Special Needs

When I'm a Mother... Mac n' Cheese, TV and Bedtime

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     Before I had kids, I knew everything. I knew how I would birth, when my kids would hit their milestones and how I'd nurture and guide them. They'd eat healthy food and would never, ever, watch terrible, repetitive cartoons. I'll wait for the experienced moms to stop laughing before I continue.
      Like many slightly-crunchy Portland moms, I knew I'd have an uncomplicated, drug-free delivery, and that my children would sleep cuddled in my arms. My baby would sleep sweetly in a sling while I continued my classes and did my research to finish my degree, and they'd behave at the doula-owned baby store where I was employed. Then my midwife walked out of my labor, and I had to have an emergency C-section to deliver my daughter. She nursed just fine, but screamed twelve hours a day, and would only fall asleep in a cool, dark room. She came to school with me, but kept trying to take over the class, and once she was mobile, she tried as hard as she could to sneak out of the store and get hit by a car. She didn't talk until she was nearly two and a half, making do with sign and screaming. Still, aside from those few setbacks, a bout of flesh-eating staphylococcus bacteria when she was 18 months old, and some rather severe Obsessive/Compulsive tendencies, I thought we were mastering this whole parenting gig. I figured I'd learned from my mistakes. The next child, would be easy. This time, I was ready.
      When my son arrived via VBAC, I had five blissful days with a baby who snuggled, didn't cry unless he wanted something and was content to be fawned over by his big sister. At his newborn checkup, we were sent for his first battery of tests. By the end of his first month, we could regurgitate phrases like “functional bi-cuspid aortal valve” and “non-syndromatic mutli-suture crainiosynostosis with cloverleaf deformity.” At two months we had a nearly six hour neurosurgery behind us, and still we kept the television off and did enriching activities. My son progressed normally, rolling over, sitting up and learning to crawl well within the typical parameters, getting to be big and fat and healthy. His second surgery, at nine months, was only three hours long, and we were told we only had one more to do sometime down the road. Finally, we were getting our lives back on track.
      And then, around his first birthday, he stopped. Just froze in time. In the more-than-a-year since he turned one, he hasn't gained a pound of weight or an inch in height. His head is no bigger, which means there will be more corrective surgery, but there's no pressure on his brain because it isn't growing either. He still can't talk, or stack blocks, or put together a puzzle. He doesn't pretend, or understand simple directions. He only learned to eat solid food a few months ago, and still chokes on meat and yogurt. All of his blood panels and skull scans show nothing out of the ordinary, no lesions on his brain or weird hormonal deficiencies. His genetic tests come back normal, across the board. Yes, his neurologist at Doernbecher is concerned with his global processing delays, but his neuro-developmental age closely corresponds to his physical size, according to his evaluation by the Multnomah Early Intervention people. He's a happy, smiling, adorable one year old boy, who just happens to be nearly two and a half.
      When you become the parent of a medically fragile child, or a child with any kind of special-needs, things change. You change. Chances are that you'll dust less and grow more patient. Your focus, your personal goals and your dreams change. They have to. You no longer have the luxury of focusing on the ephemera. Your children will sometimes leave the house in mismatched socks, and so might you. You may find that you have to put your professional or educational plans on the back burner to wade through IEPs and evaluations, scans and screenings, tests and therapy appointments. You also have to exchange your dreams of a perfect child for the hope that they reach their full potential and are happy. You may grieve over the fact that your child's disability prevents them from being an astronaut or opera-singer, but you learn to dream of them speaking, walking independently, or making their first friend. In time, you learn that these aspirations are just as fulfilling. This isn't to imply that all the little things fall away leaving you able to focus only on your child's health and development, because bills still need to be paid and dinner still needs to be cooked. You life is never the same, though
      All this goes to say that today, I found myself holding my son down on a gurney at Doernbecher and trying to distract him from his heart scan with a Dora the Explorer video. After he'd thrown up the apple juice the cardiologist gave him and slept off the sedative, he awoke ravenous, and I nearly wept with joy to see how happily he gorged on a dinner of cookies and a few spoonfuls of macaroni and cheese. Am I plagued by mommy-guilt? Of course I am. However, like other moms of developmentally atypical kids, I need to learn to cut myself a break over the fact that he sometimes eats crap and likes TV.

 

Written by Carissa Martos, mother of (and advocate for) two children with special needs.  She also teaches family sign language lessons in Portland Oregon, through PDX Loves Signing.