Parenting and Cystinosis: A Rare Patient Interview

Jim and Melea Martin are Outreach Partners with Future by Design, a family support group organized by the Cystinosis Research Network. Melea has cystinosis and Jim is her husband. We recently sat down with them to discuss what it is like to be parents.

Rebekah: Why choose adoption?

Jim & Melea
: We knew that we wanted a child. We tried other avenues to conceive a child naturally, and at the same time pursued adoption. We figured that if both pursuits were successful, having two or three children would be a fun challenge to contend with. Had we had a natural born child, we may have still looked into adoption.

: How did you decide to adopt and where did you go for resources?

Jim & Melea: We first did what everybody does and googled adoption and our location to check out different agencies and adoption law offices. It was just a matter of printing out phone numbers and calling them all, asking questions and writing down the answers.

Loving and rearing a child is an important experience for adults– what does the role of mother and father mean to you?

Jim & Melea
: Providing a safe loving and nurturing environment and being a caretaker and a life teacher. Creating fun experiences and being a guide for new adventures. Setting boundaries, teaching the importance of limits and respect for others as well as self respect. Setting good examples and impressing positive qualities such as kindness, compassion, honesty and responsibility.

: Write anything that comes to your mind about your vision of parenting.

Jim & Melea
: One of the overarching themes of parenting should be patience. You should never forget that at one time in your life everything was brand new and you didn’t know anything. Good parenting should encourage creativity, making choices and trusting those choices; providing the freedom to find their own style and perspective and having their own opinion. It’s okay to rest your hands with your child’s hands when they’re behind the wheel of their decisions, but you shouldn’t steer for them. A parent should love their child and laugh with them, but not confuse their role and relationship with friendship.

About the Authors: Melea is 35 years old living with cystinosis. She resides in Ohio with her husband Jim and daughter Claire. Melea went to school and received my Associate’s degree in Early Childhood Education. She loves art and photography. Melea works at a preschool/daycare and enjoy working with young children, exploring and learning new things. Painting with the younger ones (even the one year olds) is one of her favorite activities at work. She loves to shop at Target, unique local shops, and any bookstores. Jim is 48 years old and married to Melea who has cystinosis. He works at GM and Mindrocket. He was born and bred in Ohio and studied music at Youngstown State University.

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