Dorje’s First Birthday

As we near Dorje’s birthday I find myself immersed in memories. Moments fly in and out of my mind’s eye and I feel feel feel…pain, joy, fear and more fear, worry, extreme joy, love such as I’ve never before experienced, and never thought I could.

“It’s not his growth that’s the problem. It’s his brain.” Cascade, eruption of tears, Niagara of tears and sorrow, my baby is going to die, how could this happen to my little boy. Fear that he’d die, fear that he’d survive. “If he survives birth, his life will be meaningless.” Meaningless. Anger. How dare they determine the value of human life, how dare they proclaim absence of meaning over someone’s life. How dare they. Then, prayers, and an ocean of support. Prayers from every state, every country, prayers and support, and help, and money, so many people praying for this little baby, so many people praying for a life to begin.

Then the miracle. The warrior’s cry, he’s alive, he’s crying, he’s alive, he’s alive, he’s alive. So many tears. I remember the hospital, such joy, an answer to prayers, it worked, prayers work! Then that first sleepless night, oh my god, he’s alive, now what, what will his life be like, is he going to suffer, is he going to be in pain, what kind of life will he have. All night I held him to my breast, all night I held him close to me, afraid to sleep, maybe he’d stop breathing, afraid to stay awake, afraid to think.

Can I hope for a miracle? Will his brain heal? How can he live with a brain like this?

Then home. Being a mother. Being a family. 2 short weeks we had to settle. Then the crying began. We lived surrounded by shrieks of agony, screams of pain. We bounced and bounced and bounced, and walked and dance and drove, we shushed and swung and bounced. Our days were measured with how many times we got him to stop. Then, New York, Medicine Buddha empowerment, and the day after we returned, the answer. Hydrocephalus. Massive headaches and pressure. How he must’ve suffered. And all I could do was anything to stay put, anything not to run away, anything for the screaming to stop.

Hospital. Surgery. Agony. There is nothing like seeing a tiny baby with a horseshoe scar in his skull, butterfly on his stomach. I never thought I could survive it, I never thought I could handle seeing his suffering, if only I could take it all, if only it could all be happening to me, I’d give anything for it to happen to me, not to him.

Then home. 10 days later, we’re back at the hospital. Mother’s intuition – infection. Doctors – he’s okay, nothing wrong. 1 month later. Shunt infection. Meningitis. Urgent surgery. 23 days in the hospital, 23 days in a space the size of a refrigerator, 23 days without leaving a room, a room where the lights were always on, where any moment he could stop living. The 23 hardest days of my life. The 23 hardest days of Dorje’s life. 23 days with an open hole in his skull, a tube sticking out of his brain. How did we survive? How did we get through it? Prayers and blessings, the invisible nutrition that kept us going between 12 hour shift after shift.

It’s been 5 months since we’ve been home, away from the hospital. Our joy is measured in days, weeks, months away from the hospital.

Most importantly, our days now are driven by our baby’s smile. Those graceful smiles he gratuitously gives. There’s always a smile in Dorje’s heart. I’ve never met a soul so light, so full of joy, so abundant with beauty.

10 therapies a week, he gets. PT 4x, OT 2x, Child Development, 3X, Vision once. An entire new vocabulary full of acronyms. Physical therapy, occupational therapy, aquatic therapy, hyperbaric oxygen treatments, infant massage, acupressure, g therapy, adeli suit therapy, early intervention, IFSP, regional center, DDS, Protection and advocacy. Our life is full of acronyms now. Full of wonderful people with kind, giving hearts that go above and beyond to help our angel, our miracle boy. I never thought it would be like this. 10 hours a week of work is a lot for someone not yet one. 10 hours a week could mean the difference between 0 ambulation, 0 speech, a lifetime in a wheel chair, observing the world.

And every day I wondered, is he happy? Can his life be meaningful? Will he walk? Will he talk? Will he have friends? Will he laugh, love, play. Every day I worried. Every day I wondered.

I tell myself, we are fortunate. I tell myself, what would life be like without him. Most of the times, I wouldn’t change a thing. If I am asked today, would you turn back the clock to conception, would you make him perfect. 95% of the time, he is perfect as he is. I would want nothing different. Then there’s 5%, when I am over tired, when I can’t keep it together, if only, if only, why him. Why not me, I’ll take it all, why him.

Today, as I face this very special day, I know. I know why him.

I look into those eyes old as the sea and I understand the very meaning of love. I look back at what life would’ve been like without him. I would still be obsessed with perfection. I would still be squandering my life, working, sleeping, working. I would still be building a sand castle, a grand sand castle, believing mine would remain, against the sea, time, mine would remain.

Then Dorje appears to shatter all misconceptions. He appears to take my hand and say, follow me, I will show you meaning, I will show you gratitude, I will show you joy, I will show you selfless love. I will show you how to lead a life worth living.

My 1 year old baby has taught me more than any other person in the world.

It wasn’t until a week ago that I put my worries on a raft and pushed them out to sea. Would you worry about an angel’s future? Would you worry about the sun? Every day I think, healthy, happy baby. Peaceful baby. Joyful baby. Loving baby.

He is the mirror in which I have seen myself, the mirror that has shown me where I am pure, where I am afraid. He showed me so much fear. And with that contagious smile he said, let go of fear. Let go. Just love. Love and don’t fear.

Now my baby lays asleep in bed next to me. Shortly I will hold him tight against my chest and nuzzle him against my neck. He sleeps best that way. And my heart floods with gratitude and love. Why me? How was I so fortunate to be chosen by this angel.

Awake butterfly.
It’s late.
We’ve miles to go before we sleep…and miles to go before we sleep.

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