Eye Opener

This last Thursday we had the kiddos and M had a band concert. Before the concert we went to McDonald. N had a letter jacket on that he recently got. It’s a normal letterman’s jacket like you would picture in your head; wool body and leather sleeves with patches. The jacket was so heavy though that N couldn’t feed himself.

N has muscular dystrophy. It’s a degenerative muscle disease that put him in a wheel chair years before I met him. He’s in a motorized chair and plays power soccer. His form of MD is harsh, but he has a light variation of it. A Friend of his on power soccer has a much more severe form and he cannot feed himself, can’t move his head, and has circulation issues. Friend can talk and he can still move himself in his chair. The boys are about the same age so it is interesting (I know it is a horrid word to use) to see how Friend is progressing compared to N. Seeing what we have to “look forward to” in the future.

So seeing N struggle to get the burger to his mouth and fail was really, really hard.  M fed him his burger and fries. Thankfully he’s not a real big eater and is a smallish kid. Soon we will be having to feed him all of his meals. I wonder if he'll let R or I do it? Or will he demand that A or M be the ones to feed him? I wonder how hard it will be to let go of his pride?

But what it did more than anything was remind us that N won’t be around forever.  He won’t be around for the girl’s weddings or to see their babies. He won’t get married or have children of his own. He should be around for their high school graduation, but nothing is ever certain. At that point he’ll be 23, almost 24. That will be getting close to the end. I’ve heard 25 thrown out a lot about his age at death (give or take of course.)  So he could (and will) miss a lot.

I’m not sure how R will handle it all. I know he’ll have regrets about how he and N are not close and how short tempered he was with N. No amount of reminding him how frustrating N was will help. So how do I convince him that he needs to take this time and really bond with his son. Not for N’s sake (because he doesn’t care) but for his own? So that when N passes, R will know he did everything he could? That he was the BEST Dad he could possibly be to this difficult child?

Or will N die leaving R feeling like he should have done more. I hope not, but I know R and I know that he will hold on to guilt like this forever.

I wonder, will I cry?