Coming to grips

It's been an emotional sort of week. The Parents leaving has been a catalyst for a downward spiral into a deep dark hole that I've been struggling to get out of. I think the hole was always there, just waiting for me to fall into, but The Parents being around had been a distraction. I'd been so busy showing them  around my new home, watching them play and bond with Liam, that I was able to, for awhile at least, forget everything we're currently facing, forget how our lives have just been turned upside down.

I guess it takes more than four weeks to get over the life-changing news that your precious baby has a rare genetic disease. So rare that half the doctors we've spoken to here do not know what it is. That he will struggle with things that comes naturally to other children. That his IQ will be around the 60 mark, at best. That he may be bullied and teased and treated unkindly because he's different. 

I thought I'd accepted it. I thought I was coping and doing well. And then I find myself crying into my pillow in the middle of the night, muffling my sobs and hurting so much I can't breathe. And I realize I'm not okay. I'm struggling. I'm angry. I'm hurt. I'm lost. This was not how I thought motherhood would turn out. This was not what I'd envision for my life. 

And it's hard. It's so, so hard - because I'm selfish and I want a normal life with normal kids who have normal dreams. Am I a bad person for saying that out loud? I want to be able to send my child to school knowing he'll be okay. I want to know he'll have friends as he grows up. That he won't be bullied because of how he looks or speak. That he won't get hurt. I want him to run and love and have adventures and live a big, big life. 

What I DON'T want is for him to be poked and prodded with needles every month. I don't want to take him for therapy every week just to learn to eat, speak, crawl, walk. I don't want to worry over everything, wondering what is normal baby behavior and what is part of Williams. I don't want to have to tell him not to be too friendly when he grows older, because people may not be friendly in return. I love my son with every inch of me and a part of me feels like I've failed him, because he wasn't made perfectly inside of me. It is silly I know. It is not my fault, I know that too. But how I feel is not silly. It's very, very real. And it hurts like a bitch.

Liam turns one in three weeks, and already has been through more in his one year of life than some people have in a lifetime. It's not fair. It really isn't. The week preceding his birthday is packed back to back with doctors appointment and I almost don't want to have a celebration for his birthday. It's too much. I'm hurting too badly. I don't have any space in my heart to care about cakes and presents and treats. Except that I know I must, I must. I can't let his diagnosis of Williams Syndrome take over our life. I refuse to. I refuse to be so filled with such rage and anger at this world and at the hand we've been dealt that I do not celebrate how much my little boy has grown in one year. And he has. We all have. As a family we've been through hell and back and hell again. And still we're here. We're together. We're holding on.

And I have to celebrate my boy simply because through all of this, he is my strength. He is not angry. He does not rage. He does not have regrets. He is simply him. And 'him' is so, so pure. He has no judgements, no pre-conceived notions, no expectations to live up to, no sense of failure. Not yet. 

My happy, beautiful boy is a ray of light whose current goal in life is to smile at everybody he sees, whether he's met them before or not. He smiles and he smiles, and he waits for them to notice him and smile back. And then he does this happy little bouncy dance because his life is complete. Because a stranger walking down the street, or at the checkout counter/supermarket/cafe/restaurant/clinic, noticed him and gave him a smile. 

My son has an inner, untarnished, big bright light that lights up the room - just by being who he is. And even as I'm sitting in the corner of my couch sobbing quietly to myself, feeling the lowest of the low, shutting myself out from the world, he is trying to make me smile. He is telling me he is okay. He is doing his happy bounce, babbling to himself, and grinning widely at me whenever I look at him. There's no need to cry mum. But I do. I can't stop. Because today even his smiling face leaves me fearing for him. He's cute and small and cuddly now. But he won't always be. What if one day he smiles at someone who ends up hurting him? How do I protect him from a world I know to be unfair and often unkind?

Tomorrow I will wake up and the world may seem a better place. I have a loving husband and a beautiful son after all, everyone tells me. Count your blessings, they say. And most days I do just that. Most days I hide my fears and disconnect myself from my pain because my family needs me to be strong. They need me to be okay. Most days I am just a mother trying to bring up her child.

But today everything hurts...

Until my baby boy smiles.