Cast of Characters

March 12, 2019

I imagine it would be helpful to give a brief description of the main players in my journey, to give you some info before you dive in and start swimming upstream with me.

Cameron: my husband of (almost) 24 years (we were literal babies when we married). He has been my rock when I needed a rock, and he has also crawled alongside me when fighting gravity was too much of an effort. We are knitted together by what we have experienced these past two years.

Charlotte: our older child, age 18, whose birth threw me into the deep end of the motherhood pool (sticking with the water metaphors). Why, why did I insist on an unmedicated birth experience?? Never, never turn down an offer of pain medication (especially when your birth partner/spouse was himself 10 lbs. at birth- hello foreshadowing?!). Actually, the ironic thing is that they offer pain meds for the birth, when the most painful thing about having a baby is all the parenting and stuff that comes after delivery. . .

Ollie: our younger one, age 14. Ollie’s birth came exactly one month before his due date, and should have given me a clue that he would be the one charting his own course, thank you very much. Any mere mortal would get carsick just trying to keep up with him as he forged his own way. So many zigs and zags and loop-de-loops, big rolling ups and downs enough to guarantee you’ll lose your lunch. To be fair, he has faced too many big and scary roadblocks along his way, including the fact that he was born into the wrong body (a female one). Ollie didn’t fully come to understand this until middle school; by then he carried with him diagnoses of ADHD and anxiety, along with the bonus prize of a genetic condition– the hypermobile version of Ehlers-Danlos Syndrome. All those cool circus tricks that centered around him being freakishly flexible gave our pediatrician (one of the first heroes on our journey) a glimpse into what might lie ahead for Ollie. He gently suggested we start the process of looking into EDS, and after scaring ourselves senseless with an overly thorough Google search, we began reaching out to geneticists, orthopedists, physical therapists, pediatric opthamologists and cardiologists. Ah the good old days, back when we thought things were “so hard.” We were caught up in our own little whirling eddy of grief and fear and worry, and no matter how fast we swam we weren’t ever going to be fast enough to escape the inevitable: gender dysphoria + adolescent hormone changes + ADHD + anxiety + a genetic condition with no cure=

THE END OF LIFE AS WE KNOW IT.

To learn more about Ehlers-Danlos Syndrome, visit https://www.ehlers-danlos.com

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