Here we are again, Christmas Eve, how does it come around so fast??
Things are very different in our house this Christmas, the biggest being that tomorrow morning our boy will eat Christmas bread with us for breakfast and he will nibble on pork and potatoes, pie and cake. One month of our new life, our tube free life, and we are getting to know a completely different child.
The growth is slow, but there is growth. His favourite foods don’t make up a balanced diet, but he has favourite foods, so we don’t care. There is no vomit. What goes in, stays in.
There is so much goodness. So much happiness. So much freedom.
Tonight Santa is coming and he’s bringing spoons and a drink bottle and chocolates. A month ago Santa wouldn’t have bothered with all of that. What a waste, he would have said, that child doesn’t eat.
The other morning I said “hurry up Oliver and eat your toast”, then I sat on the kitchen floor and cried because Oliver was eating toast (with butter and Vegemite, of course!).
Small things that other people take for granted are huge in our house, and in the houses of so many preemies. On Thursday he learnt to suck from a straw. He’s 19 months old, but having never used a bottle he didn’t have the suck/drink rhythm. Granted it has to be a squeezable container as I need to squeeze the first mouthful for him, but once it starts he’s off (we had a little hand clapping ecstatic party after that first drink).
So, so many joyous wonderful things that make this Christmas so much happier than the last. I know this is the same for so many families.
So why do we feel so sad?
I spoke with a friend recently about this, when things are ‘good’ yet you feel so low, and you feel lower because you feel bad that you are not just happy for all the goodness.
But then another friend told me that it never stops, it never gets easier, it will always be sad.
So somehow it feels okay to be sad when you’re surrounded by happiness.
I’m sad because there’s a Santa stocking missing. Because when Oliver crawls on the floor to his toys he’s going to show them to me, not to his brother. Because when he wakes from his sleep he cries for us instead of chatting to his twin.
And I’m sad because now that he doesn’t have a tube we don’t talk about Charlie as much.
Olives tube was a physical, visual trigger for people to ask about his story. It made people stop and look and wonder, and on the days when I felt brave it helped me to tell their story.
Now, although he is little, Oliver just looks like a kid, same as every other kid. Don’t get me wrong, I’m happy about this, I don’t want him tube fed. But I do want to explain why I miss it.
I miss having it there to tell me it’s okay that you still want to cry all the time. I miss it telling me that it’s okay that you don’t always feel happy around other kids. I miss it telling me that it’s okay that you don’t go to this or that event.
And I miss that it started the conversation for me, so that I didn’t have to do it myself.
It’s up to me now, to make Charlie real and to tell the story of both my children. I don’t think I’m ready yet but I hope that as we roll over into a new year that I will be able to learn to start the conversation myself.