Flashback

I'm going back in time with this blog. I've been thinking back to the time that Joel was first diagnosed, and we thought he'd be "less severe" in his illness. I wanted to share about that time.
It was very different from now in many ways. For one thing, I thought about Joel's death a lot less, of course. Everything was still new though, so in that way I guess it was more overwhelming and maybe felt more horrible? Joel was a lot more demanding in some of his needs (as was Caeden!) which made it a lot more difficult to manage everything. But I still did have all sorts of thoughts, feelings, and ideas bouncing around in my head to deal with.

That time period I spent a lot more time grieving what Joel would not "have" in this life and a lot less time grieving his eventual death, though of course both then and now I grieve both. But back then, I believed that my boy was going to learn to sit. I thought he'd learn to walk too, at least for awhile. And I thought he'd get his food orally, not through a tube. I looked ahead to many, many years of caring for him.

It was not a pretty picture. I'm just going to be honest here. This is how my mind thought at the time. Maybe you are a better person, maybe you would not have seen or felt it like that. But I did.

I was dismayed. How was I going to manage it all? How would the years play out? How would we ever have a "life" again? As I aged and things got harder, Joel would slowly decline. What if he lived to 20 or beyond, as some of the other children I know have. I'd be 58 when he reach 20.

Look, I realize that life isn't exactly over by then, but when I thought of being upwards of 55 and diapering, dressing, feeding, pushing a wheelchair (never mind transferring in and out or bathing) I was seriously overwhelmed by it. The thought of trying to manage all the difficult health issues for so many years gave me an anxious feeling in the pit of my stomach. My empty nest syndrome, when it finally came, would have a whole different level, because now my son would be dead.

It was a bleak picture. Joel "limiting" our lives more and more as we aged, finally leaving us be rift, completely devastated when he died. And we'd be coping with this grief while our last years of good health slipped away.

Maybe that sounds a bit mellow dramatic, but this is how the mind works when you have been hit by some particularly terrible news. And that is really what I thought our reality would be like.

I was grieving one sort of loss, without really being able to grieve the other way things could play out. I think maybe that was impossible. I don't think I could have really "felt" what both extremes could be like. So I grieved the one I thought was most likely.

Then it slowly changed. Joel's lifespan seemed to gradually decrease before my very eyes.

Now I never think about how hard it would be to diaper and bathe a 15 year old. That future has closed to me.

Now I long for other things. Now I long to see him sit. Now I wish he'd just be able to grab some toys. And now I worry, not about how I will cope with Joel's needs while he's alive, but how I will cope with him being gone. Ah, the way of life.

I don't really feel "bad" about grieving either of these things. Either future was grief-worthy. But now, if I could choose, I for sure would choose to keep Joel around and able to do even the limited things he might have achieved. When you love someone you'll make a lot of sacrifices to keep them with you, no matter how daunting the future looks.

This morning I did something I said that I don't do. I dreamt of Joel. It was a sad dream. I'm not going into all the detail, but in my dream I wept profusely over one deep sorrow. What was it? Joel could not hold up his head. In my dream I wept and wept because I just wanted Joel to be able to hold up his own head for part of his life. Then I could carry him under his armpits. I could lift him easily out of the bath. I could sit him on my knee in a different manner. I could carry him over my shoulder and he'd be able to look around. No, he can't see, but it was a dream, ok?

I guess I am sad about that, after all. I hadn't really thought of it before. Too much other stuff to be sad about, I guess.

I don't know why it was important to share all that with you. Maybe it was for the mother whose child with a PBD is going to be around into their teens or 20s. Maybe I wanted her to know that I think it is ok to find that overwhelming and difficult, and terribly sad. Since I have previously written about how I am jealous of such moms. I am. What a paradox. I am jealous and I'd "trade places" in a flash, at the same time I would again be horrified at the thought of seeing my son slowly decline and lose so much while I had less and less energy and health to manage it all.

There was a time, many years ago, when I was in a dark and difficult place. I felt that I had nothing. No job, no husband or boyfriend, no purpose... it was just a dark and difficult place. I remember clearly singing in church while I mused on it all and thinking "I've hit the bottom, and God is still here, underneath me." I felt that underneath my "life" I could hear a song playing, a "bass line" that never went away even when things were so low. It seemed to me I had nothing in life, nothing but God. And in that moment, God was enough.

There at the bottom, and I could feel God there, the bottom holding me up. Maybe that is what Jesus meant in his story about the builder who "built" his life on the rock. Even when the storms came, that rock was there when all else was swept away.

Whatever the future holds, however scary it is, no matter how dark it gets or how much I wish I could escape from the reality I face, I know that God is even at the very, very bottom.