Rare Disease Fact Day #3
When your child is first diagnosed with a rare syndrome your first thought is YES! We have an answer. We know what is making our child unique. Maybe there is a cure. Maybe there will be a roadmap that we can follow. Maybe there will be proven therapies and strategies.
Except when you are born with a rare syndrome you learn that unlike a common syndrome (like Down Syndrome), disorder (like Autism) or cancer (like breast cancer) there is no one who has gone before you. So you forge your own path.
You find solace in social media. You become friends with people you have never met but yet you feel a kinship.
I have met so many PACS1 families online. I have met more than a few in person. Each PACS1 parent is vital to me. Some bonds are stronger than others, but not because I do not adore every one of them. There are just more that I am in contact with.
What I love most is that if I am awake at 2am or 2pm there is a PACS1 parent there to answer a text.
There is Amber in Australia. The woman most likely to get my kid is being a jerk text.
There is Paulina in England. The woman most likely to give me a movie recommendation.
There is the Texas/Kansas Peeps. The women most likely to get my “I’m feeling like a bitch…but….” posts.
There is Beth in NJ whose daughter and mine are BFF on social media even tho they’ve only met in person twice. Even though she isn’t a Patriots fan we find common ground in raising teenagers.
There is Beth in NY who I have started a non-profit PACS1 Smiles with and is the person who says Kerri calm down or now, Kerri get your bitch on.
There is Kim from TN, who in all honesty is one of my best friends but I don’t know how. We are so different. She is such a better person than I am. Yet, she is one I can lean on.
There is Erin from Texas. A full-on Christian who never minds me questioning faith.
There is Joey from I’m not exactly what State he is allowed to reside in anymore, but while he plays the redneck online I know he is the sweetest boy ever.
There is Farhad from Canada. Farhad was one of my first PACS1 friends and he is my go-to when I want an honest, unvarnished opinion.
There is Taruna from CT (or currently Europe) who is my super hero.
There is Frederique from the Netherlands who I want to be when I grow up.
There is Mo Nika from Germany who if I am ever a grandmother I hope to emulate.
There is Brenden who when David was deployed to the Carolina’s he tried to find him to have a PACS1 dad reunion.
There is a parent in Alaska, in Brazil, in Turkey that I can speak with at any time if I feel alone.
Being a parent of a child with a rare syndrome is scary. Until you realize that while Facebook isn’t perfect, it is a safe haven for those who need a village.
So #PACS1 Fun Fact #3: find your village and be active in it.