One of the hardest things for me to describe about my experiences as the mom of a child with some special needs is how lonely it sometimes feels. It's weird for me to say this because I have wonderful family and friend support. There is a plethora of people available to hear me and help me, should I need them. But I find it difficult to always adequately express what is bothering me about my 5-year-old daughter, diagnosed with Noonan Syndrome at 15-months old. Though I am a writer, there are just some worries I can't put into words. Often, there's no concrete reason for my concern... it's just a feeling I have. And let me tell you, for moms, and especially those of children with issues, feelings are our inner Garmin.
Have you ever heard the principle of Aristotle that is taught in law school? Absence of evidence is not evidence of absence. That one theory best encompasses my experience as the mom of a child with special needs. So much of what I experience with her isn't tangible. It can't be seen. Often it can't be put into words. But still, I know it's there. And often, that's why I feel alone. Because how do you share something you can't even put into words. How do you share the shadow of a feeling?
I think that's what I appreciate most about the Different Dream books, and in particular, Different Dream Parenting. From the first page I felt understood by people I'd never met who are in situations completely different from mine. They know what it's like to chase a feeling and feel like you're chasing your tail. They know what it means to know your child so well, to be so connected to your child, that with just one look you know something is wrong... even if there are no obvious signs. It's vindicating, I tell you.
I appreciate greatly how this book takes the words of parents and follows it up with supporting scripture, and advice from physicians and experts. Prior to reading this book, it never occurred to me that children who've gone through medical trauma could suffer from post traumatic stress disorder (PTSD). But it makes so much sense. Reading that in the book was a head-slapping moment for me. Duh! Of course something like medical trauma could result in PTSD for a child. Why didn't I think of that? Probably because my head is a constant jumble of other worries and concerns. And even though I don't believe my child suffers from PTSD, that section of the book really helped explain to me why my daughter freaks out when anyone in scrubs comes her way. Or why she won't look her doctors in the eye and stares at the ground and hangs on to me for dear life when they're around. It explains why they have to strap her down at the dentist. I can't tell you how awful it feels to hear your child screaming as you sit in the waiting room. And then to see your child emerge from a simple dental procedure, with her face swollen and red, and her body marked from the straps that held her down, is, in a word, horrible. Sometimes I think I may have PTSD from having been the sole witness to such situations over the past five years. Though I don't believe my daughter actually remembers all the poking and prodding and testing and hospitalizations that came prior to her diagnosis, I do believe she knows it happened. It stuck with her. And knowing such behavior isn't uncommon for kids in her situation is comforting to me.
Different Dream Parenting is chapter after chapter of such realizations for me. Lots of "ah-ha!" moments. Most of all, the book puts all these things in perspective. Yes, our experiences are ours and they're all relative, but it's so calming and even vindicating to know there are others who feel how I feel... and know what I know: From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked. (Luke 12:48).
I am up to the challenge.