Personal Story: This Is How My Marriage Changed After a Special Needs Diagnosis

Fear was a big theme in the moments following our daughter’s birth.  Rory was born May 2, 2017. She arrived with a surprise diagnosis of Trisomy 21, also known as Down Syndrome. After the initial reactions of fear for her health and well being, images of our marriage changing forever followed.

Parenting is hard on a marriage and that light at the end of the parenting tunnel grew dim following her diagnosis. All the plans my husband, Evan, and I had for our golden years felt out of reach, our financial plans were drastically changed with my exit from work, her medical expenses, and long-term care. We had made some sacrifices in our early years of marriage that have provided us with the ability to make it in the now during this change, but it’s not what we envisioned those sacrifices being used for. It was a lot to take in.

READ: To The Mom Whose Baby Just Received a Special Needs Diagnosis

Before we left the hospital after Rory’s arrival, we were required to speak with a grief counselor. In those first few days when we struggled, it was the best thing anyone could have done for us. The grief counselor set us up for real success by explaining that families loving children with a special needs diagnosis are 80% more likely to face divorce. He told us we needed to “get our minds right” and commit to one another in a totally new way. He supplied my husband with wonderful tactical advice, sharing how women remember in great detail big life events and the days following. He said that Evan’s reaction at this moment would be the story I hold for the rest of my life and could make this more or less traumatic. Here are four lessons I learned about marriage after my daughter’s special needs diagnosis. 

 

 

Express your feelings

Most men internalize disappointment, sadness, and pain. This counselor urged my husband to express his feelings, which helps build intimacy in this shared experience vs. division and isolation. Evan 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 daughter we were gifted with.

 

The grief counselor set us up for real success by explaining that families loving children with a special needs diagnosis are 80% more likely to face divorce. He told us we needed to “get our minds right” and commit to one another in a totally new way.

 

Let others in

Years ago, when our son was born, my husband and I went in opposite directions. I was consumed by new motherhood and didn’t leave much space for Evan to feel he had a place. With Rory, there was no room for me to be “miss independent.” 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 Rory. Our walls were broken down and we began engaging with each other in a deeper, more meaningful way than ever before.

 

 

Ask for help

I have learned how to speak less about how I felt and more about what I needed vs. waiting until my husband would pick up on my emotional cues. In my experience, I feel a lot like a tea kettle as a stay at home mom, managing Rory’s unique needs along with her schedule while also juggling my son and general family care requirements. It causes a lot of stress to build.

 

Drop the mom guilt

I now know how important it is to have days where I am away from those responsibilities and the noise of young children. I try to take a day (or even an hour) where I go somewhere quiet to write or run errands without the kids in tow. It gives me perspective and allows space to miss my family. If men want to go do something they say it, rarely do they feel bad for going. This honest communication and dropping the mom guilt has been a big win for both our marriage and my emotional health.

 

 

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 Rory brought our marriage into focus in a way it wasn’t prior. It placed a weight on its success or failure that I was naive to in years past. It also brought a newfound sense of need to my relationship with my husband. I have always felt our relationship was a choice vs. a need in my life.  I know that sounds harsh, but I prided myself on my independence in the past.

I’m in a season where I need him. Not just because it’s necessary for the success of our children, but because he is my safe space, my best friend, and confidant in a much deeper way than ever before. This is a unique parenting experience, one that few understand the emotions, joys, and strains that come with it. Evan and I understand one another in this shared experience in a personal way. It is a gift as long as we continue to look at one another as that safe space in the chaos of this life.

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