As of a couple of days ago. Four years old. I don't really know what to say, but I felt I should say something, given that it's his birthday! Let me see....
Well... I guess I can definitely say that I didn't expect to be in this 'place' at this time. By four, I expected (or at least hoped) that he would be speaking and that he would be toilet trained. How very naive of me. Neither of those things has happened, not for lack of working at it though. They just haven't happened. Now it seems like five is just around the corner, and six and seven, and he may not be speaking then either. Sometimes, when I think about what life has brought us, I can't help imagining - just for a guilty minute or two - how different life would be if Little Man was normal.
He would dress himself in the morning, maybe with a little bit of help. I would not have to be changing his nappies anymore. He would be coming home from kinder regaling me with stories of his day - or maybe it's just girls who do that? lol :). He would tell me what his favourite food is, sing along with his favourite songs, talk about his favourite TV shows. He might roar like a dinosaur, or hoon around like a race-car driver. He wouldn't pause at the doorway for 3 minutes every time we try to leave the house. He wouldn't have to have the TV and all music switched off for every meal. He wouldn't scream at his sisters so much. (Or maybe he would, but it wouldn't be for things that don't make sense to them). I - we as a family - would have so much more freedom to live. So many things would be so different.
I don't regret my son. I do wish he wasn't autistic - it's my right to feel that way and I should not be judged for that - but I also love and adore him the way he is. I just wonder and daydream sometimes, that's all.
Here is the facebook status I posted on his birthday:
Four years ago today, I held a little man in my arms. The scent of sweet breath from a brand spanking new set of lungs, a bouncing baby boy - 4.2 kilos! My heart was stolen all over again. Who knew the amazing things he would bring into our lives. Happy birthday Little Man. Mummy loves Erik xx ♥ ♥ xx
Who knew. Who knew. I can't believe how quickly the years have gone by. I feel that I didn't have time to enjoy him when he was smaller, because I was so busy trying to adjust to the shock of his diagnosis and organise resources and help. But I also think it is just the way things are when you have more than two children. Time becomes more thinly spread among them all, and they all grow up while your attention is directed at the other ones.
Or maybe it's just that I have become stuck on a moment... waiting for his words to come. Waiting for him meet the milestones he should have met ages ago. I'm stuck there waiting for him, but he is moving on. Growing up. Without the things he is supposed to be doing. He seems to have forgotten them along the way. Or maybe decided he didn't need or want them in his life. I'm stuck in the moment waiting for him, and he has moved on without waiting for me. Could that be it I wonder?
I don't know... but I don't really think so. Because when I look at my Baby Miss, I feel the same way. She has grown so quickly, I didn't have time to enjoy her!
This is turning out to be a melancholy post. Bittersweet. But I think my life - and I daresay most others' - is filled with bittersweet. I am so happy to celebrate my sons 4th birthday. And so wistful at what might have been. Filled with joy at what is, and filled with longing for what isn't. What a mess I am.
And while I am here wallowing around, my nephew is spending his 30th night in hospital, just struggling to keep a normal heartbeat. My sister has been by his side the whole time. Touch and go. Never really good. Never really bad. Just a limbo of life. Her son might die, any day.... any moment. Or he might spend another year with us. The next seizure might be the one to take him - they are getting stronger and more resistant to medication. His heart might give out for fatigue while his brain ever-so-slowly shuts down. Or he might amazingly hang in there for many more months. Nobody knows. But she is there by his side. Living, sleeping, eating, breathing that hospital. Caring for her son.
When I think of her, I feel like I have no right to be sad for my son. But I am, and I can't help the way I feel. He is my son, and it is my life. But my son is here at home with me, and he lives. Who knows if my darling nephew will live through tonight.
In the end, all I know is that our lives are in God's hands. I don't understand why these things happen to us, but I do know this: The sun rises on the good and the evil. And it rains and storms over the righteous and the wicked both. Life happens to us all. I am just grateful that God walks with me through mine. Walks with my son when I can't get through, walks with my sister in her very private and solitary grief, and walks with my nephew in depths of spirit nobody can ever see. I'm grateful for all that I have, and hopeful for better to come. For me, and for my whole family.