This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Saturday, December 11, 2010

More Mommy Guilt

Here I am, sharing yet another episode of "Mother Guilt" with you. Before I admit all about it to you, let me say that you might as well not waste your breath telling me I'm a great mother.

First of all, when it comes to the truth about the crazy stuff I'm going to share, I'm the first to be telling myself it's nuts to think this way. I just can't help the thoughts that try and take up residence in my mind, though I try not to let them make a comfy home there.

Second of all, I know very well that I'm also not mother of the year. I know the truth about that a little too well, for you to make me believe that I'm "great." I do ok. I love both my boys, and sometimes I'm even unselfish towards them. Sometimes. I don't think Caeden is going to have too many scars from my methods or behaviors, but I also can clearly see some places that need some work in my parenting methods. True enough.

But this episode of "Mommy Guilt" is not to do with Caeden. It's about Joel.

I don't even know where to start on this one. The fact that these thoughts strike me as pretty nutty does nothing to stop me from thinking they sound quite plausible at the same time. Only a person who has struggled with real sanity issues would likely understand this seeming contradiction.

And even worse, occasionally I wonder if there are any other people out there who think similar things about me. Do they think or believe the stuff I feel guilty about? This thought only lending credence to my own suppositions.

Because even though I can go over and over the decisions we have made about Joel and see clearly why we did what we did, at the same time...???

Now you are all baffled, wondering what the heck I'm blathering about, so time I told you the details.

You see, Steve and I decided way back last fall that we wouldn't do any more P/T and O/T that was aimed at skills acquisition. We still have our P/T come out and help us look at Joel's positioning and muscle tone and if there are any areas that are concerning that might need a brace or splint or stretches. But back a year ago we decided not to work with Joel to teach him to sit, or reach, etc, etc.

I can go over that decision and see what informed it. Joel often has bouts of irritability. Let's say, to keep it simple, that he really was no longer "interested" in this sort of P/T. There was a good time in his first year where the P/T and O/T would comment on what a hard worker he was... Those days were over for us. He wasn't enjoying it. But the real kicker was just that despite our efforts, Joel had only lost skills. It didn't make sense to make him do something that he no longer enjoyed and that wasn't "helping."

But last winter Joel still very much enjoyed getting an after bath massage and stretch and play time on the floor. And so I tried to do that. Now, though, after his bath he just usually wants to get dressed quickly and have a cuddle. He hasn't really played on the floor too much for awhile, though this summer he still lay on a blanket in the grass and enjoyed it as long as someone sat with him. Since September, though, we really have not done much play on a blanket.

Joel used to sit up on my lap a lot more and play. I'd also put him in his tumbleform chair from time to time or even sometimes in his high chair. I like to hold him sitting up quite a bit. Somewhere along the line of the summer, the sitting up position seems to have become uncomfortable for him. He will do it, on my lap, for short periods. If I keep him upright for longer than a few minutes, though, he starts pressing back on my hands, to tell me he wants to lie down. If I ignore this for too long, he cries. I don't ignore it anymore. I'm not sure how much the spinal compressions in his back might be uncomfortable or painful even when he is in this position for too long, and he really has to work harder to breathe that way too. So I let him decide.

I was also feeding him orally this summer. He seemed to like it. I would feed him up to a third of a cup at a time. It made me very happy. But I've just gotten more and more scared about doing it. This fall he seems to be more "chokey" with it, though he's never had an aspiration pneumonia. He also has not seemed to be as interested, when I've tried to offer him food. I haven't really tried very hard since our hospital stay.

And with each and every one of these things, it gnaws at me. If we would have tried harder and longer, would it have helped? I mean, I think, if we hadn't have stopped the P/T, would he have been happier still when he sits? If I would have kept up with the massage and playtime, would he be playing more now? In other words, even if these things couldn't stop the progression of his disease, were they maybe helping to delay it? By quitting, did we make it worse?

Crazy, because after that first regression and bout of irritability and all, we sort of decided that our aim was not to get Joel to sit or walk (which we knew was an impossible goal, anyway) but to make Joel's life as happy as we could for as long as we could. And not one of these decisions have taken any happiness from him. He has remained happy and contented through it all, other than bouts of illness, or that irritability which springs up with no pinpointed cause, though I suspect more and more that it is linked somehow to his bone trouble.

Still, despite our reasoning, despite knowing that we have kept Joel as happy as we can, still, the doubts can linger, like a bad aroma. Did I give up to quickly? Should I keep trying to do these things? Has Joel become "bored?" Did I stop these activities because it was hard for me? Was I too lazy to keep trying? Am I depressed, am I making these decisions due to being depressed? Do I really have what's best for Joel at heart, or am I taking the "easy way?" On and on they can come.

Even sometimes when he's sleeping a lot, then I wonder, "Is he sleeping so much because he is bored? Should I be trying harder to interact with him?" I think this, despite times like yesterday when I was singing to him. For the first 10 minutes or so he smiled and enjoyed it. Then he just listened. Finally, he cried. And I stopped. He quickly snuggled in and fell right to sleep. He was too tired to listen, he just wanted to rest. Despite evidence like this, I still wonder "Have I done enough to keep him stimulated?"

And these are the "biggies." I'm not even going into the guilt I can feel about if I wash his face enough, or if I swab him with toothies enough, or if I've left him in dirty clothes "too long" or not given him enough baths, or not changed his sheets often enough or gone too long before sterilizing his equipment, or didn't turn him enough....?? Never mind, he might be perfectly happy all day long. But these are the thoughts that crawl in through the cracks of my mind and scuttle about when I'm not vigilant about extermination.

I know I'm not totally the only one in this. I remember talking with a friend on this topic about a year ago. She was asking some of the same questions I'm mentioning here. I could clearly see that it was the terrible disease that was robbing her child of the interest in playing, or the ability to do certain things. She was still feeling badly about her role in stimulating him, etc, etc., as if anything she could do would change anything about it. As I know is the case with Joel right now, but it's so much harder to see when it is your own child.

Oh, I know that for kids who are not yet in this "downward spiral" they can learn to do things and be interested and need lots of stimulation. There are kids who are "in that place." As Joel was, waaaaaay back in his first year of life. But he's no longer there. For him, the disease will not let him develop much, instead it's slowly stripping him down. I am hugely thankful for the playful times he does have and the smiles and interest he does show.

Still, doubts will remain, the insidious and blighty buggers. I wish I had a can of mental "Raid." Well, I guess I do, in a sense. Taking some time to talk to God, and singing some worship music can clear em out pretty good. They just have a tendency to reinfestations. Like ants in your lawn. No matter how many nests you clear out, there is another one forming somewhere. Over time, perhaps a long time, they will eventually weaken until they are rarely noticeable. In the meantime, I keep swatting and spraying. Ah, "Mother Guilt."

1 comment:

  1. I have plenty mother guilt myself. I often wonder if Makenzie would have actually smiled at some point had I stimulated her more. I had never been a parent, so I really had no idea what babies liked. But, now, knowing what I know--I feel like crap. I sucked as a parent. Sure, I had tried babbling to her, but when you get no interaction, then it's really easy to just quit. I gave up way too easily--with everything in her short life. But, then again, maybe that is all I was capable of. The grief of it all is a lot to handle and still put on a happy face and keep singing the silly songs. We didn't even consider P/T or O/T. We were just trying to survive--thriving seemed like a fantasy.