A Real Mother and a Rare Child #RareDiseaseDay2015

I can't know what it's like to watch my baby in the hospital, constantly subjected to painful tests, surgeries and procedures, to not be able to hold him, to not be able to heal him, save him, comfort him or do anything at all to make it better.

I can't know what it's like, for over a year, to not know what's wrong and how to help, despite the tests, despite the experts, despite the fights, despite the prayers and despite the tears.

I can't know what it's like to dedicate my life to fighting day and night for a way to heal my precious baby- to argue with doctors, to demand a fair chance for diagnosis, to seek to the ends of the earth for someone who can save my precious son. 

I can't know what it's like to have a tiny little girl who also wants her mommy's attention, and to give her every ounce of my time that I can and always feel it isn't enough.

I can't know what it's like to have a nearly paralyzed baby on life support who could stop breathing at any time, to deal with that daily fear and pray constantly to our Lord for his help, for strength to make it through and to have the faith to believe in what feels like the impossible. 

I can't know what it's like to have nurses and caregivers getting sick or cancelling their work shift, leaving me to abandon my plans for the entire day to watch my little child to make sure he doesn't stop breathing, while watching my little girl at the same time and being the best wife to my husband I can be. 

But I can admire her. And I can support her. And I can hold her up as an example of what it means to love, to sacrifice, to devote my life to faith and courage. 

Priscilla Zahner Rosenlund, I love you. 

And that is one of a million reasons why I support #RareDiseaseDay2015.

And I ask for more research, more funding for research, more public attention and more prayers for the one in ten people with rare disease, such as Baby Truett and for mothers like my cousin Priscilla, with nowhere to turn.