I consider myself an optimist. But having a child with medical needs as complex as Kohl’s has punctuated that optimism with puddles of anxiety.
So as you sit in your Monday morning team meeting, wishing you were still at the beach, enjoying the first real vacation in years; you assume the worst when you receive a call on your cell phone from your wife.
Is Kohl having a seizure? Was there something wrong with his feeding tube, I wondered?
Quickly silencing my cell phone, I diverted my attention away from the meeting’s agenda and texted Sarah to find out the reason for her call, which was clearly important since she attempted to reach me on my cell phone after trying my office.
But today’s crisis involved neither seizures nor broken G-tubes. It was tacos (or lack thereof):
And speaking of hunger, we learned today that Kohl loves laughing cow cheese. Both Kohl and the cow find this cheese not only delicious, but apparently hilarious:
When one of our two angelic aides sent me this picture it made my day not just because it’s a cute picture. Not just because it was a succees in oral feeding .
The main reason it made my day is because it was one less thing for me to do.
Kohl gets his food via G-tube, and teaching him to eat by mouth so that he can ween off the G-tube is one of many distant goals we have for Kohl. Among sitting up unassisted, talking, controling muscle tone, avoiding hip dislocation and invasive surgeries. These too are goals.
But they are goals that will require near-constant attention to achieve. They are goals which involve hard work that, by the time Sarah and I arrive home from work, neither of us is inclined to do.
But this was done for us today. It was yet another reminder of how the people we surround ourselves with so often plug the gaps that we create and lift us up as parents when we so often fall short.
Kohl is in good hands.