Difficult Times

I can't tell you the number of times I tried to write this post and the words just weren't there. I still don't know if the right words will come even now, but I feel like I can't put this off any longer.

About 2 weeks ago, we received some difficult news. Camille's 24-hour EEG came back normal (meaning no seizures), but her MRI was abnormal. The neurologist called to tell us that her new MRI showed that things in Camille's brain were changing, or progressing. Her brain showed signs of cerebral atrophy (it is getting smaller instead of bigger) and dysmyelination (the myelin, or coating of the nerves, in her brain is not forming and functioning properly). He said that this indicates several things to him: one, it appears that she does have something progressive, which will get worse over time; two, the atrophy and dysmyelination are usually indicative of a leukodystrophy.

Leukodystrophies are just plain awful disorders. They are neurodegenerative, and associated with extremely short life expectancies. Our sweet Camille continues to be unique--the neurologist said that he did not recognize the pattern of her dysmyelination, which means he could not pinpoint which specific disorder she might have. Therefore, he and genetics consulted, and decided to do a Lysosomal Storage Panel, which is essentially one test that looks at many different disorders at one time. We had the blood drawn for the panel last week, and should hear something by the end of this month.

I feel such a strange combination of emotions right now. In one sense, I am relieved to know something and to be very close to finally knowing what is going on with our little girl. Then I battle the guilt that comes along with that sense of relief. Why should anything about this news be a relief? It's horrible and terrible and heartbreaking. I once said that not knowing was worse than anything, but is it worse than this? Wouldn't it be better to not know this?

I feel such a profound sadness that I can't even begin to describe. It makes my chest hurt, and it makes me feel like there are permanent tears stuck in my eyes, ready to overflow at any moment. It makes me question my whole belief system, however cliche that might be. It makes me wonder how I am going to watch my child battle a progressive disease, how I am going to watch her deteriorate, and still keep my faith and sanity.

We ultimately do not know anything definitive at this point, and I am holding onto that. And what we do know remains true. We know we love Camille. And we know we love a God of goodness and mercy. Whatever we find out, whatever happens from this point on, this will not change.

Thank you for your continued prayers and support.