Some of you reading already know this, and for others of you it will be the first time you hear it. It was 2 years ago last week that our family received some news that rocked this mom's world. Long story short - Trevor went in for a 'routine' dental visit (his first in fact) and we left with questions, tears and some fear. Trevor has an (unofficial diagnosed) genetic disorder that affects his teeth. He lacks a handful (approx 14) of his adult teeth. They will never grow in and he will have thousands of dollars worth of dental work throughout his life.
Side Bar: The official term is Ectodermal Dysplasia (please do not google it as the photos will only disturb). It is a genetic disorder (the Dr feels is x-linked; therefore from my gene) that affects teeth, hair, skin, sweat glands and/or nails. At this time we feel that Trevor is only affected in the teeth and nails, but we will monitor his skin/glands as he grows and becomes more physically active in team sports. The Dr also feels that it is a mild case.
Back to my shock and dismay on that epic dental visit. If you know me, the dentist and I aren't best buds to begin with, so my anxiety was already on high alert. I was furious at how we were informed, the way we were treated at the dental office (that's a whole other story) and in denial that this was happening to my PERFECT little boy.
So why do I write this post now? Well in all honesty I wrote a few posts about this back then, chronicling my feelings, emotions and thoughts. They lay in my 'drafts' section, never published for numerous reasons. As silly as it sounds, an episode of Teen Mom 2 (and some discussion with a dear friend) made me think about this momentous day again. Leah, mom of Ali, who is diagnosed with a rare form of MD, is shown leaving a shop where she ordered 'her daughter's first wheelchair' and she asks her mom via text 'how am I supposed to feel?' Well I remember asking myself that question. How am I supposed to feel about my child's diagnosis? I was telling the tv ( Leah ) that "you feel however you feel. You have every right to feel however you are feeling - whether it's hope, despair, sadness, grief, anger, frustration or denial." It took me months, maybe even these 2 years, to come to terms with that myself.
It's a blow to the gut (or a stab to the heart) when a mom finds out that her child is not in fact 'perfect.' I initially cried, sobbed in fact. I remember rocking on the bed, sobbing, one night screaming "why! Why Trevor!" I remember scouring the internet looking for anything but what the Dr 'suspected;' reading articles, crying over pictures I saw, and imagining every worse case scenario. I remember getting mad at myself for being 'so pathetic' - other children were dying, terminally ill or diagnosed with 'worse issues' and here I am crying about some missing teeth.
It took awhile to realize that it was ok to feel all those things (some days all at once). That I shouldn't feel 'guilty' about being upset that my kid didn't have teeth while others fought daily for their lives. There are still days I have to remind myself of all of these things - mostly that it's OK to feel however I feel. I am a mom. I will always worry about my child. I will always see him as PERFECT though the outside world may not. He is his "normal."
So to all you moms (or dads) out there - whatever you are dealing with with your child - it is ok.....feel how you feel.....advocate, yell, cry, do what you need to do to help you through the emotions and validate that your child is in fact PERFECT just the way they are.
https://www.youtube.com/watch?v=ocDlOD1Hw9k
"Pretty pretty please, don't you ever, ever feel that you're less than, less than perfect........cause you're perfect to me!" --- P!nk
