Six years ago today, J’s body and brain openly betrayed him for the first time… that we know of.
Six years ago today, 9 months pregnant, I watched in horror as his eyes remained in the back of his head; as his mouth drooled; as his lips turned blue.
Six years ago today, we unknowingly began a journey that has lead us through a number of medications, a surplus of specialists, highways of misdiagnosis, infusions and finally landed us together in a surgical room, allowing a hemispherectomy to be performed on our oldest son.
I think of all that we’ve gone through, all that J has endured and conquered. Through it all, he has trusted us, relied on us, come through happy, with his light shining through. He has touched so many, and taught and enlightened so many more.
As much as I wish this was a journey he never had to take, I do find myself in moments where I understand the need for his journey; the lessons from his journey… times when I find myself appreciating how far he’s come and all that he’s endured so that I, or anyone else who hears his story, can understand just how precious a moment like this is.
On this day, 6 years to the day of his first seizure, after many years of aggressiveness (which continues in a slightly lesser level now), perseverations that have no boundaries, regressions, pervasive damage cognitively and behaviorally, delays in speech and motor movements, the inability to interact as his peers do, as he would wish… after all this time, I am grateful to hear this sound, on this day…
The sound is of J and his siblings (who too, have endured so much), playing. Our three children playing together… getting along… on the trampoline. Living. Laughing. Loving.
It is at this moment that I find an appreciation that can be lost on so many, a moment overlooked by those who have not traveled a journey such as ours.
And it is for this moment, 6 years later, that I am grateful.