Parenting

A Husband & Wife Approach to Receiving a New Diagnosis

My wife-the kind, caring, loving, beautiful, spiritual, peaceful and all-around wonderful woman-has said this to me on more than one occasion: You are either delusional or so positive that I want to punch you in the face. It generally happens in those awful moments which most parents of children with special needs experience.  We just had a “routine test:” the nurse made a funny face which she tried to hide, then went and got a doctor who looked at the same information she just looked at. He looked at us, and looked back to the ultrasound, MRI or blood test he was just looking at, and then softly says something like “this is probably nothing, but we want to investigate and get more information about (insert scary sounding vague anatomical words).

A New Diagnosis

Most recently this happened to us when my daughter Ellah (Ellah has a condition called Agenesis of the Corpus Callosum or ACC) got an ultrasound on her stomach due to some poopy problems (yah, that was the nicest way to say it). They found she has another rare condition called Cavernous Transformation of the Portal Vein. We don’t really know what all that means for her yet, but are working on figuring it out.

Men are From Mars Women are from Venus

When we left the specialist’s office, my wife was crying (rightfully so) and I looked confused by her being upset. I asked her why she was upset and she said that she was concerned that Ellah could choke on blood in her esophagus and that’s terrifying! I agreed but replied “there are so may IFs that have to happen for her to get hurt. IF the CTPV is significant, and IF blood backs up in her veins, and IF her veins can’t take the pressure, and IF it bleeds (then starts the bad stuff) , and IF it bleeds it bleeds into her esophagus, and IF we aren't around to notice and call for help… I don't want to carry that any further – but there are so many IF’s that need to align for bad things that we shouldn't worry. But what I was trying to tell my wife was that we need to plan for the worst, and make sure she gets the best medical attention possible so we can make the best informed decision possible. But then we hope for the best, and live our lives like normal people. That’s when I got the ole’

"You are either delusional, or so positive that I want to punch you in the face"

Am I Delusional?

It got me thinking – Am I delusional? Am I lying to myself and my wife by thinking this way? Or in the other direction, do I have a positive attitude that’s qualifies me as having full flight from reality? What I realized is I’m not delusional; I’m the very lucky half of a well balanced relationship. Let’s not sugar coat this, raising one child is hard, raising kids is harder. Raising a child with special needs is 3 full time jobs and each of them is underpaid. I’m lucky enough to have a partner to do this with who makes up for where I’m lacking. She keeps the house organized, everyone fed , medications dispensed properly and the crew on point. While my (few) strengths cover her weaknesses. I try to bring humor, levity, and positivity when times are hard because that’s my job! If I get punched in the face for it every once in a while I’m ok with that.