In the Name of Love

As I posted a couple of weeks ago, I just recently had my first baby. He was born at 38 weeks, a healthy 7 pounds, 12 ounces. According to his discharge papers, the pregnancy and delivery were “uneventful”. Even as I read that now, I have to giggle a little. Uneventful? Really? Is that what you call 9 months of discomfort, stretch marks, and worry, followed by 24 hours of intense pain, ending with the arrival of a totally helpless little baby who depends on you to meet his every need? To me, that seems pretty eventful.

Even though the pregnancy and delivery were uneventful, we did have one small “event” at his first pediatrician’s appointment. He was diagnosed with jaundice. His bilirubin levels were significantly elevated, but not enough to warrant intervention. At his 8 week appointment, he still looked a little yellow, but his bilirubin levels were only mildly elevated. Nothing to worry about. At least, that’s what the pediatrician says. As his mother, though, I’m holding him up in every different kind of light, staring at the whites of his eyes, asking, “Does he look yellower to you? Is that a sunbeam? Please excuse me while I go set my baby down in it!” My cat is starting to get jealous because the baby is stealing all of his sunbeams!

This has all gotten me thinking…If my experiences with pregnancy and delivery were uneventful, what would an EVENTFUL one be like? If I’m worrying this much over jaundice, a relatively common issue in newborns, what would it be like to have an UNCOMMON issue identified in my son?

Over the course of my ten years in the field of genetic counseling, I’ve taken hundreds of pregnancy and medical histories. So many of the families I’ve met have experienced those “eventful” pregnancies and those “uncommon” medical issues. They were seen in the high risk pregnancy clinics, and their children see specialists and therapists in addition to their pediatrician. Of course, I always knew that these families face unique and difficult challenges. I’m starting to realize, however, that I didn’t fully understand or appreciate the stories that these families share with me. Let me explain.

Parents of children with special needs are forces to be reckoned with. They advocate tirelessly for their children. They fight for better services in the school system. They seek out second (or third or fourth) opinions on how to best care for their child. They become the experts, teaching their child’s providers about their child’s condition. They reach out to other families in similar positions, searching for new ideas and support. Before I was a parent, I wondered at the depths of parental love. The lengths that parents would go to on behalf of their child astonished me. Now that I’m a parent, I understand the words “love” and “devotion” so much better. I cannot think of anything I would not do for this little guy, if/when the need arises. I would step in front of a bus for him without a second thought.

With this deeper understanding, though, comes an even greater awe of the families of children with special needs. In the moment it takes a doctor to utter a diagnosis, reality shifts for those parents. Suddenly, challenges such as sleeping through the night and potty training become secondary to more pressing concerns. “Will my child need surgery? Where can I get an apnea monitor? How can I get more therapy? Will our insurance cover this? Am I making the right decisions for him? Is there anyone else out there dealing with this?” Those dilemmas make routine parenting issues seem minor.

As a new mom, I’m sometimes overwhelmed by my new responsibilities. Feeding, changing, bathing, and soothing the baby alone seems to be a full-time job. And then there’s the household chores, the errands, the part-time job, and the occasional social outing. As I put the baby to bed, I always ask myself the same question, “Where did today go, and why couldn’t I get everything done?”

Parents of special needs children have all of those “typical” things on their plate, but they also have to make and keep all their doctor and therapy appointments, deal with insurance companies, attend IEP meetings, do research on their child’s condition, and more. And some parents go even further, and start raising funds for research, volunteering to organize events, keep blogs, etc. and so forth. Amazing. I’m not sure how they do it, but they do, and I am in awe of them.

So, in summary, having a baby of my own has given me a deeper understanding and appreciation for the parents of children with special needs. They go above and beyond, and all in the name of love.

And, well, because I’m a proud momma, I can’t help posting two pictures of my little boy, who is teaching me new things every single day.