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A Publication about Visual Impairments and Deafblindness for Families and Professionals

TX SenseAbilities - Summer 2017

By Heather Joy Magdeleno, Parent, Phoenix, AZ

Abstract: The author shares her personal journey of understanding the unexpected challenges and gifts of being married while bringing up two children with disabilities. We invite you to check out Heather Joy’s other blogs

Key Words: Family Wisdom, deafblind, special needs parenting, marriage, resiliency, attachment parenting

I didn’t expect marriage to look like this. Maybe I was imagining what some of us might imagine before getting married and having children: going on trips together, creating a home together, him doing his own creative projects, me gardening, us supporting each other, loving each other. Him taking care of the bills, me doing the shopping. Maybe we would find an “open-minded” church together, maybe we would build community. Friends would come by for a bonfire in the front yard, we would host neighborhood dinner parties. We would give birth to our beautiful children, at home, in water. I would breastfeed and practice attachment parenting. We wouldn’t need to go to the doctor much because of our conscious eating and living. We would visit family whenever we wanted, in Santa Barbara and Colorado. We would visit beautiful places with our kids and camp and walk on the beach and love each other in the night. We would have the world in the palm of our hands and we would look at each other and be proud. This is the life I imagined, some of the reasons why I thought marriage and kids might be a good idea. Although I didn’t really know. Just this feeling of what it could and should be.

Then we had two babies that required constant care. The nights were broken up, rarely a full night sleep and our regular conversations were suddenly about pumping and breastmilk and poop and lack of it and exhaustion and fear of the future and survival. Our days blended into the nights and we were overwhelmed. We had moments of calm and connection and loving each other, but mostly we were caring for our babies, at times, just keeping them alive. Our marriage began to slip away. Out of fear I became controlling. Everything was out of my control, so I tried to control my husband, my mom, my family. I survived only and lived fearing the future. I started to question, “What is the point of being married anyway?” This became my attitude and I was no longer able to see my ally by my side. Walls were built and we spent more energy keeping them up than if we had softened our hearts. We lived like this for years. Unhappy. Fighting against the very person we needed.

Then one night my heart opened up to him. It was a miracle. I thought we were over. For almost a year we had been living together, lovingly taking care of our children, determined to not let go of this, but we were no longer “together”. Suddenly, on this full moon night, my heart opened and I knew it was the right thing. This man wasn't going anywhere, he was not going to leave my side. He had been with us through thick and thin and I knew I needed him.