Raising a Special Needs Child

06/06/2010 05:12 am ET | Updated Nov 17, 2011

The waves of relief that had washed over me in the delivery room when I heard Stacy's cry crashed on my abdomen like a punch in the gut. "Are you sure about your dates?" my obstetrician inquired. As a pediatrician myself, I knew the question meant trouble. Yes, very sure. Stacy was conceived on Valentine's Day and was due in another four weeks. But, 36 weekers were almost full term and usually did very well. After all, hadn't the OB told me yesterday that she was sex pounds from the ultrasound?

Her birth weight was three pounds, 13 ounces. My OB showed my blurry eyes my small placenta, half of which was gray and shriveled. An unrecognized clot in my placenta had left it under-equipped to provide adequate oxygen and nutrition to my newborn daughter. Secondary brain damage was a distinct possibility.

My first two thoughts were from my emotional id: Oh, darn, now she'll never be able to go to Harvard (an unfulfilled goal of mine). And, a cry of excuse: I did everything right, I did, don't blame me! By then I was alert enough to ask a doctor's questions: Would she be okay, how was she doing, what was her prognosis, how did this happen, what should we do?

I wanted to believe that everything would be okay, even as the months passed by and we saw that Stacy's developmental delay would not simply be mild, but severe to profound. By four months, we knew she wouldn't develop typically; by 18 months, that she would need care for the rest of her life. Stacy's first years were a treadmill of sleepless nights trying to soothe her uncontrollable crying and feed her an ounce of special formula at a time through a preemie nipple to augment her poor suck. During the days, we left no stone unturned medically trying to uncover what had happened -- virus, trauma, blood disorder, genetic/metabolic abnormality -- anything that we -- I -- could use to assuage the constant guilt I felt at the loss of the daughter of whom I had dreamed. Nothing. All the tests were normal -- and the Stacy I'd imagined during my pregnancy was gone.

With no appeasement from the medical work-ups, I was overwhelmed with guilt. If only I hadn't drunk that one can of Mountain Dew. If only I hadn't kept working in my eighth month. If only I hadn't walked outdoors in the Pasadena summer heat. If only I had been more assertive with my OB, asked more questions, demanded proof of Stacy's growth. If only we hadn't flown to Europe, albeit with my OB's complete approval, in month five. If only we'd planned our wedding for the two months before Stacy's conception, rather than the two months after. If only I'd eaten healthier food in the first trimester when the nausea kept me on crackers and cheese. If only I'd eaten less food in the third trimester, when Stacy wasn't getting her share. If only I'd been younger, and not 37, an "elderly primigravida" in the jargon of the day. There was not one night that I didn't relive each day, asking myself what I could have done to prevent what happened, and berating myself for not doing more.

We enrolled Stacy as an infant in the UCLA High Risk Intervention Program, where I met a large group of mothers, and several fathers, who shared the challenge of raising special needs children. Few of the babies and toddlers were as severely affected as Stacy, and most, happily, benefited from the outstanding treatments and efforts of the dedicated staff. I was grateful to be able to bond with other families experiencing similar circumstances, but distressed to see the effects of those circumstances on our own mental and physical health and that of our families. Some marital relationships grew stronger as both parties addressed stress, fear, fatigue, anger, and depression, and worked together as allies to meet their child's needs. Other relationships collapsed; I remember consoling a tearful young mother who relayed that her husband had left their home and marriage, unable to deal with having a mentally retarded son; and wondering if that would be my fate as well. If only I had borne a "normal" child, I wouldn't be projecting my self-blame on my husband's weary features.

Fortunately, my husband's love, loyalty, and ethics kept him by my side. I had lost the daughter I had hoped to welcome into our family; I could not have borne losing him as well. Together, we mourned the little girl we would never know, and loved the little girl that we'd been blessed with. Eighteen years later, Stacy has grown into a beautiful flower, whose giggles let us know she's happy without words. Hearing our voices, she looks up from her toys on the playroom floor and smiles -- unable to talk or walk, her life is not books and ballet as I had dreamed, but her joy in life emanates from her twinkling brown eyes as she hears the music from her colorful toddler piano. My husband and I are no longer always sad -- comforted by Stacy's happiness, the birth and maturing of our two sons (with a different obstetrician), and each other -- we have accepted life's gifts as they have come, and have realized that tragedies sometimes come with a silver lining. Such as, in our case, a deeper and closer marriage, and a readjustment of our values to embrace unconditional love rather than high expectations.

It took me years to stop blaming myself for something over which I now accept I had no control. A friend of faith had once told me her view that God carries a bagful of tragedy that he sprinkles like confetti randomly onto the Earth. When the tragedy lands in our laps, we should not blame ourselves, but instead marshal our resources into addressing any challenges and promoting our recovery. The advice was wise and helpful, (though I'm loath to believe in a deity that actively deals out tragedies), because it gave me a way to abolish "If only I had" from my inner dialogue. Like most of us, I've endeavored in my life to do things as best as I could, and I've finally realized that was all anyone could ask of me -- and that I could have asked of myself.