Errol came home from Duke Hospital on two different antibiotics that have to be administered intravenously every eight hours. Not to mention his other meds, his food, and his nightly pedicure! OOOOOOOOOOOOOO.
When Cary was pregnant with Owen we couldn’t wait for her to have the baby. The birth seemed like the goal, later we realized that birth was the starting line, not the finish.
We were desperate to get out of Duke Hospital with Errol, but as soon as we were discharged we realized that we were about to start another race. With this race, not only were we entered in a decathlon, we were wearing ice skates.
The events in the Errol decathlon include the iv flush, the diaper relay, the downhill sleep, and the ever popular baby lifting. It’s hard work.
The thing they left out of the future parents of disabled kids PowerPoint presentation was that we would have to be far more than just parents. We are Errol’s nurse, accountant, social worker, advocate, doctor, physical therapist, personal trainer, and beautician.
It's a non-stop job and it doesn’t pay very well...unless love is your currency. And that makes us rich beyond compare.
1 comment:
This is from 18 years ago when Natalya was born - I'm sure you've exhausted all your options. I could not leave her for a year and a half, period. Then tried to get a nurse for "respite care," but found that using those words nixed the plan. So in my appeal, requested nursing care a few times a week. I imagine this has been tried and failed, but just thought I'd mention it. And I guess, too, these years later Katie Beckett Medicaid does not help. Then, we got it for Natalya. I'm sure you know all about it. Without doubt, back then, Errol would have qualified. It covered all her expenses past what insurance covered, so we paid basically nothing in the end. I'm sure this is not true anymore. Just offering what is prob. useless information.
Much love,
Marigene
P.S. Do you have a set-up for your loving volunteer community, so you two can have some rest and respite?
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