Welcome

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..







WARNING:







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!





Monday, November 22, 2010

Nursery School and Mother-Guilt

I have been suffering under a load of mother-guilt. You see, last year Caeden went to nursery school and he loved it there. This year I decided not to enroll him. I wasn't too happy about that choice, but there were many reasons for it.

Here is the list:

-Last year we must have lost a couple of months tuition due to Joel's illness and hospitalizations keeping us from getting there.
-Caeden brought home colds which he then passed on, ultimately to Joel.
-While Caeden loves getting up early and going to nursery school, Joel has a much better day if I just let him sleep until he wakes up himself. He sometimes doesn't do so well with being woken up. And he usually sleeps in until about 9, sometimes even 10.
-Joel starts with water via gt at about 7am (which is the earliest I like to disconnect the CPAP, he can't eat and have CPAP at the same time). Then he gets his formula about 8:30 and that runs until 10-10:30. How to make a half hour run to nursery school in there is beyond me, and I hate to make his schedule run any later as Steve already is up until 11:30 waiting for CPAP time with me. Not to mention pushing back the morning feed would likely mean we were not finished with it by 11am, which is when we'd need to get out the door to pick Caeden up.
-The nursery school (the one we could afford) had no elevator. How to get Joel down the stairs and where to put Joel where he'd be safe from the other 19 crazy kids while I got Caeden out of snow suit and signed in? (last year I could carry him down, stroller and all, this year, not so much)
-I never know if Joel is going to end up irritable or in pain, and I hate having him get into a meltdown state before I can get him comfortable.

And that is not mentioning the small details, like how much work it is to get Joel safely into his snowsuit.

If all this explanation sounds like justification, well, it is. Because I feel terrible about it right now. I thought that after the summer, Caeden would not really realize that nursery school had started and he was "missing out." But he has. Oh how he has! He talks about it all the time with a tremor in his voice. He has "rebelled" several times against Sunday School (which he does like) because he is under the mistaken impression that Sunday School has "replaced" nursery school, even though the two are in no way connected.

And there is no way I can really tell him the reason we don't go to nursery school. How can I tell him that we don't go because it is too hard with his brother? I'd rather bear the resentment myself then pass it on to Joel. He can't even defend himself. So I just say that we are not going this year, but we will go next year.

But I'm starting to feel unbearably bad about it all. Can anyone make you feel more guilty or horrible than your own child?

So, I think I'm going to try phoning the nursery school my friend uses. It costs a lot more, but I think it runs an afternoon program. That doesn't make the feeding schedule easier, because then lunch with conflict with it (since Joel takes about 2 hours to eat). But at least I wouldn't have to wake Joel up. And then I'm going to ask if they would consider doing "drop ins" for Caeden, so that we don't have to shell out for a full month when we might only get there a few times. At least the Tuesday afternoons that Melanie is here, it would be easy to get there.

Of course, I don't know if that would really satisfy Caeden. He wouldn't see his friend from the other school, and he still talks about them. But maybe I'd feel better that way. We'll see.

In the meantime, I am very grateful for all my friends who have arranged play dates for Caeden and picked him up to come over to play. Even taken him to the library for story time with their own children. Thanks. It is much appreciated.

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