Right now

So, we've had a few days to come to grips with our new reality. Our beautiful, beautiful boy, is going to need lifelong care. Already, the appointments with medical professionals are piling up. Doctors, pediatricians, genetic counseling, cardiologists. And after that, possibly speech and physical therapy.  Behavioral therapy. Feeding clinics. Eye and ear specialists. Kidney specialists.

His every move will be watched over. Scrutinized. Is he not taking solids because most babies still struggle with it until they're a year old? Or is it because of Williams Syndrome? Is he having difficulty sleeping because of a growth spurt? Or is it because of Williams Syndrome? Is he not walking because some children don't walk until they're two? Or is it because of Williams Syndrome?

There are questions. So many, many questions without any answers. Because the thing about this condition, is not only that it is so rare, but that it is different for every child. There are so many symptoms and they all vary. Some children have heart diseases. Some don't. Some continue gagging throughout their childhood, needing feeding tubes to help them gain weight. Some guzzle everything in sight. Some can speak four languages but struggle to write their own name. Others can play a concerto but can't add 2+2. Where does our baby fall within this spectrum? How do we cope with a future that's so uncertain? How do we prepare ourselves for what no one else can foresee? 

And yet, we must. We must prepare, we must cope, we must keep moving on - because the alternative is falling into a deep, dark hole and never coming out again, and I refuse to let this take over our lives. I refuse to cringe whenever I hear the words Williams Syndrome spoken out-loud. I refuse to cower and hide, to feel embarrassed or ashamed. I refuse to live my life in anger or denial. But I'm still a long way towards acceptance. 

When everything you thought you knew or understood about life is suddenly taken away, you have to form new believes, new perspectives, new hope. And my entire life perspective has suddenly changed. But a friend said it right. My baby is perfect. It is the people around him that aren't. Because we live in a society that has no room for imperfections, and very certain ideals of what a good life is and should be. And a very rigid definition of fulfillment, success and happiness. 

And even while I'm grieving for the life I'd always envisioned for myself, a society-approved life which has no room for any sort of 'syndrome' or disabilities, even as I mourn the dream of the perfect baby I thought I'd have, who'd grow up to achieve the kind of successes, fulfillment and happiness defined by the world around me, my baby has gone ahead and broken every box I'd pigeonholed him into before he was even born. His existence has made me question my worldview, my selfishness, my need for acceptance by a world who should love my boy for who he is and not who they want him to be. I should love my boy for who he is, and not who I want him to be. 

And I do. Oh I do. 

With every breath I have, I love my son. And when he rests his head on my chest, when he turns to me with a smile because he's just discovered something new, when he's so determined to reach a toy just out of his grasp that he topples over in his chair, when he trusts me to hold him, to protect him, to love him, I am like any other mother who's so, so in love with her child. And that's all that matters.

This isn't the life I thought I would have. But it is the life meant for me. And I won't waste this one, crazy, beautiful, unique life I have feeling sorry for myself or asking why. My baby isn't broken. He's beautiful. And our story did not come to an end. It merely turned a chapter. 

This is just the beginning of the road we now find ourselves on. And I don't kid myself. There will be tough times ahead. There will be many more tears. There will be days when I will think that sinking into that dark hole must be easier than feeling the pain you feel when your child is hurt. But there will also be so much love. So many more good times and memories to be had. So much laughter. And so much LIFE. 

Our journey as a family may be different, unconventional, but it is still a journey, and right now, I think we're going to be okay.