Today, I forgive Eva’s genetics, and Miller Dieker syndrome.
I count my blessings there has not been much to forgive on this journey, as we’ve been treated with such dignity and respect. Early on I forgave myself and my husband for any decisions we made for Eva because it was all out of love. I try to forgive people pretty quick for tacky comments. It does me no good to hold on to grudges. I’ve got a lot of healing to do, and that energy is not going to support it.
Eva had a duplication on Chromosome 1 AND a deletion on Chromosome 17 which caused Miller Dieker syndrome (MDS)—one rare girl. Making her very existence pretty amazing. Eight months ago I wouldn’t have understood any of this.
It’s nobody’s fault, it is what it is, but I hate MDS. All the precious babies and all the precious families that have to endure such suffering and heartache over this genetic condition that strips life away one seizure at a time. I despise that it took my beloved baby from me. That I have to have this understanding of genetics, and know how lucky each of are to walk around with intact chromosomes. One little break can do so much damn damage.
As an historian, I did a little research on James Q. Miller and H. Dieker, the two doctors who described the syndrome. This was the 1960s, long before genetic testing. Their names make me cringe. I can’t imagine that’s what these doctors wanted when they worked on this. They were revolutionizing medicine and bringing answers to families with complicated children. Miller has a medical facility named after him. That seems like a more fitting legacy than a nasty genetic condition.
Somehow putting faces to this name that I associate with so much heartache helped me release a bit. These were real human beings, and without Miller and Dieker we wouldn’t know so much about this rare syndrome today.
I’ll end on this note:
“For life and its loveliness
And all of its ugliness
Good as it’s been to me
I have no enemies.” -The Avett Brothers