We have had an amazing experience this week. We have a secret little corner of Facebook for parents of TN patients. We share info, ask questions, and sometimes vent at the basic wrong-ness of having a child fighting this beast.
A couple of weeks ago, one of the families posted that they would be in CA for a doctor’s appointment with one of the doctors a number of us have traveled to see, would anyone else happen to be there at the same time? Astonishingly, 7 families would be there about the same time, with ~40 hours of overlap.
So coordinating went into overdrive, and literal spreadsheets of schedules were made. We unfortunately were unable to get all 7 kids together at the same time. But we did get 6 at one time, and then swap one child out and another in, and have 6 another time.
If you are a parent of a TN Kid, you need to talk to other parents of TN kids. I can not tell you how beneficial this can be. The first night when we got 6 families together, we were in an Italian cafe, and we toasted not being alone, and we shut the place down together that night. It is powerful to not be alone. To say “the pain” to someone, have them reply “I know.” And they really do. Really. They’re not comparing it to that bad headache they had last week. To meet others who are tearing up – Moms and Dads – because they have been fighting the same battle with their children.
Right is the kids at the Italian restaurant.
You are not alone.
And you know what? Your child needs to connect with other children with TN. Because they are NOT ALONE. They are not the only one. They are not weird. (Well, ok, they may be weird. We have plenty of the best kinds of weird running around. But it’s not because of the TN!)
It can be awkward: texting, skyping, whatever, with far flung other kids your child doesn’t know. All of the kids who have done so have been hesitant at first. Most of the actual “texting nights” have been precipitated by one of the kids being in a particularly bad place, motivating the other kids to throw caution to the wind and jump in. And every one of them have said it was really awesome, and not nearly as awkward as they were worried it would be by the end.
Left is 6 kids who are post-MVD in the waiting room together.
They are not alone.
Don’t be alone in your fight. If you want to get more connected with other TN families, you can email us at TNKidsRock@gmail.com.