Wednesday, April 2, 2008

Castaways on Cancer Island

More botox for Ty and still none for me - they are so stingy with that stuff! He had his port flushed (4 pokes in one day and he didn't complain a bit). He also didn't experience any nausea - and that was wonderful for both of us.

In other news, the baby is still coughing (and puking due to coughing so hard and long), but the doctor's office has assured me that she's not contagious now that she's finished her antibiotics. Strangely, I remain unconvinced - if she's still coughing, aren't those particles of contagion being flung about in her immediate vicinity?

On Sunday, two women came and presented to our church/ward about including people with disabilities. They were from the state school for the deaf and blind - we have 4 disabled males in our neighborhood and all but one have lived here from the beginning. Two of them are considered to be deafblind (although they are quite different in their abilities and in their deafblindness - they both, however, have some comprehension of spoken speech). As mothers of children with disabilities, it has been harder to watch our boys grow older and less included in the youth activities, but we realize it has also become more challenging to include them.

I don't know the answer to helping these boys become a part of their church family. He had a helluva year last year and I don't know how it could've been much different, but the other boys, especially the one turning 12 soon, could be more actively included. I think of the mother of that 12 year old, of how capable he is and yet how socially vulnerable he is. Junior high is hard enough for "normal" kids, I can't imagine how it will be for him.

I do know that our neighborhood has an opportunity before them to stretch, to put themselves out of their comfort zone and be a support system for that boy and his family - I hope we do it.

During that presentation, I silently cried my eyes out. I didn't think I would, but the thought kept coming to me that if Ty had been one of the other boys in the neighborhood going through the same struggle with a tumor on the rampage, the response would have been different. There would have been visits from friends, from adult youth leaders, neighbors even. It breaks my heart to think that people didn't know what to say to him and so they said nothing. They didn't know what to say to us, and so they said nothing. And so for a year and a half, we hung on by our fingernails.

Don't get me wrong, there were numerous anonymous acts of kindness and service performed for our family. Bits of I don't know what to do, so here is ____ (a plate of goodies, money!, some christmas cheer) were left on our doorstep. A little part of me is sad that I hadn't done my part to make his impact felt more keenly in our church family. I know how great and wonderful my son is, but I don't know that I've helped others to see that, to feel that. So, when he went missing from life for about a year and a half - it seemed no one knew he was gone. It felt that way for me too - I don't think I've made an impact in my neighborhood, at least not one that could be felt when I went missing too. It was a sort of a Dickensian moment for me during that presentation.

The realization hit me that it's not enough to be his mom, to serve him - there are still other people out there. Instead of turning inward and focusing more on my family, I suppose I should've maintained some aspect of serving others outside the microcosm of our home - it would have been soul-feeding and may have kept me grounded in the larger perspective of life.

I used to think of myself as a social person. I genuinely enjoy the company of others and hearing about the joy in their lives (sometimes other people's joy can be a lifeline), but people tend to feel guilty about their relative good fortune and that means they tend to withdraw as well. I don't really feel dramatic in saying that this last year has been a deserted island for us; we have been cancer castaways who've suddenly found a life raft and been plunked back down into civilization.

In our absence, things have changed; our children have felt it too. After adapting ourselves to life on the "island" and necessarily eating with our fingers for so long, suddenly we've a plethora of silverware from which to choose. The weight of a spoon or a fork is awkward in our hand, and it feels easier to keep using our fingers. Returning to a more social way of life is just as foreign.

But this time, I had better make it count for something.


Am'n2deep said...

Such a great post. You know, although I ask the dang question to others often, I've really come to squirm at that question, "How are you?" If things are good, I feel wierd to throw it out there, and if they're not, well, you know. The truth is I REALLY wish we could just be totally honest with each other about our triumphs as well as our pain. It doesn't make you more brave or strong to suffer in silence and it shouldn't make you disconnected if life is great for you...sigh.

Anyway, I really wish you well in your transition back to "normal" life, whatever that is. :)

And by the way, love your taste in music!

Cocoa said...

Reading your blog and getting to know your family this past year has made me more aware of those in our ward and area that need to feel loved and acknowledged. My husband is actually better at asking the type of questions that draw people out so they don't just answer the typical, "Oh I'm fine." It's really opened my eyes. We are all the same. Really! It's just that with some of us our troubles and trials are very noticeable.

I wish you all the best is getting back into "normal" (ha, is there really a normal?) life.

I too love your taste in music.

Heffalump said...

Sometimes I think we are all our own seperate little islands in the sea of life, and we forget to build bridges past the ones that lead to the islands of our immediate families. I know I am particularly bad at bridging those gaps between myself and others. I like the solitude of being my own island, yet I get lonely.

Corrie said...

We call it getting back to 'usual' because normal is so relative.

It's interesting to make the transition from crisis and survival mode back to ho-hum everyday living. I am so grateful to be back in the everyday, but I still have adrenaline withdrawal (the garden is going to come in handy for all the extra energy)

claire said...

I always visit your blog and come away a better person...
I so appreciate your thoughts, your honesty, your strength, and your music!
I have felt weary lately at trying to try so hard to help people want to be with boggles my mind that people are so full of "perception" issues and fear. I so appreciate the child that asks a few simple questions, then is happy to play with Monte at this own level. If I am feeling weary now, I can't imagine how you've lasted so much longer than we have and with such severe struggles. You are my hero!
Hang in there...

Mrs. Organic said...

claire - I think it has gotten harder for me the oleder he has gotten and the greater the difference there is between him and his peers. There will likely not be any dating, no driving, but why is there not any hanging out with friends? I think it's time for me to go make some 'lemonade'