This Is What It's Like To Find A 'New Normal' After A Life-Changing Diagnosis

During a recent staff meeting at work, we each took a moment to share what we were most thankful for. A million things came to my mind, and I tried to figure out how to narrow it down for my moment of sharing. And then I realized there was a common theme to much of my gratitude…

My two-year-old daughter was born with a heart condition, and later we received a diagnosis of a chromosome deletion. When we would share the news with people, they’d often use the phrase “new normal.” As in, “you’ll soon figure this out, and eventually, it will become your new normal.”

Whenever people said that, everything inside me screamed that it wasn’t true. That she was our first baby, and we’d never even had a chance to find our “normal” as parents and a family of three. How were we supposed to find a “new normal” as a family with special needs? How could all of the procedures and therapies be “normal?”

Everywhere I looked I saw families that I assumed were “normal.” Families who weren’t spending weeks in the hospital at a time. Families who were just working on getting their sleep schedules down, changing blow out diapers and undergoing the struggle of bottle versus breast. That was normal, right? At least that’s what I’d always imagined this time would be like.

But the months have passed — 24, to be exact. Some months better, some months worse. We’ve had more tests, and received additional diagnoses. We’ve acquired new doctors, and learned about new specialties. We’ve asked for second and third opinions, researched, brainstormed, and worked through our circumstances with trial and error. And just like any family, we’ve seen our fair share of victories and disappointments.

And you know what?

Sometime in the last couple of weeks I’ve looked in the rearview mirror and realized that we have, indeed, found a new normal.

But it doesn’t look exactly like I thought it would. Somewhere in my mind I thought our new normal would look more… well, normal. That it would look like everyone else, or that it would look closer to my expectation of parenthood. But that’s not what it’s about.

It’s about being comfortable in our own skin.

It’s about knowing what to expect in our day-to-day and accepting the fact that sometimes we can expect curve balls.

It’s about being committed to my daughter’s best, yet cutting ourselves some slack when we are not satisfied with the current situation, knowing that there is always another day to make progress.

It’s about being able to be in public and feeling worthy and accepted, not self-conscious of our family’s differences.

It’s about scheduling our appointments and therapies into our routine the same way that we schedule trips to the grocery store or workout sessions at the gym.

It’s about finding a schedule and activities that work for our family.

It’s about knowing that some days just suck. But also knowing that the next day has potential to not suck.

And for us, it’s about realizing that the purpose and plan for our lives is so much greater than we ever knew. Although we may not be the “picture perfect” family that I’d dreamed of, my daughter’s life is an inspiration to many. Her strength and courage in the face of adversity touches so many people — not only those with special needs, but anyone who is going through a challenging time. And I realize that to be a blessing to others is the highest calling. Everything else pales by comparison.

And that’s our new normal.

Let me be clear: normal does not mean that it’s all sunshine and roses at our house. We still have some rough days, sleepless nights and feelings of uncertainty. But normal does mean that coming back to neutral is easier and that we allow ourselves to feel content in our current situation versus wishing for different circumstances.

I would encourage anyone who is walking through a valley — who finds themselves in a place they never expected — to have hope. I can’t pretend to know what you’re going through, but I know that this is not the end of your story. And although the future may not be what you expected, it doesn’t mean that it won’t be purposeful and fulfilling.