First I wrote about the shocking diagnosis and raising awareness. Then I wrote about freeing myself from guilt from being a vocal advocate for the heart community.
This year feels different because for the first time, we’re able to celebrate a healthy and stable little guy. Our son passed his semi-annual cardiology appointment recently with flying colors (and lots of tears). But the one topic I’ve avoided is my marriage.
How Heart Disease Changed My Marriage
The Impact On Our Marriage
I would be remiss not to talk about how having a child with a life-threatening and chronic illness impacted our marriage.
Before our son was born — like all new parents — we dreamed of the things he would accomplish in life. We discussed the sports he would play, what trips we would take, and who would be the first person to watch him overnight for us while we went on a couple’s vacation.
When our son was born with a congenital heart defect, our dreams shifted. We began to dream about him surviving into adulthood, meeting his extended family, and making it to kindergarten. Reluctantly, we pulled our heads out of the clouds and attempted to mask the pain we felt. We tried to have discussions about what life would look like once we were out of the hospital. We sat in cold, dark rooms surrounded by incessant beeping . . . and tried to have those same late night conversations about the future.
Speaking Two Different Languages
However, we were always speaking two different languages. When our son was in the hospital, I delved head first into being his medical advocate, planning for every medical step we would take once we left those hospital doors.
I made a VERY detailed binder with tabs and placeholders for cards. I included a three-hole punch in the binder in order to place documents in there the second they were handed to me. No one was going to ask me a question that I couldn’t answer about my son’s health.
While I focused on strengthening my medically minded mom skills, my husband was hurting. Those severed dreams were daunting. He struggled to understand how our lives could change in so many ways so quickly. He felt unsure about what every step forward would look like for us. While he searched for answers, the only thing I talked about was rearranging our house for an IV pole and splitting medicine duties.
Wanting My Dreams Back
Once we left the hospital, things changed again. After three months in and out of the hospital, my husband felt like we had found our rhythm and could start to move forward with our new normal. Finally, I felt a sense of relief from the medical world, and I was ready to hit the ground running. I wanted my dreams back. I wanted more than those dreams back: I felt an intense desire to see the world with our little family. After living in fear of losing our son, I wanted to celebrate his strength by doing everything. If we could have gone to the moon, I would have bought an extra spacesuit for anyone who wanted to join us.
The Growing Divide
The divide between us kept growing over time. I kept pushing for more time, more life, and more experiences. While my husband sought to return our lives to normal, I became frustrated by what I perceived as his lack of appreciation for our ability to sustain trauma.
Things fell apart quickly. Our dynamic became transactional and void of romance and trust. I doubted that his support was genuine, and he questioned my intentions. There was more than one broken heart in our home during this time.
We began to isolate from one another and only came together to be parents. Yet, somehow, we excelled as parents. We maintained our connection through our love for our son. He kept us on our toes, which forced us to come together and communicate well. As we became more experienced with medical emergencies, we felt confident in being advocates together. We were finally on the same page in these moments, and it felt good to be in sync again.
Learning a New Language
After two years of trying to find our footing, we sought help from a counselor. She gave us the language we needed to communicate in moments inside and outside of emergencies.
It took about six months, but we finally found a way to listen to one another without judgment and fear of hurt. We were able to communicate about what we wanted from our life together and as individuals. We started dreaming again and discovered that our dreams really didn’t have to change all that much. This led to an open conversation about where our marriage was heading.
Acknowledging the Hard
We acknowledged how hard it is for families with special needs to stay together, but we weren’t willing to let a diagnosis get between us.
We chose to move past our fight-or-flight reactions and restore our faith in our partnership. My husband and I stopped letting doctors scare us. We stopped letting three-hour binge Google searches scare us. We stopped silently worrying about the future and started enjoying the moment. I think our son would be disappointed in us if he knew that for a split second we thought that our life with him would be anything less than an amazing adventure.
Everything in Life Is a Process
To quote my husband: “Everything in life is a process.” Man, has this been a process. We’ve come so far. I’m so grateful to be able to say that right now, we’re finally doing it! We’re in such a good place, and we’re able to enjoy this time together.
I know the data says the percentage of people who get divorced after having a child with special needs is high. But I’m prepared to give that extra spacesuit to our counselor. No matter where life takes us, I’m unwilling to stop trying to overcome our family’s battle with a congenital heart defect.