Advocate

One of the things about being a special needs parent that you don’t hear about right away is how you have to become your child’s advocate. You know your child best, so you know when something is not right, and you have to educate doctors or other providers about how you know your child isn’t acting like herself or himself. But it gets very, very tiring. It is obnoxious to always have to fight for what seems like should just be given to your child. It is crazy to have to work so freaking hard to – well, I guess the word is teach – to teach others what normal is for your child.

So, the drama – how advocating ties into Gracie. I’m getting there – bear with me. I spent my birthday last Sunday worried that something was really wrong with her hand, then Tuesday we had confirmation of sorts from the ortho doc. I spent Wednesday worrying about the MRI – wondering if it really was the right thing to put Grace under general anesthesia, worrying about whether another hard-to-treat infection was on the imminent horizon – and nothing happened. No one called to schedule the MRI, nothing happened. Thursday, though, doings were afoot (as my Southern husband would say). I got a call at 11:30, just as I was about to leave work to pick up Gracie from preschool. It was the nurse at the orthopedist’s office. She called to tell me that Grace’s regular ortho, who has been out of the office lately, is back and thinks the x-rays show healing fractures and therefore the MRI is not necessary. I about lost it – my little girl could DIE from an infection, and they’re not even going to LOOK for it??? The nurse on the phone was somewhat surprised that I was upset. Eventually, she scheduled an appointment for us for the following morning with the regular ortho.

I didn’t sleep much Thursday night. I was so worried that we would burn the bridge and not be able to work with this ortho again because she wouldn’t be working for Grace’s best interest. I spent hours awake in bed, worrying. I finally fell asleep right when my alarm went off for work – that makes for a bad day!

By the time we got to the appointment Friday, I was resigned. I was too tired to fight – too tired to reject whatever solution the ortho would offer. I could barely make it through the day. But, to my surprise, the appointment went fairly well. The doctor spent a great deal of time with us, showing me x-rays and showing me exactly where and when the supposed fractures happened. She answered all my questions, she addressed all my concerns. We were civil with each other, more than civil – we had mutual respect for each other. It was better than I could ever have expected. We left the appointment with no hardship on any side.

I am still somewhat skeptical about whether it’s a fracture (three fractures, technically) or infection causing the swelling and heat in Grace’s hand. But, at some point you have to accept that the experts know what they’re doing, and maybe the doctor is right that it’s a complex 3-bone fracture rather than an infection. For now, this is good news. I am still shell-shocked and waiting for the other shoe to fall, but this is good news. Halle-freakin’-luiah.

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