I am an extrovert by nature. Most of my life I have gotten my energy from being around other people. I value others’ opinions, points of view, camaraderie, and comfort. I love to laugh and have always been up for a good game night.
My husband used to wonder why I had to talk to everyone in the grocery line. Why can’t we just get some bacon without having to chat with a stranger about it? Historically, I love being around lots of people. But in the last 11 years, I have felt a shift.
When our son Jonah was born with epidermolysis bullosa (EB) in 2009, our reality changed. His dad, Matt, and I were 27 years old. We had grown up immensely in the previous year after the stillbirth of our first son, but before that we were young, married, and relatively carefree. We could go where we wanted when we wanted, and had the freedom to do as we pleased. All kids change that, of course, but a special needs child takes that life change to a whole different level.
As we’ve navigated life with a special needs child, we’ve had to learn to say yes to relationships and social events that make us feel rejuvenated and no to ones that wear us down. This has been easier for Matt, as he is an introvert by nature. But for me, it has taken time, tears, frustration, and self-reflection, which has been painful but necessary. Unfortunately, it has also required letting go of unattainable expectations and losing some friendships.
Due to Jonah’s restrictions — heat, physical limitations, dressing change schedule, G-tube feeds, etc. — we often say no to invitations. Sometimes this is to protect him from stares (if in a large crowd of people who are new to him) or from feeling left out (if it’s an activity he can’t participate in), or because we can’t make the timing work due to our bandaging routine. But honestly, sometimes it’s just because the idea of a large gathering makes us feel tired and unsafe. That’s a weird feeling for me, because I used to be all about the people.
It’s hard to explain the shift in me. I still love people and can be rejuvenated by social time and a good chat with a close friend. But I am much more selective now about who I give myself away to — mostly because many days, there’s just not that much of me left to give. I have a handful of close friends with whom I feel completely safe. These friends know our life is weird and that I’m a horrible stay-in-toucher. These few don’t judge me for my lack. They seem to know my heart, trust my intentions, and give me lots and lots of grace.
I try not to use EB as an excuse not to be a good friend. I do try. But it’s a struggle. Nursing care has helped, and Jonah getting older has made things a bit easier. But still, our lives are governed by blisters, wound care, bandage changes, tube-feeding, and physical limitations. We’re not very fly-by-the-seat-of-our-pants, and last-minute plans are tough.
I don’t want it to become too easy to say no. Sometimes there are valid reasons, but often I let Matt’s and Jonah’s homebody natures and my lack of energy govern our choices too much. In many ways, it was healthy to make adjustments in our lives. But if I’m being honest, sometimes I just don’t want to take new risks (which goes against everything in my Enneagram 7 nature!).
I love the handful God has given me and trust my “people” completely to give me the benefit of the doubt. They are “ride or die” and stand by me no matter what. I can entrust my heart and limited capacity to them and know that they’re all-in. And I’m so grateful. But I do know that there are people out there that God has called me to minister to and love on who are outside of my safe zone. Just when it gets too comfortable saying no is probably the exact time we need to learn to say yes. After all, we’re meant to live in a community.
And it’s in this community that we’ve found support, love, compassion, prayers, and challenges that have helped us to grow. It’s in the risk-taking that we’ve found new lifelong friends and different kinds of adventure. And it’s in the stretching that God is able to use us for his purpose.
Certainly we are not made to live this life selfishly. So, when I’m tempted to pull inwardly, I assess the validity of the feelings, consider the healthy choice, and act accordingly. And often, that looks like answering the phone call, making the plan, and stepping out the door.
Taking the risk. Even when it’s hard.
Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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