Characteristics of a Rare Disease Mother

A mother is built for motherhood. Just as a tiger is built exactly as it needs to be to survive in the jungle, so is a rare disease mother. She has the exact characteristics her child needs her to have. The mother is capable, and she possesses the God-given instruments needed to survive in the rare disease-motherhood jungle.

• The mother possesses ears that hear the yes when someone/something tells her child no.
• The mother has eyes that see through to their child’s heart to know what they want or need even when they can’t speak for themselves.
• The mother has a sense of smell that can sniff out when something’s not right.
• The mother has a mouth that boldly speaks on her child’s behalf when it’s necessary.
• The mother has lips that lull and soothe her child to sleep after one of their “hard” days.
• The mother has a palate that makes the taste of each small victory oh so much sweeter.
• The mother has a brain that will retain all sorts of information, even if it’s beyond her comprehension if it benefits her child.
• The mother has hands that caress the forehead of her child who is sick or in pain.
• The mother has arms that cradle her crying child who is scared during a traumatic episode or medical procedure.
• The mother has legs that run the extra mile to get whatever her child needs.
• The mother has feet that hit the ground running from the moment she wakes up in the morning until she lies down at night.
• The mother has a stomach that bears hard news, tribulations, and disappointments.
• The mother has a back that transfers her child to and from their wheelchair many, many times a day.
• The mother has shoulders to cry on that offer comfort and peace to her loved ones.
• The mother has a temperament that can be as fierce as a wild beast or as gentle as a lamb.
• The mother has a mind that is processing, filtering, and discerning information all while multitasking and making dinner.
• The mother has a soul of an angel, always believing the best in her child.
• The mother has a heart that won’t stop loving no matter where this journey goes or what it takes along its way.

Ps. For more inspiration about rare-disease motherhood and the strength of rare-disease mothers, check out this poem “I Thought I’d Teach You.” Also, check out the rare-disease section of The Mighty.