What price advocacy?

My husband tells me how glad he is that he married someone who knows how to dig through a messy medical system and isn’t afraid to demand what we need for our child.

I know lots of folks are not as resourceful – which is a nice way of saying seriously pushy—but I just don’t see that I have any choice but to make dozens of phone calls to see the specialists we want when we want them, get the medicines we need, and find the information we cannot do without.

The thing is, squeezing so much in all the time wipes me out and leaves me little patience for my children’s ordinary needs, like extra cuddle time and attention when they are overtired and grumpy – which is a nice way of saying seriously unpleasant.

Elijah and Raphael in PJs playing before bed

Elijah and Raphael in PJs looking down, tired before bed

It took no fewer than a dozen phone calls, four work days, one argument (diplomatic, of course) at the local pharmacy, many lengthy voicemails traded back and forth, and research into Raphael’s enormous healthcare file on the floor in my home office/junk room to get the mail-order drug store we use to recognize it shorted us and to overnight me two canisters of QVAR, Raphael’s steroidal inhaler.

Without the medicine, swelling in his size-extra-small airway makes him junky, and his asthma goes on the attack. That can too easily lead to pneumonia, which is bad, bad, bad for a little guy like him.

It’s no fun when the insurance company says to call the pharmacy, and the pharmacy says to speak to the physician, and the physician says to talk to the insurance company, and round and round again.

But I don’t stop until I win.

We’ll have extra meds by Thursday. I already had enough to get us through Friday. (See, I’ve learned to be proactive, too.)

Just about every week, I deal with at least one – frequently more – out-of-the-ordinary thing that requires that much attention and persistence. I’m not kidding.

No one has time for that. When I share about my typical day, moms at Elijah’s preschool often say to me, “I don’t know how you do it.” I always respond, “Neither do I.”

Being my children’s advocate takes a toll. But that winning thing keeps me going.

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About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
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One Response to What price advocacy?

  1. AMEN!!! I have others tell me they don’t know how I do it. I say they would do the same. You just DO because your child needs it!!! Congrats on getting the medicine…
    xo
    lynn

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