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Transformations: Things that change after a Diagnosis

world map and compass

Since my daughter’s diagnosis many things in my life have transformed. It’s not only my hopes, dreams, and plans for the future that are different now. So many other things have changed as well. My feelings about myself and my place in the world. My career. My friendships with parents of healthy, neurotypical children. My marriage. My feelings about growing up, growing old, living, and dying. The way I view my body. How I measure “good” days and “bad” days. What I consider to be “real” problems. How I define intelligence. My capacity for love.

Not all of these changes are for the bad—not by a long shot. But they are changes, nonetheless, and very significant ones. It can be overwhelming to experience their onset, especially if it happens within the span of a few months, as it often can. How can one person possibly be expected to adjust to all of this? How do we know who we are anymore if everything around us and within us is transforming? How do we explain any of these transformations to someone not experiencing them?

I suspect the breadth and depth of how our lives change when we become special needs parents is why our grieving process is so complicated, so full of twists and turns and ups and downs. Sometimes I don’t even know what I am grieving. I simply have a feeling of wrongness, a sense of difference. How can this be my life? Is this really happening? Where did everything go? What do you mean, I can never have any of it back?

If I had to explain what this feeling is like to someone, I would do so in terms of place. Many people are familiar with Emily Kingsley’s essay Welcome to Holland. In it, Kingsley explains that becoming a special needs parent is like getting ready for a trip to Italy, only to touch down in Holland for the rest of your life. She explains, quite eloquently, why it is important to enjoy all that Holland has to offer, rather than focus on what one could have had in Italy. This essay is useful and has withstood the test of time so well because geography is an excellent metaphor for emotions. Unfortunately, it’s much easier said than done to stay in one place and be content with it.

I really struggle with this. Some parents know from the beginning that their child is different. Those who received their diagnosis from birth (or even before) realized right away they were in a new place. But some of us, like me, thought for a time that we were in Italy. We enjoyed being there. It wasn’t perfect, but we liked it and were happy to stay there. Then, suddenly, we had to move. The deep-seated grief we feel comes from having to make that unwanted move, but also from remembering what it was like to live somewhere we had chosen, if only for a little while.

There’s another geographic metaphor I often come back to. Years ago, my husband and I moved out of our first house and bought one in a different part of town. Sometimes, very occasionally, I need to return to that part of the city. As I drive the streets I once drove every day and pass by the house that once held the fullness of our lives, I become nostalgic. Most of us know the feeling—that pull on our heart, that strange sense of unease as two different moments of our lives collide. That was my life, and I liked it, but I can never go back. I will never again be the person who lived like that. The grief I feel when I think about life before my daughter’s diagnosis is similar to that feeling, but infinitely magnified. It’s centered on everything we used to have, the people we used to be, the days we used to live. Boiled down to its essence, it is grief centered on before.

I miss so many things from my before. The me who had a satisfying job and an identity that didn’t center around my child’s mutated genes. The close connections I had to friends as we discovered the joys and struggles of parenthood together. The feeling that the universe metes out justice and suffering in a way that makes some kind of sense. All of these things are gone now, and there’s no knowing if or when they will come back.

Many people don’t understand this particular quality to our grief because a lot of the changes we undergo as special needs parents are invisible. It’s easy to grasp the concept that we don’t have the child we expected we would. That’s immediately apparent and often quite visible. But the fact that our friendships, careers, marriages, identities, and worldviews have also changed? That isn’t necessarily evident. We also don’t go around advertising these changes. Why would we? They’re deeply personal and difficult to articulate. Yet these silent changes are often what separate us from the people around us. They want to understand our new reality, but really how could they? We no longer live in the same place. We are no longer the same people.

I know this sounds bleak and lonely, but it doesn’t have to be. I have friends who have gone through their own difficult times and somehow always know the right things to say. There are other parents who have gone through transformations of their own and have been kind enough to talk to me about it. Most of all, I have my husband—the only other person in the world who truly knows how much and in what ways I am changing. He understands because he is changing too. A bomb has gone off in our lives, forever altering our landscape, but there’s so much comfort in not being alone as I wait for the dust to settle.

It is a painful truth that change can hurt. It’s never comfortable to start a new life or to become a new person. This is even more difficult when we didn’t want the new life to begin with. But we can grieve our before and still find the good and the beautiful in our after. We can miss the people we were but be proud of the people we are becoming.

We are stronger now. We have more perspective on what truly matters in our lives. We love in different and deeper ways. We have learned to let the unimportant things go. We earn and appreciate our good days. We shoulder our bad days in ways we couldn’t have imagined possible. In the end, the best thing about our newly transformed life is that we are growing and changing with it.

In what ways have you changed since you became a special needs parent? How is your life different now? How do you feel about these changes?

Leave a comment and tell me below.


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