Intro - The Boy Who Lived

A brand-new mom, exhausted and glowing; a sleeping, content, squishy newborn. I look at this picture my mom took, me with sleeping Liam, 3 days old. Both of us wearing light blue, a color of joy and innocence. My unlined face, bright eyes, hopeful and sure and joyous. This picture symbolizes for me how innocent and free I was then – completely unprepared for the hell that was just ahead.

Liam has that same shape to his lower lip today, the same sweet spirit shining through when he sleeps. But now, six years later, I see something else in him. Not a boy “broken” or “less,” but a boy wiser-a little sadder, a little lost, but still filled to the brim with love. I can’t help but picture who the baby in that picture would be today, if fate had a different path for him. Would he have lots of friends, play outdoors in a treehouse for hours on end, make up stories about outer space to share with anyone who would listen? Would he be constantly growing like a weed, tall and thin like his uncles were? Undoubtedly he would be just as handsome, if stronger and more at peace with the world. The Liam today is a sweet soul with a beacon of energy and joy surrounding him. He scampers in the backyard, but tells stories to himself in an energetic babble. He loves outer space, but he plays with a toy rocket and stuffed animals, counting down from 10 and collapsing in a pool of giggles. He communicates all the time, but in short sentences like “Liam sad” and “kim possible gym next week” – his way of sharing his wants and desires with the world.

Liam is the same boy in that beautiful photo, but a boy engulfed in a world of autism, shortened by a kidney disorder we were blindsighted by. I am the same mom in the picture, but if you take a photo today you would see some different things in my face. There is still joy and hope, but it is cautious and more guarded. Defeat sometimes creeps in, and the smile has a weary edge to it. I have not done enough for my child, yet I have done so much.

For the past five years I have been trying to reconcile my best intentions with a parasitic malaise that lays its hands on me. I want to “cure him,” and at the same time accept and love the unique person he is: a child unlike any other, to cherish and be cherished by. I look to others stronger and more knowledgeable than me to take the reigns on his care and the administration of that care – instead of completing the journey of “mother warrior” to figure it out myself and lay my claim upon his recovery. Because if I won’t fight for this kid besides me – who is with him more than anyone else – how do we know who he will become? The light blue-sweater boy with the content smile, sleeping on his mother’s chest…confident with himself, able to find his place in the world and communicate who he is so he can soar. Or will he be a sweet, mysterious child lost in his own world: with infinite love for his parents and caregivers, but not quite able to grasp the intricacies of peer interaction and social dialogue. Or a combination of both.

I want to find the joy and hope I see in my 29-year-old self – confident in the possibilities before me, of a new chapter in my life. Not the self I am today. Wiser, sure, more patient. Sadder, yes, and more aware of my own failings and the chaos of the “special needs” world. My challenge now is to rediscover that joy and innocence in whatever possibilities exist today – and temper them with bulldog determination to DO ALL THAT I CAN to help my son’s brain develop. I have lost a lot of time, due to excuses and laziness and allowing myself to be overwhelmed. There is no time to lose in making it right to the best of my ability. Liam Thomas is the boy who lived – and I will become the mom who DID.

This is our story.