Life, as we know it.

On Friday night we got the call. The call that we've been waiting for since October of last year really. When Liam was at Heidelberg hospital for his catheterization procedure, one of the outcomes of the procedure was the discovery of him possibly having a genetic condition known as Williams Syndrome, a rare neurodevelopment disorder that affects 1 in 10000 babies and will affect their growth physically and developmentally.

My heart sank when I heard the news, but the truth was it wasn't the first time we'd heard of the condition. When he was only a month old, I'd stumbled upon it when researching his various heart defects. Valvular Pulmonary Stenosis. Ventricular Septal Defect. They were common symptoms of children with Williams Syndrome. And then there was the reflux and digestive issues he's had since birth. The low birth weight and slow weight gain. The fact that he didn't smile till he was six months old. And even now at ten months, still doesn't laugh. The low muscle tone and facial features. Deep inside my heart I think I always knew. I didn't want to know, but I knew.

Just before Christmas we sent him for genetic testing. We'd decided that whatever it was, we had to know for sure. It will help us to better prepare for the future, and for what our son may need. But there's really no preparation for the pain you feel when you actually get the call. That the results came back positive, and not in a good way. That your son has just been diagnosed with Williams Syndrome and it will affect the rest of his life. That even though everything now makes perfect sense - why he has such a severe gag reflex he still can't eat solids, why he doesn't laugh, why certain high-pitched sounds makes him cry - there is no cure or prevention, only a lot of work with medical specialists and therapists in our future. This is every parents nightmare.

I've spent the past two days processing what it means for our family to have a child with disabilities. Actually, I started processing it long before we ever had the diagnosis. A part of me feels like I've failed my 10-month-old son whose life will never be what we want for him. He may never go to a normal school, have a normal job, be in an adult relationship, have children of his own, live on his own. He will look different, act different, be different. And the world may love him less for it. It may turn its back on my child whose only fault was being knitted imperfectly in my womb.  He may face teasing and ridicule. And that just about breaks my heart.

Our whole world has been tipped over. AGAIN. And I've questioned why. I've cried, and raged at the gods who keeps testing us. WHY us? Haven't we been through enough with battling cancer and a lifelong thyroid condition? Haven't we paid our dues with Liam's heart defects? I know families who've gone through a lifetime never facing a more serious medical issue than the common cold. I know people with multiple children who's never had to step into a hospital. Heavens forgive me but why couldn't it be one of them? Why this? Why now? WHY US? 

And I really hate people who say things like "God only gives 'special' children to 'special parents who can handle it". Because this is nothing any parent should have to handle. And truth be told, I no longer believe in a God that allows bad things to happen over and over again. He has his reasons, they say. You just have to have faith. Well all I can say is bollocks to that. That's just a common answer given when there's no answer to be found. When there's no answer to why children are sick, raped and killed or live a life of misery. Surely they haven't been on earth long enough to have sinned and be deserving of a life of pain. And if it's the sins of the parents they are paying for, then surely this is a God that's unmerciful and unforgiving. A God I no longer believe in, even as my heart prays for understanding. Because I can see NO reason for my sweet baby who has done nothing wrong to go through a life that will be filled with struggles.

But religion and faith aside, yes, I have a lot to process. I have a lot of anger and sadness to deal with. BUT, at the same time, nothing changes. As a dear friend once said to me, Liam is still Liam. He is still my loving, sweet, curious little boy who lights up a room with his smile. He will continue to grow and learn to the best of his abilities and with all the support we can give him. Disability or not, he will continue to need love, family, laughter, friendship, acceptance, and adventure in his life. We will have birthdays, Christmasses, play-dates, FUN, as well as days which will be completely nightmares - like any other family. 

He will still have a brother or sister in the hopefully near future and a dog to love and grow up with (because all children should have such faithful companions). One day we will make our way back to the ocean which is our home, and he will run on the sand, live amidst the crashing of waves and breathe in the salty, fresh ocean breeze everyday. We will still be a family, and as a family we will be there for each other, and somehow navigate our way through this crazy, senseless, beautiful world that has no rhyme or reason - only precious moments, which you hold on to with all your heart and soul so that you can still find a way to breathe when the world is crashing down on you. 

Everything changes, yet nothing does. He has Williams Syndrome. We know that now. But he is also the same sweet, unique, frustrating, amazing, and beautiful boy he is before we got the call that changed the rest of our lives. 

And life goes on.