When Special Needs Parents Have Unexpected Needs of Their Own

Two weeks ago, I kissed my husband, David, goodbye and looked on as two nurses wheeled him back to the operating room for surgery on his spine. Years of being rough on his body through athletics and other adventures had left David with chronic back pain.

In the weeks preceding the surgery, I had watched his quality of life deteriorate as the pain became more persistent and severe. His right leg had become weak; just walking up or down the stairs was causing him to fall. It wasn’t emergency surgery or even altogether unexpected, but everything had unfolded much faster than we had planned.

As the nurses and David turned the corner towards the unknown, I felt helpless and uneasy. I settled into a seat in the back of the crowded surgical waiting room and gathered my thoughts in an effort to get to the root cause of what was making me feel so overwhelmed.

First, I recognized I was worried about my husband, which was reasonable, given the circumstances. My background as a medical professional in the specialty of pain management afforded me a reasonable amount of knowledge, so while this was major surgery, it wasn’t foreign to me. I knew what to expect physically in terms of his recovery. There had to be something else making me feel so unprepared.

I began to recognize I was carrying a tremendous sense of guilt. This was the first time in months that I’d actually sat down and simply considered David! In the time that had passed since our youngest daughter, Piper, was diagnosed with autism, life had been a steady stream of appointments with specialists, therapy sessions and IEP meetings. I hadn’t failed to consider him out of a lack of empathy. I had just been so busy living life one day to the next that the significance of what he’d been feeling physically had been lost on me. Until his pain became unbearable, I think it had been lost on him, too.

Finally, I realized what was truly terrifying me. It was the uncertainty surrounding the next two months of our lives as parents of a child with special needs. I previously shared a story about how David’s strength made him a catalyst in our family’s journey. Everything we’d accomplished had been the result of teamwork. What would happen, then, with the team captain on the sidelines? I was overcome with fear because I was second-guessing my ability to fill the void during his period of recovery. I was scared I lacked the physical strength to handle Piper’s meltdowns. I was frightened we wouldn’t be able to connect with her emotionally in terms of this transition. How would I reach out and explain to her, in a way she’d understand, why Daddy couldn’t hold her?

Instead of continuing to question my abilities, I resolved to conquer this challenge the way we’ve approached each challenge to date — one day and one situation at a time. We’ve learned through Piper that daily life often doesn’t go as planned. I couldn’t expect this situation to be any different. Ultimately, I gave myself a pep talk, and I felt confident in my resolution that the only way to face uncertainty was to take it in stride.

As I reflect on that day two weeks ago, I see my worries were mostly unfounded. Life hasn’t fallen apart at our feet, and David is recovering well. While I worried Piper would have a hard time adjusting, she’s actually taken to having Daddy here at home after school. He can’t lift her, but he can cuddle, and she’s soaking up every minute of it.

The most valuable lesson I’ve learned is that parents of a child with special needs can sometimes have unexpected needs of their own. We spend so much of our time advocating for our children that we forget they need, more than anything, for us to be at our best. I know this has been difficult for David, physically and emotionally, yet he’s demonstrated, once again, that he has more strength than I may ever truly realize.

We weren’t any more or less prepared for this surgery than we were to be parents of a child with special needs. In that statement lies an important message for all parents alike. You don’t have to be able to predict the future to make it beautiful.

Follow this journey on drivingthestrugglebus.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.