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.

And so, when I think about my husband and my contribution to the genetic makeup of our kids, I am very very happy to have created these babies, now adults, with him. With all of the other joys, this too is a joy. I have long outgrown the skewed view of the universe, the view that there is a 'right' way, that there is a 'normal', that we have somehow deviated.

I feel strongly that we can best live the life we have been given by turning toward all of it. It is that simple. There is no normal and abnormal, no mutated or not. It just is. It is what it is. And, when I look at the whole of the genetic mess we passed on each time, I take delight overall. Wow, our kids are amazing, you should meet them!

Sure, I am fearful, anxious, joyful, wondering and all the rest. I am learning to be curious about it all, and not to face it with judgement. Who needs that on top of all of the other challenges?

So, tonight, when we join with our whole family and close friends, and celebrate our union 31 years ago, we will celebrate lustily, so grateful for all of the gifts, all of the paths we have taken, and the joy of our children as fruit of that union. We will celebrate the enormity of our blessings.