I remember when the geneticist told me that there was good news and bad news regarding my son's diagnosis. It was horrible.
He had been exhibiting symptoms of a genetic disorder, unbeknownst to us, his regular doctor and the ER doc who treated a bug bite, and they questioned us with suspicion about hitting our son on his head because x-rays showed "skull fractures."
The doctor told us that she knew we weren't abusing our son (we knew we weren't either so this was no new revelation) but he had a storage disease that was genetic. The x-rays probably detected some of the storage of the muccopolysaccharides (sp?) in his brain.
That was the good news?!?!
The bad news was that it was untreatable and incurable. How did I react? I wrote the check for the visit, scooped up my baby into my arms, tucked him into his car seat and drove to my husband's work, feeling numb the whole time. I was in shock.
When I told my husband what the doctor said, well, that was when I broke down and cried. We looked at our adorable child and couldn't believe that one day, he wouldn't be here with us. Shock. Disbelief. Sadness. Fear.
It took a while before we could hear what else the doctor had to say but it was mostly about palliative care at that point. There was a lot they could do to help him and they did for which we are eternally grateful.
