July 31, 2017 - I have long outgrown the skewed view of the universe...

Today is the 31st anniversary of my husband and my marriage. It is remarkable to me to think of that day, so hot and humid, 31 years ago and where we are now.

Sometimes people ask us if we feel badly that our union literally resulted in our kids having a disease - because their disease is autosomal recessive, we are 'responsible' for it. In an autosomal disease, each parent passes on a gene with a mutation, and not the gene without the mutation (we each have one of each). So yes, Pat and I each passed on an ABCC6 gene with a mutation in it. Two mutations, and no 'normal' copy of the gene, gives our children pseudoxanthoma elasticum (PXE). Not only did we do this once, we did it twice. 100% of our kids have PXE.

I am do not feel good or happy that we passed these genes on. And, I also don't feel badly about it either. These seemingly contradictory feelings are allowed - in fact, what is often called confusing feelings, are multiple different feelings.

There was a terrible moment (that lasted weeks) in which I couldn't comprehend the world having this glitch or bump in it. I kept thinking that we would be able to reverse time and not have to accept this piece as our reality. That never happened - time marches on - and here we are in 2017.