When I first expressed my intention to adopt Darrel, the nurses repeatedly warned me, "He is a premature baby with complication at birth resulting in loss of oxygen supply to the brain. You are facing risks of severe brain damage, mental retardation, delay in speaking, walking or other developmental delays. None of those can be predicted at this stage. Are you sure you don't want another baby?"
To which I repeatedly and stubbornly answered "It won't matter, I'll love him anyway."
Today Darrel was diagnosed with cerebral palsy. He's been tiptoe walking for a while and I've read that the most common causes are autism or cerebral palsy (CP). Through my reading, I've noticed that CP's symptoms alarmingly resemble Darrel's condition. But I tried to calm myself and kept hoping it isn't true. But hearing a specialist declaring the diagnosis is like realizing your worst nightmare has come true, except it's ten times worse.
"OK, will he ever be able to walk?", I asked.
"Most likely yes, but not as a normal child would."
"On a scale of 1-100, how close will he be compared to a normal child?" - silly control freak me tried to seek solace in numbers, in statistics.
"85 - 95, depending on the severity and the location of the brain damage, ma'am."
Let me tell you, there is nothing as painful as hearing your child being declared damaged in any way whatsoever. No matter how kindly it is said.
That's when I lost it and bombarded the poor man with questions about possible treatments: Will he need braces, or casts, or physiotherapy, will surgery be necessary - if so, how would you weigh the risk of anesthesia compared to the benefit - what age do you think is most ideal to perform the surgery, will he need muscle relaxant treatment - I've read that not all of them are FDA approved... and so on. Basically, I blurted out every reading materials I've went through for weeks, while I'm sure those had been his reading materials for decades.
When the doctor finally able to stop my avalanche of questions, he reminded me not to get ahead of myself and imagine the worst. That further tests are necessary to determine the degree of severity and then and only then suitable treatments can be decided. So he sent me home with a recommendation letter to perform more tests.
Keeping my promise to love Darrel anyway is not hard at all. What's hard is imagining the number of tests and procedures he'd have to go through, the peer pressure when he's old enough to understand it, the possibility that he'd be dependent on walking aids, worrying who would take care of him when Hardi and I are no longer alive. Prognosis like "premature aging, deteriorated life quality around the age of 40 etc" haunted me during the long drive home.In my mind, I tried to control things that will happen 10, 20, even 40 years from now.
And then Darrel woke me up from my thoughts, "Mama... sun... sing!"
He saw the sun in the sky and asked me to sing one of his favorite songs, Mr. Sun. So I did and he sang with me, clapping his hands merrily throughout the song. Although 10 minutes ago he was still screaming on top of his lungs when the doctor examined him.
He reminded me about the seemingly endless capacity children have to be happy. About the fact that he is a survivor - he's been through two surgeries before he reached the age of 4 months. He's had IVs stuck to his head for months. He's survived another severe lung infection when he was 6 months old, even though at that point the doctor told me: at this stage, ma'am, all we can do is pray. He beats the odds, every single time. And here he is, happy as can be, as if nothing bad ever happened to him. And isn't that what matters, eventually?
And I remember this picture taken on his birthday not a week ago:
His happiness is what matters, that much I know now.
And whatever the result of our efforts may be, I'll make damn sure I'll give him enough reasons to have that smile on his face. With his cheerful nature and the endless natural joy he seems to carry and spread to everyone around him, I'll say we have a pretty good chance.
You know that old adage, the one that goes: Our children are our best teachers?
I, for once in my life, shut my mouth and don't argue.
