Hope

I just became aware of a foundational belief I have that I have never acknowledged consciously. Kind of a strange thing to suddenly confront something you have been assuming to be true without consciously choosing it.

My daughter Caroline (age 3) has severe cerebral palsy. Without going into a lot of detail, a sudden (and unexplained) loss of blood shortly before birth led to a lack of red blood cells to carry oxygen to her brain for an unknown period of time. The reduced oxygen caused severe brain injury, which resulted in her condition. [^^This picture is Lizzy with Caroline when she came home from the hospital after a couple of weeks in intensive care.] She is now at about a 3-month-old developmental stage, she is fed by a g-tube, and she has frequent seizures (multiple each day, although recent treatment has reduced that number... currently between 0 and 3 a day, a major improvement).

Today Christine took Caroline to her first day of preschool at the school for the blind (although her eyes function normally, it is unclear how well Caroline sees, or interprets what she sees; hence she qualifies for this school). Christine called me at work to say things went fairly well, although Caroline has been quite sad lately, and she was fussy through the preschool session. Christine liked the preschool teacher and aids, who didn't seem to mind the fussiness (which is good news since Caroline is often fussy).

The school nurse was there, instructing the teacher and aids how to use Diastat, an emergency treatment (a form of valium) for stopping long seizures. We have twice had to use Diastat, but each time the treatment still didn't stop the seizure and we had to take Caroline to the emergency room. I mentioned that to Christine on the phone, and she said one of the aids had seen it used effectively multiple times.

This revelation made me wonder (again) about Caroline's seizure activity. There are various things about her seizures (like the ineffectiveness of Diastat and their general persistence despite numerous treatment strategies) that have made me think her seizures aren't entirely normal. (Though what seizures are normal?) This thought then led to another thought, which relies upon my previously unacknowledged belief about things: Someday I'll understand exactly what is going on in Caroline's head and I'll know why diastat didn't work for her and what about her seizures is different than other people's seizures.

This belief in a future revelation of knowledge about Caroline's condition is not a hope for a medical cure or a faith in the abilities of doctors or scientists to understand the brain better in my lifetime or hers. Rather, it's a belief that after this life I will be able to converse with God and with a now-communicative Caroline about her experiences here. It's a faith that God will someday make it all known to me, and that someday—when my own capabilities for knowledge are vastly increased—I will understand the complexities of the human brain and I will comprehend in minute detail all of the things that are wrong with Caroline's brain and how each of those problems explain her various symptoms, from seizures to fussiness to inability to eat. It's an expectation that someday I'll understand what caused all of this.

Furthermore, it's a hope that one day I'll know exactly what she was thinking while all this was going on. That I'll know whether she understood what was happening around her and to her and whether her cognitive abilities increased during her life and whether she comprehended what we said to her and whether she was spiritually nurtured and whether she felt deep emotions and whether those emotions were generally positive and happy and whether she knew she was loved and prayed for and wept for and cherished ever so deeply.

And more than that, it's a belief that one day I'll hug her and she'll hug me back. That we'll talk and laugh and play together. That she will share her insights and humor with me and she'll listen to mine. That she and Lizzy will be best of friends, loving each other as sisters only can. That she will understand and show gratitude for all that Christine did for her—all the time spent holding and consoling and cleaning and feeding, all the stress and worry and love of a mother for a special child. That all of us will get to know the talents and personality and brilliance of this wonderful member of our family who is so closed to us now.

So much of Caroline is a mystery to us now. Doctors and therapists have been able to shed so little light on what is really going on inside. Her abilities to communicate are almost nonexistent. She smiles at times, and laughs. She startles and cries. We can get a sense of things she likes and dislikes, but we're not always sure.

I believe that there is ever so much more to this beautiful little girl than I can sense now. And this underlying—and previously unacknowledged—belief is that someday I will understand it all. The answers will come. It will make sense. And we will all find peace together.