As we watch and wait for Simon’s eyes to go back to normal we struggle.

Although his energy is higher, he’s sleeping great, eating better, and looks healthy…. We are in survival mode.

He had his first haircut this past week in over a year and a half

As both kids sleep well we’re getting more sleep.

So why are we so tired?

We’re in survival mode.

The wait is hard.

Knowing your child is getting NO medicine to prevent this beast from coming back.

Knowing if you continue treatment his eyes could stay that way, you know what’s ahead in those final two treatments….

We’re not done with this fight.

Even when treatment options are exhausted we will still wonder if. If it came back.

People keep saying we must be relieved that he’s almost done. There’s no relief except to know that medicinal measures are done. No more torture like that.

But the what – ifs make us tired.

Every pain he has makes us jump.

We wonder when survival mode will end.

We just don’t know if it ever will.

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