. There is a God and He most definitely is good. "Give thanks to the LORD, who is good, whose mercy endures forever" (psalm 106:1 NABRE)