Redefining Independence


Sometimes the word “independence” can be misinterpreted. For example, with EB families, so much of what’s done to ensure the safe, reliable and consistent care of a child or other loved one diagnosed with EB is hinged upon the collaboration and dependence on multiple people who contribute to different steps within the care process.


But that doesn’t make those families any less independent. They are still essentially planning for the care of their child and using whatever means possible to offer their son or daughter the most comfortable and fulfilling life, even when it may feel sometimes as if they are operating all alone.


It can be difficult to reach out for help. We can become so used to creatively managing on our own to come up with solutions when we can’t locate them elsewhere. This often leads us to count on only a handful of key people who fully comprehend the magnitude of the impact epidermolysis bullosa can have on an individual and a family.


As someone who has filled those shoes and will always consider herself an EB parent, I can confirm that you want so much as a parent to be able to stand on your own and care for your child. You want to show your loved ones and anyone who may not have faith in you and your child’s livelihood that you are strong, determined and taking matters into your own hands while facing what can appear to be an uncertain future.


However, very so often there comes a time when a particular resource or helping hand becomes necessary to grasp and it is imperative for any parent to recognize how critical incorporating a system of collaborations and shared efforts can be for the health and well-being of his/her child. And no, it does not take away from your role as primary caregiver and decision-maker for your child, but it capitalizes on the very best resources that are available – whether it’s knowledge, supplies or support of some other kind.


So though it may appear to be an oxymoron, you can remain independent in determining your plan for living with EB and managing its impact on your household while still depending on others and embracing their experience and support offered to you locally or from afar. It doesn’t make you any less independent as a mom or dad. It simply gives you more tools to be the best mom or dad possible.

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