Rare Disease Day 15

#RareDisease not so fun fact #15

While most typical marriages are at risk for divorce, special needs couples divorce rates are higher. Rare Syndrome couples even more so

They become two parents. Sometimes taking turns to balance their typical child’s events with their rare syndromes needs

They begin living separate lives in the same home. One parent caring for the rare syndrome child, one parent working to support them

They buckle under the tremendous financial burden the cost of the medical care it takes to keep their child healthy

They work two jobs, passing in the driveway

They become less intimate, too emotionally drained to care for one another.

Their talk becomes child centered, about the school fight, the insurance battle, the new therapy or diagnosis and less about their day away from their rare child.

They become solo hermits. One stays home while the other goes out because it’s almost impossible to find a babysitter who can care for their child

They try to remain partners, but their different views on what’s best for their rare child become stand-offs rather than collaboration.

It’s harder to stay connected, to remember you were in love and a couple before you fell in love with your child

I am determined not to fall into the traps that lead a higher divorce rate for Rare Syndrome Parents.

I continue to hope we are strong enough to battle for our marriage like we do our child.

If raising Bridget has taught me anything it’s to never stop fighting

PS—David and I are fine. It’s just this is a true #RareSyndrome fact. And I’ve never shied from the truth.


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