We had clinic visits today at LPCH. So many special kids. Some specialties you can see, some you can’t. Some “specials” are here with their parents and “normal” siblings. I see the very young special families and remember back when we first started the journey. It’s pretty scary, because even though there are others on the path, you really do walk it alone.
No one smiles today. Where’s the joy? Parents and others are preoccupied, trying to be “normal”. They fiddle with their phones, waiting to be called back to an exam room. For some, like us, the visit is routine and there have been no drastic changes in the child’s health. For others, it is the first time behind those doors with a specialist, and they have no idea what to expect.
There is always joy found with a “special”. That first time she sits up unassisted, even if she is already 3 years old. The first day of school. What parent doesn’t love/dread that day? First steps. Doesn’t matter if it’s alone or in a gait trainer. The face that just beams when she sees you, arms reaching out for a hug or to be held. Her own special way of giving a kiss. That first time of asserting her own opinion. Well, maybe not that so much.
One of my best friends calls my daughter Sierra Joy. Joy is not her middle name, but it’s because she is such a joy.