Monthly Archives: February 2025

Rare Disease Day 2025

I tried to explain to someone recently that having a rare child is both the same yet uniquely different than having a typical child

The typical mom and the rare mom cannot believe their girl is 16 years old

The typical mom is afraid of her 16yo daughter getting her license and discovering boys

The rare mom mourns just a bit that her child will never drive and breathes a sigh of relief that her daughter won’t be in a car with a 16yo boy 🤣

Both the typical mom and rare mom of a 16y daughter watches #gaurdiansofthegalaxy together and sing along to the music. Both the typical and rare 16y daughter tells their moms they have horrible singing and please stop

The typical mom of a 16y daughter worries about her breaking curfew. The rare mom of a 16y puts her to bed at 8p and relaxes with a nice glass of Pinot Grigio

Both moms worry about the future. Both moms worry if their 16y daughter will ever be independent and live on her own

The typical daughter will. The rare daughter will not

Both moms are amazed about what their daughters have accomplished and worry about moments in life where they might fail

The typical mom of a 16y is helping her make plans for after high school. The rare mom is figuring out her life on how to support the 16y that will soon lose the support system of the public schools

Both the typical mom and the rare mom lose sleep at night and worry about their 16y daughters future

Both moms are so in love with their 16y daughters

Both moms need their villagers

And yes, this rare mom gets overwhelmed and sometimes is envious of that typical mom that will experience all those firsts with their typical 16y

This rare mom also knows that this unique child she has been given fills her world with such joy, moments of fantastic and laugh out loud experiences that while this isn’t the life she imagined 16 years ago…she also cannot imagine her world without her rare girl

Which is how I know that both the rare mom and that typical mom parenting isn’t all that different