By Ellen S.
"Your baby had a stroke." With those five words, my life changed forever.
Of course, it was going to change no matter what—we were having our first child. But suddenly, we were blinded by a monstrous, mind-boggling complication my husband and I could have never imagined. Not even in our worst nightmares.
I'd had a perfectly normal pregnancy. I needed a C-section. Max had come out with great Apgars, a healthy seven pounds, six ounces. "Pediatricians' kids don't have such great Apgars," I remember one of the doctors joking.
And then.
He turned blue while breastfeeding. A nurse smacked him on his teeny back; I recall her saying that he was gagging on mucus and it was totally normal.
And then.
He again turned blue as I was holding him. They whisked him off to the NICU.
And then.
A resident noticed one of his teeny feet was twitching. Our newborn was having seizures.
And then.
They did an MRI. Three days after Max was born, a team of three pediatric neurologists sat us down and told us what they'd found. He'd had a stroke. A bilateral stroke, meaning it had stricken both sides of his head. It was very rare to have a bilateral stroke, they said very gravely. He may never walk or talk, they said. He might have trouble seeing and hearing. He might have mental retardation. He might have cerebral palsy. The list of "mights" was so devastating, it was too much to comprehend. I couldn't even sob, I was in such shock. My husband did.
Nothing can begin to describe the grief we felt that day. Or the overwhelming sense of helplessness. I wanted to do something, anything, to help our son. That day, I ran to the Internet and started doing research. Immediately, I found Pediatric Stroke Network, a resource that's proven lifesaving to this day. I immediately began reaching out to other parents. I told them what had happened, asked how their own kids were doing, asked for any advice they could give me.
In the years that followed, I went into overdrive. I signed Max up for our state's Early Intervention program, and made them give him the maximum number of therapies possible. I got him private physical, speech and occupational therapy, even swim therapy. We tried alternative treatments, such as cranial massage therapy and hyperbaric oxygen therapy. We bought him a bazillion educational toys. We played with him constantly, massaged his muscles, spoke to him nonstop. We clapped like maniacs when he learned how to pull himself up, cheered loudly when he started commando crawling and navigating a walker, and cried from happiness on his third birthday when he toddled across his bedroom and fell into my arms.
I felt good about doing all we could to help Max develop. But I felt so lonely. My husband has always been there for me, it's just that I wanted to hear from moms, too. I have many good friends who are parents, but they couldn't understand what I was going through. Nor could my loving father, mother or sister. Sometimes, I heard the sadness in their voices when we spoke about Max, and I didn't want to burden them. I needed something more.
Finally, I decided to jump on the blog bandwagon. It took me a while—I wasn't sure I was ready to share my thoughts and feelings with the masses. I wasn't even sure what to call the blog, although in the end that came easily: To The Max. I knew writing a blog would be cathartic. And I figured it could also help other parents of kids with special needs. We could share experiences, advice, frustrations, good laughs over the craziness of parenting and, in particular, the craziness we have to deal with as parents of special-needs kids.
The blog is also a tribute to my son, who has amazed us all. He's a kid with relatively mild cerebral palsy who's very bright. He walks, even trots. He charms everyone with his smile and sunny personality. He loves to play, visit the zoo, watch videos, ride his bike and eat ice-cream, just like any other kid. Yes, he has his challenges—he has trouble using both hands, particularly his right. Eating doesn't come easily, because of muscle issues. And he's not yet talking although, miraculously, he has a bunch of words. The day he finally said "Ma" was probably the best day of my life.
Blogging has been an amazing experience. I've hooked up with other moms of kids who have CP and special needs, and every day after I post I look forward to reading their comments. I'm happy to have opened up a discussion, and look forward to hearing from many other parents. I'm happy to have a forum to download my brain. And I'm happy, so happy, that I don't feel alone anymore.
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