How My Marriage Changed After a Disability Diagnosis

Fear, shock, anger, grief, sadness, and devastation were big themes in the moments following our daughter’s birth. Callie was born on Halloween. She arrived two months ahead of her due date with a surprise diagnosis of Tetralogy of Fallot and a lower limb deficiency. After the initial reactions of fear–both for her health and well being, images of our marriage changing forever followed.

Parenting in and of itself is HARD. Adding in a disability diagnosis which comes with a huge financial undertaking and I felt as if we’d been hit by a train. Or a bus. Or several buses. All the plans my husband, James, and I had for our future years suddenly felt out of reach and our financial plans were drastically changed with her medical expenses and long-term health care plan. It was so much to take in and I felt completely overwhelmed.

Days after Callie’s arrival, we were required to speak with a chaplain at the hospital. At first, I had zero clue what this person was supposed to offer me. Did he have some magical way to heal my daughter’s leg? Did he have some profound inkling about how to pay the mounting medial bills that were stacking up? It wasn’t until we met with him–sobbing in the quiet dimly lit corner of the chapel, that it was revealed. The chaplain shared that families loving children with a special needs or disability diagnosis are 80% more likely to face divorce. He told us we needed to make sure we had out “hearts and minds right” and commit to one another in a totally new way. He shared some tactical advice–explaining that we tend to remember in great detail big life events and the days following. He said that potentially our reactions to each other in this very moment in time would be the story we would hold for the rest of my life and depending on that–could make this more or less traumatic. He said from this point forward, our marriage would be different.

And he was absolutely right.

Here are four lessons I learned about marriage after my daughter’s disability diagnosis.

Express your feelings

Some people internalize disappointment, sadness, grief, and pain. This chaplain urged us to express our feelings, which helps build intimacy in this shared experience instead of dividing and isolating. We took this advice to heart. We truly walked through this experience together, processing the changes to our future and shifting the visions we held of what we expected to the precious miracle daughter we were gifted with.

Let others in

I needed my husband. I needed him to support, love and care for me. I needed to have the chance to support, love and care for him during his emotional process. We were both greatly humbled by Callie. Our walls were broken down and we began engaging with each other in a deeper, more meaningful way than ever before. I’m not advising anyone to go through a deeply traumatizing life event to get closer to your partner, but I can say that this brought us closer together in an infinitely, impactful, and solidifying way.

Don’t expect your partner to read your mind

One of the biggest lessons I learned was getting extremely good about asking for what I needed instead of waiting until my husband would pick up on my emotional cues. He can’t read my mind nor should I expect him to read mine!. We both were very good at having clear, concise, and caring conversations with the other to ask for support, space, compassion, relief, or a shoulder to cry on.

Expect evolution

As time moves forward, we will need to evolve with the demands of our family and tend to our marriage in new ways. Honestly, as I look at our story, I feel Callie brought our marriage into focus in a way it wasn’t prior. It placed a weight on its success or failure that I was naïve to in the past. It also brought a newfound sense of need to my relationship with my husband. If you’d have asked me about marriage prior to having Callie, I would have said that our relationship was a choice versus a need in my life. I have always prided myself on my sense of independence and ingenuity in the past, but with Callie, my entire perspective changed.

I need him. Not just because it’s necessary for the success of our family, but because he is my safe space, my best friend, partner, and confidant in a much deeper way than ever before. This is a truly unique parenting experience, one that few will ever get to understand. The emotions, joys, heartache, heartbreak, ups, downs, and all of the perfectly imperfect moments in between that come with it. He has seen me on my knees howling with grief. I’ve seen him absolutely wrecked with only a wall holding him up. We understand one another in this shared experience in a deeply intimate and personal way.

And as we move forward, we still believe our marriage is a gift as long as we continue to look at one another as that safe space in the chaos of this life.