I went on a blind date this weekend. I’ve developed a relationship with someone I met online. They live a few states away. We’ve decided to finally meet midway between our states. I am nervously counting down the hours until we see one another face to face.
We are meeting in a motel parking lot and not telling anyone but our closest confidants.
No, I am not cheating on my husband!
After Bridget received the diagnosis of PACS1 I joined an online family group. We exchange dreams, fears, experiences and the sense of camaraderie. One mom and I struck up a friendship. She gets my sense of humor, I think. Like me, she has both the “typical tween” (which let me tell you is sometimes tougher than my “atypical” child) and a tween with PACS1. I am excited for Abby. She will meet a girl, her exact age, that has a sibling with PACS1.
How cool is that? Less than 30 children in the world have been diagnosed with PACS1. We get to meet one family, who has a sibling and they are not only (a) a girl and (b) the same age!
It is also terrifying.
What if she doesn’t like me in person? What if my online sense of humor doesn’t translate in real life. What if I have a Rosannadanna hair day? What if Bridget has a meltdown? What if the tweens have tween drama rather than a budding friendship?
What if, what if, what if, has replayed in my head every night that I have closed my eyes.
What if seeing the differences in Bridget and her PACS1 sibling are so significant it breaks one of our hearts? What if, what if, what if continues to play in my head.
Until that moment we met in the parking lot.
There was no awkwardness. There were hugs and cheers and holy crap moment of meeting someone who immediately understands your deepest fears and believes in your secret hopes.
The tweens? After a few moments of finding common topics quickly left the adults behind as they sat down to dinner. Abby, who has never met a stranger, told me later that at first she was nervous they would have nothing in common other than PACS1 yet that is the one thing they never talked about.
There was a sense of ease, in the restaurant where our children do not conform to acceptable restaurant behavior there was no judgement, only conversation. The husbands acted like old best friends. The wives never lacked in topics to cover.
The PACS1 girls?
They bonded over Sofia as the moms relaxed while the dads took the PACS1 siblings swimming.
PACS1 has affected both families in different ways. Bridget and her PACS1 sister have similarities (stubbornness, facial features, curly hair, toe walking, intellectual disability) and differences. They are not more or less than the other, they have both changed our families in ways we could never have imagined.
When Bridget was first undiagnosed I felt so lost and alone. I had friends with children who had special needs and health issues. Yet they had the answer to why and a path to move forward. Friends who have children that just suffer the sniffles are incredible, they are supportive and they are there whenever I need them. Yet for all their understanding, they have never lived with that fear at 2 in the morning about all the curve balls this unexpected life has thrown at you. For five years our family was in limbo, just looking for anything to try in order to make Bridget the best she could be. When we received the PACS1 diagnosis it was a sense of relief and abandonment. We were told only 2 others had the syndrome and not only were they boys, they were in Europe.
Two years later there are now almost 30 families, around the world, that have received a diagnosis of PACS1 and I was lucky enough to meet one of those families in the real world. To be able to sit at a table (or on a couch) with another PACS1 family is a gift I will always be thankful.
A weekend I will never forget.
Officially the best blind date ever.