This is Roger and Amy Lockwood and they are RESILIENT.
CONTENT WARNING: The I Am Resilient Project provides an open space for people to share their personal experiences. Some content in this post and on this website will include topics that you may find difficult.
Describe the situation where you had to be resilient:
Resilience is a prerequisite for chronic illness. As it turns out, my son and I have both.
Amy’s Story
After 15 months of aggressive investigation, weeks before his 2nd birthday, we got my son Roger’s diagnosis: Ehlers-Danlos Syndrome.
A rare genetic disorder, EDS affects all the connective tissue in the body. It presents as hypermobile joints with frequent dislocations, gastrointestinal problems, mobility issues, and chronic pain. Sounds fun, right? It’s also lifelong, there’s no cure, and it’s degenerative…meaning it gets worse.
When we started investigating Roger for EDS I dove headfirst into articles, medical journals, and blogs describing the many ways it presents in different people. Not only did I recognize so much of what my son’s body was going through, but I started seeing surprising trends – EDS could explain multiple “medical mysteries” I’d experienced throughout my life that I’d previously thought were unrelated. Suddenly they could all be explained by a connective tissue disorder. Our geneticist made it official. Roger was diagnosed with Hypermobile EDS – and so was I, ages 23 months and 32 years respectively.
Getting the diagnosis came as more of a relief than anything. We finally had an answer to Roger’s mounting symptoms, and reasons for my own complicated medical history.
But with answers come more questions. With rare disorders comes a lack of research and resources.
As a family, we have to surrender to the unknown and try to manage what we can control. We support our weakest joints with bracing, work to build muscle and prevent injury. I am learning how to be a relentless advocate – finding the right doctors, therapies, and support for all of us.
This is what our resilience looks like:
- Roger learning to walk despite low muscle tone, hypermobile ankles and balance issues. With months of physiotherapy and leg braces to stabilize his ankles and knees, not to mention so much hard work and determination on his part, Roger now RUNS!
- Consciously making days with specialist appointments fun. Yummy lunches in hospital cafeterias, races through the lobby and an extra ride on the elevator just for kicks!
- Starting my own business designed for working remotely with flexible hours to allow for constant appointments, injuries, and illnesses.
- Roger smacking his own thumb back into place when it dislocates, then returning to playing with his trucks.
- Ignoring advice to wait for Roger’s speech to come and learning American Sign Language so we could teach him how to communicate and ease his frustration, then Roger learning ASL so quickly he signed 3-word sentences within 2 weeks.
- Roger finding joy in everything.
- Yelling in the underground hospital parking lot for the joy of hearing his voice echo, excitedly pushing the button on the elevator, smiling and helping the doctor put the stethoscope on his chest.
- Roger being a regular, mischievous toddler.
- Constantly pushing boundaries, learning, and being absolutely hilarious.
How did you practice resilience when faced with this challenge?
Waking up every morning and choosing to love and appreciate the bodies we have, advocating for their care, educating others, and celebrating inclusion. This is how we demonstrate resilience.
Please share one piece of advice for people who are going through a similar challenge.
Time together as a family can be just as beautiful in a doctor’s waiting room as it is around a dinner table.
Are you ready to share your story of RESILIENCE? You can do that HERE.
