Many of you know that we had a MRI on Jacob a few weeks ago. The results of that were not exactly what we were hoping. The lesions in his chest and back were described as "innumerable," as in too many to count. They also have grown significantly and are invading his spine, a direct danger to his health and safety. They have invaded and crowded so much that his spine no longer appears to be straight. This growth demands treatment, which our physicians in Boston stressed to us. However discouraging, this was not totally unexpected news. His last treatments bought us 2 years of good health, and no problems, for which I am thankful. It is discouraging though to be right back here, even we knew eventually we would be.
What we did not expect, however, were issues with the lesion in his brain. I've completely dismissed any possibility of any issue with this lesion from the day we found it, for obvious reasons. Yes, I am a medical professional, and consider myself a realist, and don't generally indulge in denial; but the possibilities of what could happen with this lesion were too terrifying for me to contemplate, much less accept. Our Boston team was concerned about the size of the brain lesion and had their Neuroradiologist review his MRI. He agreed that the size was significant, as well as its location deep in the center of his brain; and we really needed to get a better look at this lesion to see what it is we are dealing with, and assess the threat it could pose to Jacob's future. When we go up there to treat his back and chest, they will also be doing a cerebral angiogram to map this lesion, and see what, if anything, can or needs to be done about it. Friends, I know what that means, and I am terrified.
I have prepared myself for the past 2 years for his condition to rear its head again. Never an "if", always a "when." I've told myself I was ready for this, am stronger now, more informed, more prepared, (even less post-partum), and that I was ready to deal with this head on and not fall apart. But now it's here and happening, and I can't find my way. I feel so unsteady, and find myself clinging to this child as if by doing so, I can protect him, or maybe just keep myself upright. I am trying to keep from drowning under the weight of it, as I did before, but somehow feel like I'm failing to. In arrogance, I rage inside, how this is not supposed to be happening to my child. The anger, the grief, the fear, are so heavy. I have fallen into darkness before, and fear that place again. Still I feel myself slipping, unable to find a grip on anything.
But I will be thankful. Because today I got a card from a 14 year old Freshman who heard less than 5 minutes about my son and what is going on from my dad in class. That kid that I have never met, made a bag, with a cape, superhero masks, coloring books, crayons, snacks, and comic books from his own collection, and wrote a card to my son, and to me. He sent these things to a child he doesn't know to help encourage him in his fight. And this 14 year old kid that I have never met, sent this card, with an message of encouragement, to "Jake's Mom."
How did he know? I looked at this card, and the words burned right off the page. I instantly began to cry as they mirrored my heart in a way that this 14 year old kid could not possibly know. I know that grace and hope are given in the darkest places, amidst fear, guilt, anger, grief, and everywhere in between.
I won't just give thanks today, I truly am thankful.
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