Bean’s World

We are having one of those beaming-sunshine fall days in Toronto, when the light comes through the changing leaves, the wind is still a little bit warm and it’s probably the last time you can wear just a T-shirt outside for the next six months. Today was the perfect day to head to the park, something which we have rarely done lately.  Naturally I would love to take Bean there every day but there are days when his health necessitates that we stick close to home and avoid germy sandboxes.  

We headed up to our local playground this morning, met up with our friends Karen and baby Keira, and had a good romp around the park.  Gavin pointed out the leaf-strewn wading pool, which somehow he still remembers going to from when he was 11 months old. I told him that now that winter is coming we’ll have to wait until next year to go swimming in the pool and he seemed to understand that. Gav plunked himself down in the sandbox with his bucket and shovels and spent a good while happily playing.  He became a bit upset when another kid took his shovel.  His lack of exposure to other kids has made it hard for him to understand why kids do things like take your shovel.  I mean, adults don’t just walk up and take your shovel. Most other kids would probably yank it back and start a tug-of-war, but he gets whiny and gives me this look of utter desolation. I have to simply believe that there will be a time when Gavin is able to get  into a sandbox fight with another kid.  I welcome it!

A lot of people have asked me if Gavin understands that he’s sick or that he’s lost his hair.  The truth is, I’m not sure how much of what is going on Gavin comprehends.  I’ve never said the c-word to him and probably won’t for a long time.  He knows that we occasionally have to go and stay at the hospital, but we try to make it fun and act like it’s just another place we normally go.  I always say, “We’re going to see our friends at the hospital, and we can meet Bubby there and play with the toys.”  It gives him something to look forward to and takes his mind off of whatever it is that’s bothering him.  He understands that he is not like other children his age and that there are limitations on what he can and can’t do. He has a much better comprehension of that than most children – he is very cautious with himself and follows instruction well.  He has had me ask him so many times if something hurts or is wrong that he has started to say with a long-suffering sigh, “No, mama.  Fine!”

This afternoon Karen brought us a lovely lunch-feast which we shared with Auntie Loz, and Gavin was keen to have a few bites.  (Cheese mostly) I’ve been trying over the last couple of weeks to cut back on formula feeds a bit and get some real food into him while he can still tolerate it.  I know that when he begins high-dose chemo he won’t be able to eat anything at all. I’ve been told that most of them simply don’t eat for a couple of months straight but subsist on TPN. He’ll also most likely have his NG tube out and will receive the TPN through his line.  We’ve had quite a bit of success with certain food over the last week or so, most notably, pasta! We are really supposed to be going slow with the textures that we give him, but he’s truly uninterested in eating mush and longs for cheese.

I thought it wouldn’t hurt to try a few different things and he understands that he needs to chew very carefully and wash things down with thickened water. He understands the difference between formula feeds and real food and often rebels against being attached to the pole for his feeds.  Last week, we went to our local health food store, Evergreen, and picked up a box of Annie’s pasta.  (Think organic KD) He was so excited he cradled the box all the way home, saying, “Pot! Cook!”  When we got home he insisted on making it straight away, and to my amazement was able to eat quite a big portion of it, thereby proving that his swallow has come SUCH a long way.  It was incredibly exciting! He’s also eaten raspberries, lasagna, rice, various soups, cream of wheat and oatmeal.  I cannot wait for the day when his tube is out and he can resume eating normally and whatever his heart desires. (Within reason, of course!)

While I happen to think of it I should probably also mention that Gavin has come a long way as well in terms of speech. He is talking a lot and attempts to repeat a lot of words after us, although to be honest I think we’re the only ones who understand him most of the time.  He is only now starting to string two words together to make little sentences but is coming along. His pronunciation tends to be a bit off and he has a habit of transposing consonant sounds. (He calls tape “pete” and has referred to a cup as a “puck.”) A lot of these issues are probably just run-of-the-mill speech problems and will resolve over time.  He stubbornly refers to certain things by a completely different name, he calles his doll Ruby “Weeoh,” for mysterious reasons of his own.  He is also missing extremely basic vocabulary words like “table” or “banana,” but can say meds, heparin, flush, and gauze.  He uses sound effects to indicate what he wants or means, although I’m trying to get him away from that when it comes to making monkey noises to show he wants his Monkey.  He is clearly such a hard worker and tries his very best to communicate, and I always try to encourage him to use words and make his pronunciation better, but he gets annoyed with me and shouts “NO!” if I try too much.  I guess there is a fine line between being a good parent and a pain in the ass.

I have to admit to myself that he is starting to look really sick now.  He has lost almost all of his hair and most of his eyelashes.  His eyelashes were the envy of ladies everywhere, including me.  I remember when Gavin was born, he didn’t have any eyelashes, which worried me.  I distinctly recollect googling “Baby doesn’t have eyelashes” to reassure myself that he would soon grow some.  Eventually he did, and they were long and gorgeous.  They will come back some day, as will his hair, which will hopefully cover up his scars, providing him with some small measure of anonymity.

He still smiles such a beautiful smile (except in photos) and has started to sing a lot lately – nothing comprehensible but rather cute all the same. He is still incredibly playful, and willful at times, and always wants to be my little helper.  Often I feel that I am living under the rule of a benevolent dictator who decides everything from how much sugar I have in my coffee to which clothes I am permitted to wear that day.  Sometimes I put my foot down and lose my temper with him, which I suppose it only natural, but am totally wracked with guilt for doing so.  On the other hand, I don’t want to let him get away with absolutely everything, because I want him to still be a likeable person for the rest of his life!