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, January 17, 2011

Baby Talk

Most of the time, people don't really get a chance to hear me "baby talk" to Joel. I leave the worst of that for the times we are alone. Maybe I'm worried they will think I'm condescending to Joel. For sure I'd feel foolish if someone else really heard it.

It's very hard to tell how much of an understanding of vocabulary Joel has. Of course. I do get annoyed whenever the audiologist says she wants a sound booth test because the ABR doesn't show his developmental level in understanding sound. I'm pretty sure the sound booth test doesn't really show that either, it just gives the false impression that we know his developmental level.

All the more so, because Joel has days, and then he has DAYS. You just never know. I used to be so frustrated that every time I brought Joel in for an eye appointment, the doctor would shine his uber bright light straight into Joel's eyes, and NOTHING. Zero. Zip. Yet at home, I'd see Joel's eyes narrow against sunlight, and sometime he even seemed discomforted by it. Now, over time, I have come to see more and more visual response from Joel. At times, it even seems he has been staring at my face, but when I make eye contact, he looks away. And yes, according to my CNIB O/T, this can be a sign of vision. But it ALL comes and goes. EVERYTHING JOEL comes and goes. The babbling, the "seeing," the reactions to sounds, the playfulness, the alertness, all of it. You just never know.

So I dislike sound booth hearing tests, because I worry they are going to tell me that Joel can't understand what he is hearing properly, but I am pretty sure that he understands a lot more than you can see.

But the other side of it is that his vocabulary is naturally limited. Sure, I could have tried harder to expand it, touching objects to Joel and then telling him what they are. For a long time, I tried to learn baby signing and teach it to him. But as time went on, those efforts faded. Because Joel no longer seems able to reach out for objects on his own. And he mostly doesn't seem too interested in it either. I know this seems strange, it seems strange to me too, and much of it depends on his mood as well, but while he is very interested in people, he seems rather uninterested in anything else.

I just decided that if the word was one we'd actually USE, like: more, water, bath, up, down, mommy, daddy, Caeden, out, car, music, singing, sleepy, bed, etc. then I'd say the word to him and "teach" it to him, never mind the hand signs because now he can't even reach his hands to his mouth anymore. And never mind about tree, or ball, or feather.

Of course, you are supposed to talk to your child a lot to help them learn language. But I just find babbling on and on to Joel difficult and, well, that seems a bit ridiculous to me. I use "regular" talk when we are discussing the details of his life, like bath time. But what do I say to him when I'm holding him for an hour and we are just "'being" together?

So I "baby talk." I baby talk, because baby talk is sing-song-y. It's lilting, like a lullaby, and the language is not the language of trees, animals, everyday items or concepts like hot or cold. The language is the language of love. And the words are love words. They roll off the tongue like a melody.

And the vocabulary is made up of names. Almost completely names. With "love" and "mommy" and a few others scattered in. And here they are, in all their silly splendor. Joel is: Joey, Jo-Jo, schnook-ums, peanut, cuddle-muffin, sweetie pie, duckie, pookie, boo-boo and bo-bo, smoochie, lovabee, baby duck, cookie, coochie-coo, schnook-a -bee, cuddle-bum... you get the idea. Not very dignified, I'm afraid. But Joel doesn't seem to mind. It's all saying the same thing. It's all just "I love you," but all the variations of vowels and consonants just make it like poetry. That's really what it is. Baby talk is "I love you" said in baby poetry. And no matter what an audiologist would say, I KNOW Joel understands it perfectly.

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