I remember my son’s first allergic reaction. I was confused, concerned, and unsure. I’m pretty sure that’s the understatement of the year.
I didn’t understand what was happening – to the point that I called my doctor’s nurse line and said, “Hi, ummm … I think my son might be having an allergic reaction to something he ate; what should I do?”
After that first reaction, we went through the appropriate diagnostic testing. I’ll never forget how I felt after they poked his back 26 times with little medical devices that looked like thumbtacks. And I’ll never forget how I felt when the nurse came in and took one look at his back and said, “Wow! Look at his peanut – I’ll be right back with an EpiPen trainer because you’ll definitely need to carry one from now on.”
She left the room quickly and I blinked, trying to keep the tears from falling. Trying desperately not to let Zachary see how this news hit me. I felt alone. I felt like we had been handed a death sentence. I felt like my son would never be able to live a full life.
The grieving process for a parent whose child has been diagnosed with life threatening food allergies may not seem at all logical for those looking from the outside in. But I can guarantee you, it is real.
In the midst of learning how to live a full life in spite of severe food allergies, I’ve encountered situations that have shown me how easy it is for us as humans to prescribe a response and a solution to others in their time of need. And I’ve also learned that sometimes prescribing solutions doesn’t allow others to work through the feelings they must feel if they are going to work through the grief and find their way to a healthy, strong place.
For parents receiving a diagnosis of severe food allergies, the grieving process comes in waves. We battle sadness, anger, and anxiety. We feel overwhelmed and paralyzed by it all.
It’s not just about the steep learning curve we face in keeping our child safe at home, at school, at restaurants, and out there – wherever. It’s also that sometimes we feel isolated, and some of us even lose relationships (for the short-term or long) because friends or family members we love and trust don’t fully understand – or don’t try to understand – our “new normal” and why we are so careful.
While we adjust and learn, we are called Helicopter Parents; we are accused of hovering, coddling, catering, spoiling and overprotecting. We are admonished to “loosen up” or to “just feed him a little bit to help him over it.” Instead of understanding and support, we encounter resistance and judgment.
All the while, we are grieving the loss of freedom in a life we anticipated for our child, praying his life is still a long and productive one, and learning how to navigate the ins and outs of our new normal.
What I’ve learned through the years since Zachary’s diagnosis is this: educating myself, surrounding myself with a tribe willing to walk the road with me, and the passage of time all lighten the load and the grief becomes less overwhelming and more an occasional heart-tug.
The grieving process is real, but it’s not forever. Learning to navigate life after a severe food allergy diagnosis is possible. It’s a new road, but it doesn’t have to be ridden with anxiety, and it most definitely does not have to be lonely.
In the midst of it all, I’ve found strength and a desire to learn that I didn’t know I had. I’ve seen how resilient my son is in less than ideal situations, and I’ve had opportunities to use those moments to remind him that understanding how to exhibit both kindness and compassion toward others go a much longer way than knowing long division in third grade.
We’ve found our own way. It took a while, but we did. It’s not always an easy path, but it’s not as overwhelming as it once was.
In the meantime, though, I learned a lot about treating others in hardship and it can be summed up in one small saying: “Handle With Care.” And that’s just what I intend to do with others, every day. Because who knows the difficulty they face?
It’s a little thing, but it makes all the difference in the world to one in need.