I can’t speak to what it’s like to live with vEDS, because it will never be my lived experience. But I can state that I have made it my goal to know everything I can about her condition: how to recognize, manage, and treat symptoms and how to navigate the challenges in healthcare that living with a rare condition impose on her. To everyone else, when I say my daughter has a rare condition, they say things like, “so you just manage it with drugs, or scans”? If only it were that simple. There is no cure for vEDS and there is only anecdotal evidence that some treatment might help prevent major medical event, but even those studies are small and riddled with errors, leaving more room for fear and apprehension.
For months, when I wake up in the morning, I am stricken with momentary panic as I call for my daughter to wake up and get ready for the day, I pray she will respond. Some vEDS people have an event and die in their sleep, even at an early age. vEDS is a very tricky condition and it can strike at any time and without any seeming reason. So, every ache and pain gives me anxiety. Is this dehydration? Is it normal? Does it warrant an emergency room visit?
I would like to say that after a year, it gets easier, but honestly, it really doesn’t. The feelings of constant fear have dissipated, but the anxiety of making the right decision to spend hours in the ER or simply rest never gets easy. You’re juggling school schedules, trips, work, and life…there’s not room for spending 6-8 hours at the ER on a school night. Much like parenting is, you never really know if you are doing it right- with parenting with vEDS is the same question, but there is no forgiveness if you choose incorrectly and your child dies.
Shifting gears a bit, I would like to acknowledge how grateful I am be have access to the tools, research, and support community to help us navigate this experience. Having my daughter diagnosed while she still lives at home and we can learn how to effectively communicate and listen to her body together, while being supported by family is huge. Living in a time, where AI is helping advance medical research and literacy leaps and bounds is nothing short of a miracle. Having access to the Mayo, where there is a specialist in connective tissue conditions is so helpful for navigating, not only the big aspects of vEDS, but the day to day concerns, is nothing short of a miracle. Most doctors we interact with, understand very little, if anything at all, about vEDS. So, having a resource 90 minutes away is nice.
Every day, I am reminded of how wonderful it is to be alive and I am so grateful I get to be a mother to my two, amazing children. Being faced with mortality really does give you an opportunity to be grounded in the moment. It’s very easy to live in the land of, “what if….this” and spiral into the world of terrible future possibilities. But, when I remind myself that right here, right now, we are good, I cling to that and appreciate every moment we have together.