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Why I Was Happy When My Son Was Diagnosed With Cerebral Palsy

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When my then 18-month-old son was diagnosed with spastic diplegia, a common form of cerebral palsy, I didn’t cry. I wasn’t the slightest bit upset. Actually, I was thrilled.

I had believed for months that Mason had cerebral palsy, but it felt like nobody else would acknowledge my concerns. At 9 months old, he could not roll over either way, could not crawl, kneel, or pull to stand, and had just started to sit, but often arched backwards and toppled over. His history is a litany of cerebral palsy signs. Mason is a twin, and he was born prematurely. He has high muscle tone throughout his body, gross and fine motor delays, and he favors the right side of his body. These clinical signs really should have been enough to diagnose CP, but doctors and therapists continued to tell us to “wait and see,” or they blamed prematurity for Mason’s delays.

At 14 months, Mason had an MRI, and it showed moderate cystic periventricular leukomalacia. The short explanation is that his brain was deprived of oxygen at some point during pregnancy, delivery, or his NICU stay, and this caused damage to his white brain matter. His lower lateral ventricles are larger than normal, where brain matter was so damaged that it essentially disintegrated, and the area filled with cerebral-spinal fluid. According to JAMA Neurology, PVL is the “most common cause of cerebral palsy in premature infants.” And yet our neurologist at the time would not diagnose cerebral palsy. In fact, he told me “almost all preemies” have PVL, and that it doesn’t necessarily “mean anything.” This, of course, is wholly incorrect. A 2009 study showed that between 4 and 25 percent of premature babies develop PVL, with best guess averages around 6.3 percent. Not remotely close to “almost all.” Did this doctor forget about Google? Or did he just expect I would blindly accept his words as the only answer?

We finally chose to move Mason’s care to a respected children’s hospital six hours from our home. We met first with a pediatric orthopedist, and less than two minutes after meeting Mason, he used the words “cerebral palsy.” It was August, and I was dripping with sweat after carrying Mason while running through the huge hospital’s many corridors, late as usual, searching for the right wing and floor. Mason was sick at the time and fairly miserable, but we made the trip anyway because we had waited four months for this appointment. He squirmed in my lap, whining. We were both overtired and hungry. But in that moment, when this young, nonchalant doctor, who is considered the very best in his field, confirmed that my sweet, gentle, middle child did have cerebral palsy — I felt only joy and relief.

I don’t remember the rest of what this doctor and I talked about, only that he said, “We can help you.” Finally, someone – a most important someone – acknowledged that I was right. I wasn’t an overly dramatic mother. I wasn’t a hypochondriac. I wasn’t imagining this. When Mason’s shoulder blades grind and crunch under my palms while I am holding him, I know why. When he tries to sit on the kiddie chair at library story time and falls off four, five, and six times, I know why. When he “forgets” about his left hand and holds it out awkwardly, balled up and hovering, I know why. When he wakes up at night with painful muscle spasms, I know why. When he began to have staring spells and complex partial seizures, I knew why. When he struggles to speak, trips over nothing, bumps into walls, holds his feet curled into C shapes, and needs to be carried after just a short walk — I know why.

I also need to say I was happy to get a cerebral palsy diagnosis because in the world of pediatric neuromuscular disorders, mild CP isn’t that scary. CP isn’t fatal, it isn’t progressive (though symptoms related to increasing spasticity can worsen as a child grows), and my son’s pain level has been relatively easy to manage. I hope to teach Mason to validate his own struggles and triumphs, but to also maintain perspective, and know that he is a damn lucky kid.

Mason has mild spastic diplegia, but cerebral palsy certainly doesn’t define him. He is obsessed with cars and trucks, and he loves his siblings, playing outside, and lollipops. Mason is a daredevil. He likes to climb the furniture, swing high and slide fast. If he hears music with a good beat, he has to dance his booty dance. His favorite foods are milk, fruit, and pizza. I have never seen a child who hugs as purposefully as Mason; he squeezes tight and makes us feel loved.

Still, cerebral palsy is a part of Mason we see each and every day. The quirks now are just a part of who Mason is, as inherent as his crystalline blue eyes. Before his diagnosis, his differences were red flags I couldn’t turn away from. I couldn’t sleep, and I spent every spare moment seeking answers. I’m not a doctor, a research assistant, a therapist, a diagnostician, or a service coordinator, but I have played all of those roles as the mother of a child with cerebral palsy. I know there are many mama bears still looking for answers. Keep fighting! Because when a mother knows in her gut and in her heart that something about her child is atypical, having the “why” means everything.

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Photo credit: Casey McClean

Originally published: March 27, 2017
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