A Day in the Life is a great song by The Beatles. It follows an everyday man, presumably a young John Lennon, through the minutiae of urban life and turns them (it? I’m going with them, Google informs me minutiae is plural) into a story of drama and trial. I often feel like that, where the standard trivialities of daily life could easily be translated into a tale of gravitas. While we have a fair handle on the routine of life, with lissencephaly there is always an undercurrent of uncertainty, a surprise waiting to occur. It’s an interesting, stressful, yet joyful path through life.
Mr. James Luca is transitioning from being a bundle of crying madness to a cute baby with a personality and adorable quirks. This is a welcome transition for anyone within a twenty yard radius of him. He is developing each day, doing more and more at every turn. At four months, he is equal to or has surpassed Jackson on most milestones. I initially thought this would be heartbreaking, but it’s not. It is exciting to see and a new endeavor for us; we are so impressed with every little thing he does. Hopefully it doesn’t go to his ego over time. I think of Luca in spurts…or when the song Ho Hey by the Lumineers comes on. It was playing in the delivery room when he was born. But I only think about Luca in spurts, as I have the general sense that he will be fine.
The focus is still on Jackson, at least in terms of where my thoughts go. He is, undeniably, the cutest person on the face of the planet. Undeniably and without question. He faces so much, all with a smile on his face. He does not know the struggles he has or will face. My heart aches for Jackson. He has to go through things that no one should have to go through and certainly not a small child. He gets ill easily, he pukes a lot, he has a consistent cough. His feet are slightly misshapen from non-use. It is not that easy to see your three-year old wake up in dried vomit because he can’t ask for help or move away from it. Even the insignificant things can be significant. What if you had a bug bite but couldn’t scratch it? Or a headache and couldn’t tell anyone about it? For most of us, it would add up to a mountain of frustration, a reason to be forever surly. But not Jackson. He faces it all with the most endearing demeanor imaginable. I know that whatever this life holds for me, for us, it will never be as stressful or rewarding as caring for Jackson. It feels like the ultimate proving ground, and I think we are doing okay.
A day in the life for us is not so simple as that of young Beatle. Medicine and crying, meetings and conference calls, smiles and laughter may well be the next great ballad. Like the renowned German thinker G. Goertzen once said, “With children, the days are long, but the years are quick.” So true, no matter how incredibly long they are, the years are always too quick.