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The Struggle to Find True Relationships for My Medically Complex Child

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As a rare mom, what keeps me up at night is a lack of true relationships in my son’s life.

One of my biggest blessings is being his best friend. My best friend and little boy has an ultra rare genetic disorder called CHAMP1.

A big challenge he faces is trying to have typical social interactions with his peers. It tears at my soul to watch my social, loving boy struggle and long to have friends.

I see him just yearning for meaningful, loving interactions. He spends all his time with his sister and his handful of therapists. Extra anxiety weighs heavy on my heart when a therapist switches companies, goes on maternity leave, or waits weeks for reauthorization of insurance. To my son, when this happens, he is losing one of his few friends and an individual who noticed him for how truly amazing he is.

My son’s condition makes him medically complex. I am his mother, but I am also his advocate and his voice at times. Interactions can be challenging when you’re struggling to find your own voice. Apraxia of speech from CHAMP1 makes his brain unable to verbally communicate what he wants to say. So, people tend to overlook him and the value of interactions with him. They talk about him but not directly to him. He can light up a room with his smile and sweet and charming demeanor, but to have a person make direct eye contact and talk and play with him has been painfully nonexistent. People just don’t know how to interact with him.

He is loved by his community and family, but he is lacking true meaningful human interactions. Relationships are what missing in his life.

My son’s disease is so rare that my husband and I started the CHAMP1 Research Foundation to help fund research, raise awareness and find a treatment for JJ and kids like him. Along with the foundation comes a lot of time commitment, so I treasure every interaction I get with my son.

My son has many daily medical challenges, but his longing for meaningful interactions is one of my biggest challenges as his mother.

I will always be his best friend and my sweet boy will always be mine.

Are you the parent of a medically complex child? Let us know in the comments below what it’s been like to build a community for your child and family.

Originally published: August 14, 2019
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