There's something I want to share. Something personal and private, something close to my heart.
I had thought to keep it private, to let my family face this alone and unknown, but I couldn't. My wife and I decided that perhaps our experience can help others, that maybe the road we are called to walk down can be of use to someone else. I'm not one of these people to wear ribbons or host telethons or get a colonoscopy just because Katie Couric said to, but sometimes these things just hit so gosh darn close to home that you can't keep quiet. You have to speak out.So I am speaking out. If my family's experience can shine the light of public awareness on my daughter's affliction, if we can help just one other child, or make the way easier for a single family, then our pain and loss of privacy will be worthwhile.
So here goes. I have something to announce. My daughter has dysrationalia. We have been suspicious for a while, and it was confirmed last week.We are a family with dysrationalia because when one member of a family has dysrationalia, it impacts everyone. Since the diagnosis, our house has been turned upside down. Every part of our life has been impacted.
Further, dysrationalia is genetic, and when one member of a family has it, there is a very strong likelihood that others in the family will have it as well. And though I don't want to go into too much detail, when our daughter started showing the signs of dysrationalia, I was quick to recognize the familiar tell-tale traits such as the fits and emotional break-downs.For children in the early stages of dysrationalia there are many signs of what appear to be emotional and psychological disorders. The crying uncontrollably for no apparent reason. Flareups of anger over nothing. Sometimes she will lash out at us. It's hard.
When they get older, when the dysrationalia is more advanced, it can lead to more severe bouts of anger and frustration, as well as poor judgment and decision making. With dysrationalia parents sometimes feel helpless and out of control. Often, they are as frustrated as their affected children. It is a devistating condition.And this is what our daughter has. Our little girl has dysrationalia.
I'm not saying this to get sympathy, or to collect money. Heaven knows there will be plenty of time for those things later. Right now, I'm just about awareness. It's like when that one TV guy's wife got irritable-bowel syndrome and she told about it on "Oprah," there are times when you show your pain and your vulnerability if it will help other people face the challenges of their lives. We're all human here, and we all face our trials and challenges, and when it's family it's family, and family helps family, and I hope my family can help yours.Sure, I live a pretty decent life. I'm an IT Professional, I have a network of computers, and I've found I have a talent for cooking (which my wife thoroughly appreciates). I've kind of got it made in the shade. But this sort of stuff happens even to people like me. At the end of the day, we all put our pants on one leg at a time.
And I want my daughter's story to be heard. I want people to know. I want to raise public awareness.I'm tired of people having to suffer in silence, and if my daughter's story gives one family the courage to stand up and say, "We have dysrationalia, too!" then I will be happy.
It's time for those of us touched by dysrationalia to stand up on our own two feet and make our voices heard. It is time for the government to pay attention to our children, too. It's time for an uncaring society to feel our pain. It's time that we stopped looking the other way when someone with dysrationalia passes. It's time that dysrationalia stopped being the invisible diagnosis.We waited and wondered for a year, watching for signs. Countless silent families have done the same. Countless silent families have met the same fate.
But we're not going to be silent anymore.My daughter has dysrationalia.
And I will not hang my head in shame any longer.
